A boy named Lennon

Moving the Blog

2010-12-29T18:12:00.000-08:00

I have moved and imported all post to a new blog & domain... the new blog is now located at http://lennonsworld.com .. I will leave this one up for a little while but will no longer post to it... rather I will post to the other one... thanks!

Kids are good for the soul....

2010-12-07T20:52:00.000-08:00

...this year I am struggling to get into the spirit of the season...but it takes a child to make your heart smile.. Lennon had made salt dough ornaments that he painted... and well was ready to put them on our tree.. our white little fake tree.. the one thing he was most concerned about is that the star he made last year was on absolutely perfect...while all the other ornaments just about hung of the same branch...

As we are continuing to wait ..4 months and counting... I am amazed at the things Lennon has accomplished.. the relationship I have been able to mend and forge with my other children as he still often takes most of my attention... its a balancing act no doubt...my oldest joined the army and will leave for boot camp in May.. while my 12 year old his heading into male adolescent years...oi life goes on... even when another child is ill..and just because I struggle with this season doesn't mean my children should have to struggle too...with that said our tree is up..

Hanging in ... Hanging On

2010-12-01T05:00:00.000-08:00

This week Lennon's points on the transplant list should go up.. in the mean time.. Lennon's progressing to be a little bit more sick. Sick to the point that we now decided to restrict any extra extraneous activity such as physical education in school and try to keep a very active 7 year old mellow/non-active. I have no idea how this should or would work... because it isn't right now.. well I can control P.E. and Recess by not having him in school... I can't control him not running from one end to the house to the other.. ugh..

There is conversation about whether or not he will require supplemental oxygen.. and that can be tricky... in some folk oxygen makes them loopy, changes their personality.. in other words they may appear crazy.. in other folks it doesn't.. and merely just gives them oxygen.. so this is something still being worked out.. its terrible watching that life-loving boy run and his lips and/or fingers turning blue... simply because the oxygen can't get into his lungs properly...Lots of times by the end of the day.. Lennon's looks very ill despite the quirkiness.. he doesn't act it... that's for sure. He's been dealing with the same/similar cold for awhile now and it won't go away.. coughing also a symptom of the lung issue.. starts to increase in the evening hours.. the challenge is knowing is the coughing from the lung issue or is it because of the drainage of the sinus into his throat..

It makes my heart ache..

Hepatopulmonary Syndrome — A Liver-Induced Lung Vascular Disorder

2010-11-17T06:54:00.000-08:00

Just talked to Pittsburgh.... still waiting on the right size and the right blood type for a match. He will go up on the list beginning of December with 53 points (he has 50 right now). In the mean time, the scans we did with his lungs confirmed that Lennon has Hepatopulmonary Syndrome — A Liver-Induced Lung Vascular Disorder. Which is a syndrome of shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by vasodilation (broadening of the blood vessels) in the lungs of patients with liver disease.

The docs suspected as much and the scans merely confirmed this. Of course it doesn't change anything in our plans moving forward with the transplant. If anything, its one of those things that has to happen. The lung situation will only get worse the longer he has the current liver.

In other news, Lennon has learned to identify his name and write it too except if forgets the second n. He's making progress with the letters he's learning and the numbers.. it is a slow process but nonetheless he's learning!

To remember the experience

2010-11-09T12:14:00.000-08:00

November 18, 2010 it will have been 2 years since the first liver transplant surgery. It (in my mind) should be a big celebration of life - of his life - of having been given the chance to live life. Clearly in my head I know that it is what saved his life but it is heavy in my heart that we will have to experience this again.

I remember the time before despite being riddled with ammonia in his system the zest of life he has - this indescribable thirst of living. I remember the months we spend praying, hoping, crying, praying some more that he will make it. That he has enough will power to come off the breathing tube - that his body has the strength to do the healing it needs to do.

I remember the time when he came home like a wilted little flower who was unable to embrace life - who appeared depressed and the light in his eyes was gone. I remember the days and months it has taken for him to be Lennon. To be center stage, to be full of life, to be funny, to keep us on our toes, to be charming and even manipulating everyone around him to get his way. I remember the experiences in my heart and in my head.

I want to celebrate his chance of having a wonderful life, but at this moment I am doing this with a heavy heart because I know another liver transplant is pending - and I worry - I worry about so much. I worry about him making it through the surgery and the recovery to come. I worry about my other kids how they are coping and how they will be coping.

It is a difficult feat, sitting at the edge every day and when the phone rings looking, wondering, hoping, dreading that its the hospital telling me that they have had an offer for a liver. My heart hurts reflecting on the experiences we have had already and the experience to come - whatever this may be (because we don't know). We just don't know...

The education frustration

2010-11-03T18:07:00.000-07:00

Before I get into this post - Lennon is doing ok. He currently has a terrible cold (and has brought on this post) but still exhibits the same thirst for life and learning as ever. There has not been a word about the transplant and so we are still waiting - kind of eerie as we are coming up on the 2nd year anniversaries for transplant one and two.

Now to my grief if you will.. so Lennon has cold brought on oh by the weather change - it is fall now and well that the people in the school can't make sure he puts his coat on before he leaves the building and well that he is still immune suppressed etc. Yesterday, Lennon went to school just like always when he has a bit of a runny nose. It wasn't anything that any of us have never dealt with because I am sure we have. At 12 p.m. my eldest calls and says the school wants us to get Lennon because they can't get anything done since they are constantly wiping his nose. Uhm Lennon can wipe his own nose. Yes he has a disability and yes he has special needs but there are some things he can do. He only had one our left of school - that last hour consists of recess and lunch. Say that again and they didn't have anyone that could bring him can we come get him. Ok - we did. Perhaps it was worse than I thought - perhaps he had developed a fever. Nope just a runny nose that's all.

Then I find a note in his backpack stating that Lennon had a runny nose and it needed constant wiping and they couldn't' get much done due to the constant wiping of said nose. What? Again Lennon could have done this himself and I am growing frustrated. Just last week I learned that he wasn't receiving speech therapy like I believed he was receiving and I feel he needs to be receiving.

So now I am left with the thought, well maybe I am better off.. no maybe he's better off if he's being home schooled. Then I would know that he's working, and learning - because he can learn. He has finally learned to identify all the letter of the alphabet (YAY LENNON). He still struggles with his numbers but even that will come in time. The one thing that hinders me from really moving forward is the socialization that Lennon gets from going to a public school. Yes I know home schoolers get to do lots of activities, with the right organization play dates, field trips and so forth. Next summer he can even start Special Olympics as he will be the right age.. but the question then becomes: Can I manage home schooling him? Can I handle the pressure and stress that does come with it, when he's having a terrible day or a melt down as he's becoming frustrated. Would he still enjoy learning as much as he does now? There are many questions and feelings I have about this. For one, I shouldn't even have to consider home schooling him if the public education system would do what they should - educate. I am not saying all school systems are like that but I am feeling a bit frustrated when it comes to the special needs children. Lennon is in a regular 1st grade class and works on a kindergarten level - he knows he doesn't know the same work as the other kids - he does understand some of what is going on. I have gotten some support in venturing into this but I just don't know if this is the answer for Lennon. Maybe its just this year - maybe its just this ~~teacher~~ I don't know..

I think however that my decision shouldn't happen now - it should wait till after the surgery because I think I am already think he should be home (in a bubble again) after he is able to return home. I don't think I will be trying to send him off to school as soon as possible - not that I really pushed it hard - but he loves other kids. Maybe I will only home school him for a year and then re-evaluate.. maybe..

This definitely requires some pondering, researching and finding the resources for home schooling special needs children, education for special needs children in any capacity for the public school system.. tho I will welcome your feedback... thanks for listening

Mother Sells Soap To Raise Money For Son With Rare Genetic Disorder

2010-10-18T18:23:00.000-07:00

Mother Sells Soap To Raise Money For Son With Rare Cancer

They didn't get it quite right... Urea Cycle Disorder is not a Cancer but a metabolic genetic disorder.. but it's been shared... I work to support my family and the urea cycle foundation... its important to me.. its affected our family as you see.. or rather have read.

Let me tell you that Lennon was excited to be on tv... but he was even more excited to see his mom on tv.. not sure I have ever seen a bigger smile than that. Get a glimpse of him in the story link above...

Happenings...

2010-10-14T12:23:00.000-07:00

So awhile back I was interviewed about why I do what I do... meaning supporting the family with my business and supporting the National Urea Cycle Foundation with a section of sales. You can read the article here. Today I received a phone call from the local cbs news station to do an interview about why I do what I do. I am elated to no end that more info about UCD's will be shared and the fact that not only do I support my family with it but paying it forward so to speak.

I am beginning to move mountains one pebble at a time!

There's a beauty in his life called living

2010-10-11T06:24:00.000-07:00

I don't think Lennon knows anything else other than just be himself and live life. He doesn't know anything different. Lennon is affectionate (sometimes to the point of being too much...really? Is there such a thing as receiving too much love from your child?). He is a constant reminder that you should always be who you are, love every day, get mad and get over it, be passionate about the people and things you love - even if they are just ideals and even if they don't conform with most people i.e. society.

This morning his gentlessness, compassion and thoughtfulness that we are able to see on days he's feeling well shines. After his morning ritual of bath time and picking out his breakfast- he went to talk to his brother. When he returned he said:" Sorry it took so long, but I had to say hi to him". Never apologize for talking to the people you love.. Lennon certainly lets everyone know that he thinks about them, that he loves them and that they matter to him.

Yesterday, he was looking through a magazine and saw a picture of a stick-figure family. "Hey mommy! This is us!" as he went on to recall everyone's name that matter to him. I love these moments. The moments that he clearly means: people I love you! Hear me! Listen to me! Pay attention to me!

Sometimes there is this battle (my battle) of whether he knows/gets it that he's sick and that he will undergo more surgeries. Who knows, but it begs to question that if he knows... is that the reason for the ultimate affection? Or is this simply Lennon - Lennon who merely loves the world he's living in. No I don't contemplate this too much, but occasionally it does make me wonder.

Occasionally I know we all get aggravated and irritated keeping in mind that his is Lennon - the uber-affectionate to the point that sometimes one can't breathe. All Lennon wants is to spend time with someone. Lennon *Fixates* on people - one day its all about mom - the next about one of his siblings - it changes sometimes day to day ...sometimes week to week .. I always hear myself saying:" So? Spend some time with him!"

There is such a tremendous amount of Lessons I have learned and are still waiting to be learned. Everyday I am grateful to the children that I have - each of them having taught me different lessons but the best lesson I have learned is to truly embrace each day - one day at a time and love the people in your life - be passionate about the things you belief in... ok so I learned more than that ^_^

In health news.. Lennon is stable - progressing slowly, meaning that his lungs are not working a 100% and that there are more signs of being more blue occasionally. At this time - a transplant is literally the only cure for his oxygen issues to resolve. We are waiting - with a calculation of 50 points - somewhere in the top - waiting any day any minute for the call.

This is what I ask

2010-09-13T10:32:00.000-07:00

to keep the family who will loose their own loved one, who will make the sacrifice to donate the organs so another shall live. Keep them in our hearts, send them our love and positive thoughts and love them for their human kindness.

Pray, chant or do whatever it is you do to keep the family filled with warmth and strength through their difficult time.

We will not know who they are but all families or individuals who participate in organ donation need to be lifted into our hearts... without them lives could not be saved.

Thank you!

Looking for some innner strength

2010-09-04T21:00:00.000-07:00

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. -- Christopher Reeve

Some days I don't know how I manage. Today was one of those days. What I often don't write about is the cognitive disability that has impacted Lennon's life...his impulsiveness, inability to focus and/or listen, inability to assess safety and risky situation and the lack of maturity for a 7 year old.

When you are with Lennon you have to be "on" all the time, especially when he is awake because you just don't know what he may do next. I foster/encourage his independence but that comes at a price when he can't assess situations accurately and they become unsafe. Lennon LOVES freezer pops, he LOVES to get them himself. He will even come to me with freezer pop in one hand and ..ugh.. scissors in the other hand. There are times he "runs" because he becomes TOO excited. There are times he climbs on the chair, because he is MR. INDEPENDENT. It is hard keeping him safe and encouraging him to do things for himself. It is hard not to sound like Marlin ~ Nemo's dad who says: You think you can do these thinks, but you just can't. How many times that sentence goes through my head I won't mention, but its there. And then I push it aside, because he can do these things, because I encourage him to do these things.

Last night he unhooked his feeding tube, aside the fact I know need to clean formula stains, Lennon with his action indicated he is tired of the feeding tube. I know this, he tells me all the time he wants to start eating and I gently remind him that until he does he will have to have the tube. Its a struggle because I can see he wants to be "normal" like the other kids in school while at the same time having to be restricted from foods (protein) and that there isn't enough food that I could offer that would satisfy him.. let alone that he would try them.

Tonight he spit one of his pills out ~ time to crush them and give them through the tube!

Its not always like this. Lennon loves to share his love... he loves to show attention (especially to me) by sitting in the lab or laying on the couch with someone. But then he struggles with transition and understanding and (unintentionally) disrespecting ... Lennon wants what he wants because he focuses on one thing so much that its hard for him to transition to something else.. and then I remember the affection he's giving me... the unconditional love that he has and so freely shares with everyone.

When I remember his affection - every time he acts out, has the inability to focus or transition - I embrace it. I disregard how stressful my moment, my minute or may day has been. Because in the end he is simply living in this world the best way he knows how - unconditionally. And yet it doesn't take away the stress and the frustration and the tiredness I feel by the time the day is over, knowing I will have to do it all over again tomorrow. And again, I look forward to every morning, because I know that during the day we will spend special loving moments together - hugging, cuddling on the couch, even if only for a minute.

I was looking for something tonight for inner strength and I came across the quote from Christopher Reeve. It lifted me and its own right made me acknowledge myself and the person I am in Lennon's life.

Good Night!

Bubble Echo

2010-09-02T09:24:00.000-07:00

Today Lennon had a bubble echo done because his oxygen has been pretty low the last time we were at the hospital.. it was like 81... today it was 91... so we are now aware that his o2 changes from one minute to the next.

The results from the bubble echo indicate that the capillaries cannot do what they need to do. They call this AVM ~ Arterio-Venous Malformation ~ an abnormal collection of blood vessels. AVM can be thought of as a "Short Circuit" where the blood does not go to the tissues but is pumped through the shunt and back to the heart without ever giving nutrients to the tissues. The link talks about AVM but more brain related not so much about the lung, so if you happen to read it, I don't think that the brain stuff is true.. but could correlate to the lung? Researching I found this : PAVM is an abnormal communication between the pulmonary artery and the pulmonary vein.

Not so good but I think something everyone thought this would be the case. The bubbles went into his heart within 3 heart beats and according to the doctor it should take much longer than that if at all. One side of the heart was white and the next second so was the other side.

I called Pittsburgh to find out if this will change his status on the transplant list. First this was not the test Pittsburgh wanted..they are more interested in a pulmonary scan of sorts but are deciding whether this is acceptable or not. If they still want to scan, Lennon and I will be traveling to Pittsburgh again next week. If it is acceptable, we continue to wait.

According to the coordinator in Pittsburgh, Lennon will move to the top of the list next week.

**Addendum** Lennon will have a pulmonary infusion scan with some sedation to keep him calm/quiet and ultimately still through the process.

The waiting game

2010-08-20T20:43:00.000-07:00

It's pretty daunting the waiting game. My phone rang today and it was the hospital and my heart took an extra beat or two. It was only to talk about some additional things they want to do such as check his blood oxygen level as that had been pretty low and of course lab work so they can update his listing on the transplant waiting list. Depending on the O2 level may require additional tests like what they call a bubble echo. They checked the blood flow into his lungs while we were at Pittsburgh and it looked good, but there is that concern that his breathing is not what it should be and is more than likely related to the failing liver.

If the liver doesn't get enough flow of blood in then it can't return the blood back into the system.

One thing that we have gotten in place is transport to the hospital. Lennon and I will be flying from Charlottesville to Pittsburgh when the time comes. While that is one "less" thing to worry about it doesn't take the worries and stressors away about the whole ordeal. Lennon has never flown before and I wonder how he will do getting into that airplane, flying for about 3 hours. Will he be calm? Will he be stressed and freaked out? I don't know. I for one am not a fan of flying but I will have to be the super calm mom! Why? Ha because Lennon can read me and if I am anxious then he will be anxious too.

I am trying to get whatever I can set into order. I have a business to run and some things I can't do from Pittsburgh so I have been teaching the rest of my family what to do and how to do it. Some parts of the business will not have production while others I can do in Pittsburgh.

Lennon is doing well however. He's enjoying school and just being normal. This past week he had homework and while he at first resisted the process, he was beaming with pride when he did it (with my help). He loves going to school. I think its a combination of being around other kids and learning... being challenged a little.

Well, this is all I have for the moment. I hope everyone has had a good day!

It's Official

2010-08-09T18:16:00.000-07:00

Today I received the phone call that Lennon is on the transplant list for another liver. I am with mixed emotions but really is there another choice?

If we do not move forward what kind of mom would I be to not save my son's life and do what ever I can to give him a fighting chance?! I am glad they recommended the transplant rather than saying they can't do anything for him.

Certainly it doesn't come without risk as we know to well already. The chance of this happening again... well who knows. Everything we do has risks.
The risk of the portal vein and/or hepatic vein clotting or having thrombosis stands with every (liver) transplant. Lennon has both + one. We can hope and pray that this one will be successful and that Lennon has a fighting chance at life.

Allowing (probably not the right word) Lennon to die doesn't seem to be an option which is what would happen if we do nothing. The liver is already dying due to thrombosis and clotting. Allowing him to have a fighting chance is the right thing to do!

We know from the past that our local hospital has used partial liver and the game plan with the new hospital is to use a whole cadaver liver, which according to the surgeon will give Lennon a better chance at survival. I will not knock what our local hospital has done because I truly belief that they have done everything possible. Kudos to them for doing what is best for Lennon and recommending that another hospital specialized in peds transplants may be better at this than they are.

The reality is that if I don't do anything and do not move forward I will feel guilty for not trying. By moving forward with another transplant I know that we have done everything in our power.

Thanks for your continuing prayers and positive thoughts.

Early Reports of the hepatic Venogram

2010-08-07T11:13:00.000-07:00

The initial report is there is a blockage on the vena cava vein. This means that if another liver transplant is recommended that more surgeons may be needed in the OR due to the added complication. The vena cava is kind of important piece as it allows the blood flow to the heart...

The Surgeons said that within the next week we will have a recommendation on how to proceed. This is kind of nerv' wrecking.

Its hard to know that your child is incredibly sick and that a risky surgery is the only thing that may safe his life.

I am still trying to wrap my head around it but its difficult and leaves me with a heavy heavy heart.

***************************************************
Sometimes we get so carried away in our daily lives that at times we forget what matters. I have had many emotions this week but in the end it is about spending quality time not just with Lennon but with everyone that I hold dear to my heart. Realizing where your true energy belongs can often be difficult if we get caught up in emotions due to others actions.

The last couple of years have taught me what sacrifices I am willing to make, and which ones I will not. I am grateful to the support (however it is given) we are receiving from near and far. Whatever the next week and the future brings it will not be an easy undertaking and I hope that I have the strength to support the people in my life that needed it!

Our trip to Pittsburgh

2010-08-05T15:31:00.000-07:00

We drove into Pittsburgh to start our process of pre-evaluation for a liver transplant Tuesday night. We started our trip at midnight and Lennon was awake for most part of the trip till about 5 a.m. before taking a short nap.

The first appointment that day was labs... whew what a confusing mess...check in with registration...receive a pager..wait for pager to go off... after that we met with Anesthesia but that was short because its technically one of those things that happens later...closer to surgery.

Next we had a psychological evaluation...painless...lots of talking..lots of note taking and being told we should see a therapist.. umm yes...

Next and the last thing for that day was Radiology... Ultrasound, CT Scan and XRay. Lennon was doing so well.. I have never seen him cooperate as much as he did then. The CT Scan was interesting.. the cool thing is that it is definitely kid friendly with pirate and castle murals all over and a ships wheel on the scanner.

He was so tired that he crashed rather quickly that night. Wednesday was another big day for Lennon. Genetics clinic...really just meant going over his urea cycle disorder, the history before diagnosis and everything that happened afterward. After that we had "teaching" about liver transplantation.. most of it was not new but I really liked how they explained it all..anyway.. after that we had a meeting with Hepatology (liver specialist)...not really eventful.. so the next appointment was with infectious disease which covered exposures, live viruses and other things I can't remember. The last test of the day was Cardio which he had an EKG and an ECHO done. Lennon did well even though he started to get restless... he does not like the goo they put on you during those tests.

And now to today's fun activities.

Today... well what about today... First thing on schedule was hematology. We talked about Lennon's coagulation issue and the doc ordered 20+ tests checking for inborn, inherited and acquired blood diseases and/or coagulation issues. After that we met with transplant and were able to see the CT SCAN pictures. The docs seem confident about doing another transplant but here is where it gets tricky.

Despite the contrast given at the scan the vena cava vein could not be detected clearly or clear enough.

The superior vena cava is the large vein which returns blood to the heart from the head, neck and both upper limbs. The inferior vena cava returns blood to the heart from the lower part of the body.

I was actually trying to find a picture and I couldn't. Anyway, they admitted Lennon because ... a) they want to do an hepatic venogram in the morning and because some of his levels in the blood are off they want to be able to infuse platelets if they need to. Anyway, depending on the outcome of the hepatic venogram it could very well change the way they will proceed in terms of the "technical aspects" of the transplant surgery.

In addition, however this means this liver could be a lot sicker than the biliruben indicates when they do the blood tests.

As we were getting comfortable in the room, and they checked Lennon's oxygen it was at 88. They now are given him oxygen and will order another xray to make sure that all is well.. and that he's doing okay.. I don't know if this answers anything or not but this is our experience thus far.

It almost sounds like that they only way Lennon may have a chance at a good life is to go through another transplant. The doc feels thinks that Lennon would do well. They would use a whole cadaver liver as opposed a partial one as they have done in the past.

So this is where we are ... I think.. I may have missed something.. ok may be not.

Heading to Pittsburgh

2010-08-02T10:24:00.000-07:00

We are heading to Pittsburgh tonight. 3 days full of tests!

Happy 7th Birthday Lennon!

2010-06-24T05:00:00.000-07:00

7 years ago a little boy sneezed himself into this world. I firmly belief that with each child we learn something new about love and life and ourselves. My oldest has taught me the kind of mom I want to be (he just turned 18 on Sunday). My almost 16 year old, has taught me that as moms we do make decisions what is best for them. My 12 year old taught me to laugh and Lennon..has taught me how precious life on this planet really is. All of my children have taught me the strength I truly poses.

This year we have decided to not throw a huge party. This year the oldest needed to shine with having graduated high-school, earning his drivers license and turning 18 all in a months span. For Lennon we are keeping it simply this year... its cake and a movie. He loves Toy Story so I am hoping he will be delighted by watching Toy Story 3 at the theater.

It's challenging sometimes to not forget how precious my other kids are because they don't have the same struggles like Lennon. And yet the reality is they too could be taken from these hemisphere within an instant. With the challenges that Lennon continues to face (now and in the future) I want to be sure to celebrate all my children and let them know I love them but also that I appreciate them. I have been given the bests gifts with each of them, a little more insight each time and a little bit more gratitude and I am honored to call myself their mother.

What we know and what we don't know

2010-06-09T20:42:00.000-07:00

There have been many questions to why Lennon would/does need another transplant. Let me first say that he is medically stable. This there is no "rush" per say and with that being said, we know the following:

Lennon has a clot in the portal vein which is one of those important elements. He also has a thromboses with the hepatic vein and then there was a third clot found but I don't know the state of this one at this time. The issue is because the portal vein is clotted, the body created quite a few more vessels. If you know Lennon, have seen him you will notice lots of lots of blue lines (veins) on his belly and the back. This happens because the body and liver will work together to get the blood flow going. However, for Lennon this is not the best thing because it has left him with a coagulation disorder and at a high risk for bleeding. To put it in other words, the veins can be compared to when we get hemorrhoids, excess stuff going on. This means that we have to be watchful for bleeding at all times because he could bleed from his tube, internally which he would vomit or defecate out.

We also know that from before when his EBV levels were high that he has dealt with and deals with hepatitis and that his liver is working towards cirrhosis. Cirrhosis occurs in response to chronic damage to your liver. With mild cirrhosis, your liver can make repairs and continue its role in the body. But with more advanced cirrhosis, more and more scar tissue forms in the liver, making it impossible to function. Some of the symptoms we will be watching are :

Fatigue
Bleeding easily
Easy bruising
Fluid accumulation in your abdomen
Loss of appetite
Nausea
Swelling in your legs
Weight loss

I also wanted to add that the ultra sound last week indicated no fluid but rather enlarged organs which is good and bad.

Now that we have this information we talked more about the transplant. What are the chances of him surviving this third liver transplant. Well the fatality rate is 10% for most first-time transplant patients. Lennon is somewhere between 30-40% according to UVA. Which leaves us a little bit in the quandary because we really need to evaluate if these numbers are worse the risk of loosing Lennon during the surgery, or if we should simply enjoy life while we can! This weighs heavy on my heart.

There is also conversation about sending him out of state. Here is why. Our local fantastic hospital pretty much only handles first time transplant patients. Cases like Lennon where there is a lot of scar tissue and additional routing issues with veins etc are often send to specialized hospitals. The closest (and biggest) is in Pittsburgh.

The decision we made for now is to move forward with the evaluation from the other hospital. The thing about it is that the docs now need to write letters for insurance approval as well as to the hospital who may take the case. It also means that if the other hospital (which may or may not be Pittsburgh, could be Miami or one other one - though the leaning is towards Pittsburgh) will need to accept Lennon as a case. From there we have to schedule an evaluation - this means travel for Lennon and myself and staying in Pittsburgh for the time required to check Lennon out - generally 1-2 weeks.

Since we are worried about having to make a decision, I am trying to hold of on any medical decisions until the other hospital had a chance to look at Lennon's case and do their evaluation. They may have different numbers for us. But this will be a high or higher risk surgery without question.

This is kind of what we know right now. The docs did say that Lennon could be the way he is for 1 or 2 years maybe even three. They don't want to wait with the approval or evaluation until he's too sick (gosh I love them). So we will move forward with the tests and go from there.

I still have a difficult time to wrap my head around this all. The state where Lennon is, the decisions that may need to be made. Once again we are reminded to be grateful and to not take things for granted. Appreciate what we do have, dream for what we want without hate and judgment.

I will leave this for now, knowing that I have him for this minute. Honoring and being grateful for the fact to be his mom, to have my other children, to be surrounded by people who love and care for us.

It is one day at a time - each day filled with love and appreciation.

Milestones

2010-06-06T19:36:00.000-07:00

We all acknowledge that our children have milestones at certain ages. When they start to crawl, walk, talk, switch from the bottle to the sippy cup. Lennon has reached most of these..well he still drinks out of a sippy cup for travel reasons though he's capable of drinking out of a regular cup.

Lennon is not fully potty trained and its been a battle I have chosen not to fight until Lennon was ready. With all the medical issues there was no sense or need to push it. We also didn't know if he could tell when he had to go or not. Sometimes he could and would while most times he wouldn't.

It's one of those milestones I didn't think I would ever see and I had accepted to be what it is. Lennon always seems to amaze me one way or another.

Yesterday, Lennon took his diaper off and put on his shorts. He used the potty every time he needed to go. So today we decided to encourage him to do the same again and Lennon did not have one single accident. He was so proud of himself every time. Way to go Lennon!

I still won't push the issue over night as he is hooked to his feeding pump and if he had to go, he wouldn't be able to do so. Travel may seem a little tough too though we had noticed that in the last few weeks if we were out and about he'd used the bathroom. I don't know if he could hold it however half way into town. He is taking medications that help him urinate and such. Anyway, tomorrow I am shopping for big boy underwear with spider man and sponge bob!!!

Oh and by the way, sometimes when Lennon is in a mood to respond and you ask him where his sense is, he will tell you its in his brain!

Heading into a similar journey?

2010-05-24T15:33:00.000-07:00

Last week we received some good news. Lennon's O2 was 100. It hadn't been that in a very long time. He gained weight and is now a whopping 51 lbs.

Today we received some not so good news. The past few weeks the docs stopped Lennon's aspirin regimen and added a vitamin k shot due to all the bleeding/bruising Lennon was dealing with. They checked his factor 5 and factor 7 levels last week, thinking and hoping that his blood is stable and that the liver is fine. However, today I learned that the levels were low and that this indicates the liver continues to be ill.

In addition, the acites in his belly has not gone away, perhaps it has gotten bigger. The docs feel that while they could drain in, he is not a good candidate for a shunt.

Next week they are doing an ultra sound to check on the fluid and the clots that were noted in the portal vein and some other areas.

What does this mean? This means there is already conversation about putting Lennon back on the transplant list ...with low priority for now until his health declines more?! I will know more on Wednesday.

My thoughts are jumbled and my heart aches. Lennon looks so good and is acting so healthy. Its hard to fathom that Lennon is ill and that once again we are facing another difficult journey...

Half Way There

2010-05-11T20:44:00.000-07:00

I am so excited! I am halfway to my fund-raising goal for the UVA Children's Hospital. There are still a few weeks left and I hope I can get as close as possible to my set goal. It absolutely means the world to me, and I am oh so grateful for the support not only in Lennon's honor but in all the other children who have lived there - long or short term!

It is a place where amazing things happen ... and sad things happen... we have been on the edge of both.

A heartfelt thank you from me to you!

http://www.firstgiving.com/lennon

Happy Mother's Day

2010-05-09T05:29:00.000-07:00

This year Mother's Day was a tad less stress like compared to last. The sounds of my boys wishing me Happy Mother's Day was like a serenade.

Lennon who came home on Friday - so excited with plant, necklace and picture of him - to give to me for Mother's Day - was the loudest. In light of it all, my oldest is graduating high school on the 22nd of May (turning 18 in June). This is a big deal and I am glad that at this point is not being shadowed due to medical complications!

Anywho,

Happy Mother's Day!

Walk for Kids 2010

2010-04-23T08:00:00.000-07:00

In honor of Lennon and so many other kids that spend time at UVA I am participating in the Walk for Kids at UVA on June 5th!

Many of you know that Lennon has spend more than 35 times in the hospital since Aug 2007 -- you have endured the journey near and far-- we have met many other kids who need the communities help - they do tremendous work at UVA. If you like to walk with me - let me know - if you just want to donate.. that's fine too :) Thanks!

To donate:http://www.firstgiving.com/lennon

For more information: Walk for Kids

If you don't like to enter credit card information online, you can make checks payable to : UVA Children's Hospital and contact me for mailing address!

Have you noticed how quiet its been?

2010-04-20T07:19:00.000-07:00

Let me tell you that Lennon despite it all is doing really well. Our dr. office visits have been greatly reduced but we still have weekly lab work that needs to be done. Lennon is enjoying school and seems to be learning some but often needs reminders to follow his task... similar to ADHD but there is more to it than that, I think.

Lennon is so funny and I wish I could share videos of him of the things he does and says. He's been pretty hyper and open this past week but funny too. He's been very well behaved and really doesn't get in much trouble unlike his siblings. Usually when I ask him to do something he says: "Ok Mamma, I will do it".
When I ask him if he needs to be changed (potty training is an ongoing process) ..."Nope I'm fine" but the whole house reeks :) Did you make the mess? "Yes I did" ... well at least your honest... "Yes at least I'm honest".

This past few weeks I think he's been full of LIFE! Yes, how wonderful to say that he doesn't appear sick and that he's feeling well and that he's simply just enjoying minute to minute. Of course, having a routine helps with him A LOT because we notice on days where it isn't routine... its tough on him.

So in the mean time, we take every day as it is, even know in the back of our minds, we know he could turn the tide. We pray, we hope, we dream, we belief that he's going to be okay - whatever that may mean for him!

It's been quiet

2010-04-06T20:56:00.000-07:00

because Lennon and his brothers went to their dad's house!!! This is good but also a difficult experience for me because it gives a lot of room for thought that I don't usually have much time for. I am humbled and often reminded about how lucky he is and how inspiring he can be. Stories in the facebook world, or even on the tv remind me that he is doing well but it doesn't take out the fact that he's still sick and still battling for his life, silently.

Why silently? Let me recap.. Lennon's EBV levels are still up quite a bit and the doctors wanted a ct scan. The result is that Lennon did develop some lymphnodes that essentially are a cause of concern as this could mean he may develop PTLD (post transplant lympho-something disease). There was a discussion on how to proceed and the idea was to do a biopsy on one of the lymphnodes, essentially the largest one. Well, when we went in for the assessment, the dr. decided..lets not do the biopsy. Why? Well its simple...Lennon looked (and still does) really really good, he doesn't appear to feel ill ..was active and interactive with the staff and the lymphnodes are rather small. So we went home...

Lennon is enjoying school though he doesn't talk too much about it.. he is still very focused on his video games and the newest fascination...army dudes. He's still very much focused on death and dying and its difficult because I don't know how to approach it..do I leave it alone? Part of the problem is comprehension on Lennon's part...the severity or the reality well not sure any 6 year old truly gets it.

So I am happy he's doing well, but I am cautious about letting down my guard...feeling and knowing that things could turn.. the fact that he has the opportunity to spend time with his dad (and his brothers) means a lot to me..not because I get a break (though that is good too) but because it gives him some independence away from me.

As I sit her tonight viewing statuses, knowing that my nephew is fighting for his life and watching television I am grateful, I am humbled. My thoughts go out to my nephew and his family as he's fighting for his life. It's difficult not knowing what is wrong and its even more challenging to be patient. My thoughts go out to my aunt in Florida as she is recovering and friends who have family members fighting for their lives every day. I think about each and everyone of you!

While the last 5 days were very quiet (though I was battling a terrible cold) I am ready for all the kids to return and bring the noise back! I will never know what the future will hold, but I can live today!

Hate waiting for results

2010-03-20T18:35:00.000-07:00

On Friday, I received a phone call telling me Lennon's EBV levels are through the roof and the Dr. want a CT Scan to check for lymph-nodes. Lennon did great during the process and even with the fact that the contrast dye infiltrated through the vein in which his IV was in. We had to check for circulation and make sure that blood flow was present as his arm was rather swollen from the dye. I am happy to say that his arm today is back to normal.

However, I can't help but wonder what the CT scan showed and if we have to worry about a Lymphoproliferative Disorder . I can only hope and pray this isn't the case because according to this article: Lymphoproliferative disorders are among the most serious and potentially fatal complications of chronic immunosuppression in organ transplant recipients. Another article here discusses the PTLD more in depth. Seriously?

What has been done so far is that we reduced his immune suppressant medication. The next step is to go back to the Pic Line or other permanent type of access to give him his gancyclovir through the IV as opposed to oral/g-tube. This is in the talks with the docs right now and I won't know about this until I suppose next week.

Again we find ourselves in limbo about diagnosis and prognosis. I am trying to maintain calm, collected and 'just wait for the results' and hope for the best. I suppose I can't really elaborate on much more until I know 'something'.

Painful reminders of not being super-mom

2010-03-16T20:15:00.000-07:00

Tonight I was painfully reminded that I am human (who would have thought it?) and that at times I don't have it all together. A small mistake made Lennon cry out, his belly hurt and vomit. Normally I would panic but one look at the feeding pump and I saw the problem... I forgot to change his rate from the day feeds to his night feeds. Lennon the trooper...went to the bathroom...got undressed...got cleaned up and is back in bed, while I'm sitting here thinking how did I miss this and why didn't I pay attention to it? So yes I recognize I am human, but I'm still going to beat myself up over it because it didn't have to happen.

The other day I got into it with one of my other kids because I was told I need to do a better job watching him, so that Lennon doesn't go into his room. Say what? Are you serious? It's not like this is a big house, and oh yea I do watch him (and Lennon was in his room at last check). I am still baffled by this a bit...though I recognize its part of the teen turning adult...but yet again I am baffled..has he not been here?

Perhaps it is because the schools are giving me grief of allowing his private duty nurse to be with him. We were told in the meeting that if he has a private duty nurse that they couldn't do anything for him and that the nurse has to handle everything. So if Lennon cuts himself...the nurse is in charge...no one will step forward to help other than calling 911. If Lennon has a dirty diaper, they can't change him but have to wait until the nurse gets there. I keep thinking I'm making this up, but I wasn't by myself in the meeting and I know I wasn't dreaming it or imaging it. It's like what the hell. I talked to the nursing care provider and even they are like this is incredible and ultimately the bottom line is...its about money. Why is it about money? Because if nursing care is provided by a private provider, than the school isn't getting paid for it by doing the same things. It's a circle and we all are shaking our heads. This morning we went into school, to make sure that staff who will be handling the feeds knew what to do and discuss what to look for in case his ammonia is up. I want to be vigilant about his care, but I don't want to be over-paranoid and I don't want the school to be overly paranoid either...just do what a school is supposed to do...teach my child!

Due to this no-nurse in school dilemma, I will be left without a nurse on Friday. Lennon is returning to school Thursday (yay) and so care will not be needed until he returns from school (12 p.m.). I have nothing against the nurse, and I understand that she lives about an hour away. At the same time I will need to shift/change my own schedule...did I mention I am in my internship? I spend an hour talking to the guy who manages the nursing care, laying it out and clearly Lennon qualifies for nursing care not because of my schedule but because of his needs...because of his state of health...because of his medical challenges... though it certainly adds to that I am able to do the things I need to do.

I try to keep things together...I try to make sure that all kids have attention...I try to make sure my relationship has attention...I try to keep my business going.. I try to manage/incorporate my internship..I try to stay on top of my school work...and tonight I just don't have it together!

Thanks for listening!

Some fun and some challenges

2010-03-15T06:44:00.000-07:00

On Saturday we took the whole family to the Monster Truck show and let me tell you that Lennon was elated and excited. He could not wait to get there (he was talking about it all day). He really liked the light show (the trucks were making their entrance and being introduced) and the fact that one of them fell over doing a trick. he loved the cotton candy and he loved the popcorn. I remember sitting and reflecting that a few years ago this would have been impossible to do because it was challenging to take him to places without 'crashing' into a high ammonia level or simply because he couldn't sit still for so long. He stayed in his seat just about the entire time and smiled from ear to ear. Once again I caught myself in awe of him, his will to live and what appears to be a carefree attitude.

Today is going to be an interesting day. Lennon already was at UVA getting his labs drawn for a weekly check on his levels and here shortly I will be heading to a meeting with the school to get him re-enrolled. Though I am baffled of why this meeting. I told him he was ready for school (again), I told them he will have nurses with him (shoot he's been approved for nursing care since he medically qualifies no matter where he is) and I told them that he needs feeds at 10 a.m. (even if they are only for 30 minutes). It's what I want, what Lennon needs anything else they need to take on with the nursing care provider and the doctors. The docs and nurses at UVA are awesome and baffled by all this 'drama'. Though part of me certainly understands the legalities of it all, but how much more sure do we need to be? Do they care about Lennon, yes of course. I just never understand why these things are so difficult. So I have no idea why we are having a meeting, but we will have this meeting.

There are some days I wish I had the finances and the patience to home-school but unfortunately I'm just not a person that could do that. It encompasses much energy that I am not sure I have or I can give. Working (my business), going to school from home and raising 4 kids often takes out much of my energy. I often feel I am not doing enough, but then there is the question how much more can I do?

I was happy to get the whole family out on a night together because this don't happen very often.

Angels Who Care For Us

2010-03-10T08:22:00.000-08:00

Angels Who Care For Us

Caregivers are Angels with Halo's inside,
they give us Help and Hope and in God they abide.

Caregivers are Angels because of their Love,
They always Encourage and look for Guidance from above.

Caregivers are Angels with a Gentle Touch,
they Ease our pain and Understand so much.

Caregivers are Angels through Faith they inspire,
they always Believe in Miracles and seemingly never tire.

Caregivers are Angels who always Endure,
they Understand every need and administer God's cure.

Caregivers are Angels throughout the night and days,
they have great Courage, but never sing their own praise.

Caregivers are Angels who are great Friends,
their Hearts are steadfast, because their love never ends.

Caregivers are Angels because of their Spirit,
they posses the gift of Healing, they can not deny it.

Yes, Caregivers are Angels with Halo's inside,
dividing darkness from the Light that they can never hide.

Thank God for Angels Who Care for Us.

(Author Unknown)

*********************************************************************************

We are trying to get Lennon squared away for school but the school has to make sure that everything is set for liability and legal reasons...blah blah blah ..so it will be another week or so before he can go back. This process is entirely too frustrating for me at tiems.

Lennon is a little emotional and tired today but overall seems to be fine. He's been enjoying his video game time and time outside on the trampoline. It's beautiful to watch him play with his imagination which is "a new" thing. For some children it comes naturally at a certain age like 3 or 4 ...Lennon is 6 3/4 (almost 7 in a few months). He seems to be happy for the most part and content, still wanting everyone's attention, well primarily his brothers.

I'm happy to see him to do so well, but I can't shake the constant worry about his health. I try not to dwell on it, I try to take each minute for what it is and love that he's funny, happy, playing. I hope for a miracle to make the clots and collapsed veins to heal themselves so that he will not face any more complications. Given his long history I feel that I can't relax and settle in because in an instant the craziness can come back and it seems I'm merely waiting for it to happen, while life goes on.

Check up Appointment

2010-03-05T20:30:00.000-08:00

Today we had another appointment this time with transplant and gastro. So it seems that no sooner we stopped the IV medication and switched to oral medication his EBV level (Eppstein Barr Virus) went way high again. This means that we had to reduce his immune suppressant medication in hopes that his own immune system is strong enough to fight this EBV. Lennon will require weekly blood tests to check his level and see how they are fairing out. If they do not go down and/or he becomes more sick they will do a scan checking for lymphnodes. This also may mean that he's going to get another 'permanent iv line' and go back on IV medication, but everyone agrees that this is not what we want due to the high infection rate he has with these things.

On the positive note, Lennon has been cleared to go back to school and I hope to get him back beginning on Tuesday. Will have to make some mad phone calls on Monday i.e. school, nursing care provider etc. Overall the docs were happy with the way he looked i.e. active, no jaundice etc.

It's interesting because Lennon is still quite moody and concerns came up that his ammonia could potentially be elevated but no other signs are present for this. My ultimate thinking on this is that we have had a new nurse for two weeks now, and he is STILL testing, manipulating and seeing just how far he can go and push her. It will be interesting going back to school as we are going to see if the nurse is or will go with him, how it will be handled by the school, insurance etc. though the thinking is that if he's approved for x amount of hours it shouldn't matter...but I don't (at this time) have a clue about this and will be interesting to find out.

This is all I have for now/today. I've been super busy with my business and start new classes on Monday.

I said I would tell ya the good stuff

2010-03-01T20:51:00.000-08:00

Lennon's pic line came out today and man he's such a champ. He's doing so good its difficult to fathom he could turn ill again and so I try not to focus on this so much. He now has a new (additional) nurse who he's given hell to..well lets just say he's making her work and testing how far she will let him go...in other words...some training still required in being assertive and not letting him run the house or my weekends are going to be insane..

I am hoping that he will return to school soon and should hear about this tomorrow (crossing fingers and toes).

Some days are diamonds, Some days are stone

2010-02-23T18:28:00.000-08:00

Quoting John Denver today!

I was reading through the comments today and yes my emotions and my stress level are stretched probably to capacity on most days, as I am always on edge about the next second, which seems to be evidenced this week with a headache/migraine that doesn't want to go away. Of course, in addition to Lennon's care there is other real life stuff going on adding to the mix of things.

Yesterday, Lennon cut his finger on a nail on a cabinet...nothing dramatic perhaps for you and me, but for someone who has coagulation issues and clotting either does or does not happen this can be challenging at best. Lennon was a trooper while the adults in the house were a bit panic stricken but we maintained and did the bandaging, and watched very closely. Thankfully the bleeding stopped, but this morning, when we took the bandage (gauze and tape since Lennon will not keep on a band-aid) it of course started to bleed again because as the gauze dried in with the blood it pulled the scap/clot right off. So we bandaged back up and are leaving it alone (sort of). We are keeping an eye on him and what he does with it.

He was a little tired today, took a nap and perked right up. Now he's in bed sleeping like an angel. Today I observed Lennon differently. I am used to him being emotional in order to get his way or simply because he isn't feeling good. One of your dogs got off his chain overnight and it appears that he was hit by a car. This afternoon we dealt with the aftermath of looking for our dog, finding him in a ditch and explaining to the kids what happened. I was talking to Lennon's brother (Jarod) and Lennon asked what had happened. I told him that Draco got hit by a car and died, and this might sound harsh but I just couldn't sugar coat this one.
Lennon yelled : "that's not fair, he's never coming back" and with that buried his head into his blanket.

I still have a difficult time putting into words how this affected me. I know that Lennon was close with Draco (not as close as with our other dogs, but close). He loved that dog. At any time he would be in the back yard playing with all three dogs. He literally watched him grow from puppy stage to big dog. It is a sad day in our home. We picked Draco from the first puppy litter Dakota (mom) had with Tank (dad).
I don't know how this will affect Lennon if at all in the next coming days and how I will be able to react to it. With that said, I will say good night and thanks for reading as always.

Petra

What we learned today

2010-02-18T10:07:00.000-08:00

Lennon had his weekly appointment today and so the word is that Lennon has chronic liver disease caused by the lack of blood flow to the liver. This means that the clot in the portal vein, the collapse of the hepatic vein and the clot in one other vein do not allow enough blood flow to the liver. This means that we can only hope that these clots perhaps will eventually go away, that they will not get bigger or that more accumulate over time. In hopes that the liver can heal itself throughout time. This also means that he's at risk for developing more clots, experiencing liver failure more and more with time and that there is that chance (a good chance) he will face another transplant at some point in his life if the clots do not go away on their own.

For now he is well. His protein is restricted and it will continue to be restricted until further notice (as long as those clots exist and liver failure is present). The IV meds should hopefully be converted to oral or g-tube as it is in his case and he could potentially be back in school within a few weeks. It will be discussed, evaluated and based on Lennon's health. If he cannot handle it or if it isn't safe for him, he will go back to being homebound for education. Quite clearly, the doctor does not want him on the monkey bars, but that is easier said than done with a child who LOVES to climb. So his medical is being managed and maintained. And we are ensuring that he has the best quality of life (at home, with or without school), but he will have it. The docs will continue to watch him closely, check for jaundice, rashes in the mouth or anywhere else and so forth.

And this is all I have right now, I think. Lennon is a little moody today, but we are allowed a day where we are not on our top game.

*** Adding on to this post***

So it came to my attention that I should perhaps let everyone know that Lennon is on a medication regimen that is a blood thinner (aspirin) and should in time remove the clots. However, Lennon has developed a coagulation problem in his blood which leaves him to be at risk for bleeds. Thus when he falls I have to check him to see how it is bruising. He also tends to get minimal (not gushing..just kind of there) nose bleeds and minimal bleeding from his mouth. For this reason Lennon takes vitamin K (something for thickening the blood and reduce bleeding risk). Management of the aspirin and the vitamin K are done closely watching his blood level and adjusting his medications as needed.

It is quite apparent that his road of medical turmoil is not over and that complications are anticipated at one time or another. The complications can be a variety of ones. There is not only the potential that if the liver continues to fail due to the lack of blood flow he is facing an additional liver transplant, but there is that risk of bleeding. There are many facets of Lennon's care that cannot be predicted or speculated on.

Of course this doesn't mean I don't worry (quite the opposite) but I also don't want to be in panic mode when I don't need to be. The doctors are keeping a close eye on him, the nursing staff is taking care of him, and we at home watch him closely, paying attention to every mood swing, behavioral episode (for a lack of a better word) and the hyperactivity if it elevates.

I have never nor will I ever turn down any prayers, positive energy or anything else that is beneficial in our journey and foremost in Lennon's journey. I will continue to write posts about the good days and the bad days. There will be days and weeks perhaps of silence, but know that in the day of silence it is then when we experience normalcy.

Quiet

2010-02-15T03:50:00.000-08:00

It's been seemingly quiet at the home front without too many changes, no concrete results of what happened last month or what is going on with the liver. I know that the EPV (Eppstein Barr Virus) numbers are incredibly elevated and we are hoping that the IV medication is taking those levels down.

This week we will be discussing taking out that pic-line and even though we've had central line before I'm glad when it's out and gone. If you remember he had two infections - one with his port (yeast) and one in the central line (ecoli) and so I'm a little nervous even though we once again do what needs to be done.

Lennon is quite spunky these days, funny, goofy, ornery, loving, full of himself. Yesterday he made me several valentines while I was laying down on the couch. Once I got up, he said "Mom, you forget to make my valentine". So we sat down together and I created his valentine.

Follow-Up with the Doctors

2010-02-05T17:52:00.000-08:00

Lennon is still on IV medication to bring down the EBV (Eppstein Bar Virus) levels in his system. His ammonia has been maintaining at 75, which in terms for Lennon is probably normal. All but one test has returned from the mayo clinic and they all are negative..so still waiting on one more result and well then what? I don't think anyone knows. I know there is talk about doing another biopsy in a few weeks to see how the liver is looking then now that he's been changed to IV meds. In addition, they are going to have to think/talk about taking the pic line out. I remember the last one he had and despite stitches.. well it just fell out...not exactly something I want to happen now that he is having some coagulation issues (which he didn't have the last time when it just fell out).

This is kind of the medical stuff.. don't know much of anything other than he looks good. And I mean he really does look good! We have a behaviorist schedule to come visit next week, but with the way he has been I wonder if that is even going to be relevant..and then again we do still deal with aggression and other behavioral stuff. Overall though he has been sweet and just the cutest thing to watch and listen to...sometimes I wish I had an video cam going all the time or readily available because some of his moments are so precious. Tonight he read me a story (instead of me reading to him), and he played with his cars, even if it was for a short while..he played nonetheless.

He's been very polite too when asking for a drink, saying please and 'thank you mommy'. At the moment he's watching a movie with his brother. So I leave with a note that he is doing well, even if he is not all the way out of the clear...then again he could be...one can never tell.

Ch-Ch-Changes are constant

2010-01-29T17:07:00.000-08:00

So today we got a phone call ..some changes on his IV meds in order to bring down the number of EBV cells (eppstein bar virus) and then get that under control. Further, an additional mentioning of another biopsy will perhaps be necessary to "look" at the liver. And if that isn't enough, the dr. mentioned that Lennon will more than likely require another transplant in about a year..

Honestly, I don't know how or what I am feeling, nor what I am supposed to be feeling. How am I, as his mother am supposed to react and handle all of this again and again...seriously? Another liver transplant?

So here we are with maintaining medication via IV at home, change in his diet and feeds and the amount he needs to drink. Watching carefully for lethargy and behavior changes. Keep an eye on any lymph-node developments and watching him slowly master mile stones typical for younger children. His speech still delayed and his emotional stage still much that of a 3 or 4 year old. But in the past weeks he's put his own pants on..and that is success.

Normalcy ...I do I love thee

2010-01-29T06:55:00.000-08:00

So we have been home since Monday and I'm super busy catching up on things and getting organized (again). Lennon is doing really well. He had a dr. appointment yesterday and his labs came back ok except for the EBV (Eppstein Bar Virus) that went from 1300 to 2300. There is still concern that Lennon may still have PTLD (as mentioned in a previous post), but they don't know for sure yet. His other numbers look better though indicated still some amount of "injury" to the liver but again we are also still waiting on test results from the mayo clinic. \
Lennon's ammonia is a steady 75, which is better than 100 but still above normal...but then again this could potentially be normal for Lennon.

So for now we are home experiencing normal until we are told otherwise. I am definitely ready for those results to come in ..no matter the answer ..because it's nerve wrecking to think about what the future may entail..I have a lot of worries and concerns in my head and my heart and once again we are taught the lesson that life is too precious. Lennon requires a lot of care but that of course doesn't mean I love my other kids any less, they just tend to fall to the side though a) because they are not sick and b) they are older. But I do cherish every conversation, hug, kiss and I love you's because well one never knows.. I remember a time where I turned my head while still holding a conversation, those days are gone (unless I am in the middle of something and being bombarded). I know try very hard to make sure that Lennon's brothers are acknowledged, the oldest is turning 18 this year and is graduating from high school. He will move on to do his own things.

I have learned important life lessons in this journey that has not finished yet ...

thanks for listening

Today Lennon is being goofy

2010-01-25T09:54:00.000-08:00

I am currently watching Lennon be silly and goofy, singing and dancing. It is hard to fathom that there could be something seriously wrong when he looks good and behaves normal.. yes singing and dancing and mooning (yes mooning) is normal for Lennon. Oi!

This morning we learned that the test results they are waiting on probably won't be in for another week. They are checking soft muscle and some other dna testing to perhaps figure out, narrow down what is going on with him. In the mean time they are now trying to get together his IV meds so that we can go home for at least a few days, which could happen today or tomorrow. Lennon will have to come back weekly for lab work and checking in to see how he's doing.

Lennon's belly looks really good for a change. Some of the ascites has gone and his veins and vessels don't show as much anymore. You can still see a lot of them, which often reminds me of a map with a bunch of blue lines. Lennon is quite the ball of energy today, which is good but also nerve wrecking ..so far today he's done belly flops on the bed, attempted to fall of the bed and ran around in this small room.. yes I would say he's feeling good!

Of course that doesn't change the fact something is going on and something is wrong, we just simply don't know what it is ...yet. I hope that they find an answer. Now that they are talking about releasing us, it also means when the results come in ..depending on what they are...may mean being re-admitted for new and/or additional treatment.

This is all I have for now. Thanks for staying tuned to "as Lennon turns the world".

Morning folks, ready to be frustrated along with me?

2010-01-22T07:21:00.000-08:00

Well here's the thing..now they aren't sure that Lennon has PTLD at all and send off some labs to the Mayo clinic and some local tests they can do to check for autoimmune hepatitis issues.. So to recap first it was either rejection or failure.. biopsy indicated that Lennon's liver has some dead cells in the center of his liver...why? Well because there is another clot in one of the vein/artery type plumbing...ok they ballooned that while Lennon was in biopsy..good..blood flow is going...there is hope that those dead cells regenerate ..the liver a marvelous and so important organ.
The two other sections show inflammation and/or infection, but Lennon has not or is not running a fever.. so there is lots of confusion going on there. Additional stains of the sections they took from his liver.. indicate that he may not have PTLD but some autoimmune issue...ok I am still confused on this and until results get back (sometime next week?) we don't know a much of nothing.

His ammonia is still up so they are wondering if Lennon has some oozing in the stomach and that blood that may be present can raise the ammonia..but I didn't notice anything so they are gonna add something to coat his stomach more ..in addition to the prevacid.

Overall, Lennon is good...just bored out of his mind I guess...stuck in this room (because we are still under isolation due to the VRE) ...so video games can occupy him some of the time... the teacher comes he's real happy and he doesn't want her to leave. So we play toot and otto and we read "the very hungry caterpillar" and allow him to play video games. He's feisty and he's "done" with it all I think. He hates them messing with him and will fight them and that can make it tough.

Anyway, until they know anymore about what might be going on, we will live here at UVA for awhile and manage life as best as we can.

Still kinda inconlusive

2010-01-20T15:53:00.000-08:00

So the docs had their meeting today and it still seems somewhat inconclusive and they are waiting until all tests are complete. There are a few that won't be done and complete until tomorrow.. so the game plan for now is to change one of his meds from po (oral) to iv ..which is the valcyte...it may be that his body is not absorbing it properly through the stomach. They are also reducing his immune suppression medication a little bit, which is sort of a tight rope dance due to the fact that without it he could potentially reject the liver. So until they figure out the details and technicalities, we will be here in the hospital allowing the docs create their magic. Hopefully this method will work and in a few weeks we will be home, but for now we just hang out and try not to go crazy.

And hopefully we will have a more conclusive report tomorrow or Friday!

A more comprehensive report on PTLD

2010-01-19T19:28:00.001-08:00

So I did more research on PTLD and found a more understandable and comprehensive report...

You can check it out here: http://transplantbuddies.org/library/ptld.html

Posttransplant Lymphoproliferative Disease

2010-01-19T16:58:00.000-08:00

Here is what we know:

Out of the three sections they took from the liver in the biopsy, one of them has dead cells and the other indicate some sort of infection. It appears it is not at all what the docs expected and have a meeting planned for tomorrow. The thing that appeared in the preliminary results is Posttransplant Lymphoproliferative Disease(PTLD), however they are NOT a 100% sure that this is what it is. They also said to feel free to look it up but to not worry or scare ourselves too much because it seems that this (if this is what it is) than we caught it early enough, though I am not sure what that means either. In reading some information the treatment is additional medication, removing some medication or even chemotherapy. The doc will come by in the a.m. to talk to me to give me more information and then everyone will gather at 1 p.m. to figure out what exactly is going on and what are they going to do about it. Here is the link that I found that seems the most comprehensive about this disease http://emedicine.medscape.com/article/431364-overview.

The thing that throws me the most is that the article states its uncommon .. and it relates to the Eppstein Barr virus (EBV). Which I know those numbers have been screwy since September. One of the meds they have already removed because of this is the cellcept. I quote"The more intense the immunosuppression used, the higher the incidence of PTLD and the earlier it occurs."

So if you want to know more, read about it but I won't know anything more of for sure until tomorrow sometimes.

Ugh ..seriously it would be Lennon who develops another uncommon thing. Well I will end this for now ..reading more about it..they did say not to think the worst when reading about the PTLD because Lennon is (if it is this) at the beginning stages. Again I don't know what this will entail for treatment nor can anyone tell whether it is from the donor liver..or it just developed etc etc.

Biopsy, Pick-Line and MRI

2010-01-18T15:05:00.000-08:00

Lennon did well with the biopsy and they got three good samples. They also placed a pick line as he is running out of places to draw blood. In addition, they managed to get an MRI done which is good as that means we don't have to come back for another sedation. By tomorrow we should know some preliminary information from the biopsy and also some info about what the MRI showed.

Lennon is a little wet on the lung which comes from all the blood products he as received and they are gonna try and get rid of it with lasix. He sounds a little raspy and needs to cough a bit but he has a mind of his own. He doesn't want the pulsox (sp) on or the oxygen on his face. He is in little bit of pain (in the neck) as that is how they went in to get the samples of the liver but also his arm where the pick line went in.

Overall he appears to be doing well.

Uneventful Day

2010-01-16T20:40:00.000-08:00

Today was uneventful...let me just say that Lennon without his tenex during the day is more than a handful (which he did yesterday) and with tenex he is a handful. What is tenex? Well, it is a blood pressure medicine like clonodine, but in children it works for behavioral issues with a less sedating factor like the clonodine. I think the tenex wore off around 3:30 to 4 p.m. which is sorta new but I think the elevated ammonia is contributing a lot and could affect some of the medication he's taking. He was able to play video games today which kept him occupied and mostly calm until I made him take some breaks in between. He was not a big fan but he dealt with it.

Lennon did acquire a cold which doesn't surprise me but hopefully it won't affect him too much other than just a runny nose. So in all we have just been hanging out trying to stay entertained.

The biopsy is scheduled for 10 a.m. on Monday which means tomorrow they will do a full lap work up and see what he may need as far as plasma and platelets. And then it will just be another day that we will hang out.

Overall he is in good spirits and coping being cooped in the room. He's still under isolation because the VRE is still lingering and has not moved on to better things.

I know some folks are concerned how I am holding up, as well as everyone else. I'm ok! I am just taking it minute by minute trying to get through the day. I don't want to speculate on the outcome of the biopsy too much because that wouldn't do me any good right now. I am taking things as they come. I've been trying to keep busy while Lennon keeps everyone else occupied.

Tentatively we may have some preliminary results on Monday but a full report towards the end of the week. They will keep Lennon for an additional day or so for observation to ensure he doesn't start bleeding and is handling everything okay.

Lennon steps here we are and go!

Plan of action

2010-01-15T08:59:00.000-08:00

The ammonia is back down in the 90's and Lennon is acting relatively normal. He is under isolation due to the still existing VRE virus. After a communication break down that is now fixed they have added medication that should get rid of the ammonia in his intestines. They do not think that the UCD is re-emerging but rather that he is having some sort of liver failure. The word is to watch Lennon closely because he can tip over at any point with quite apparent symptoms of chronic liver failure.

The game plan is to keep him in the in the hospital to watch him.
Today (Friday) they are going to get labs for screening to see what it is today.
On Sunday they are going to check his factor levels (5 and 7 I think are the ones low) and try to stabelize with platelets and plasma. But also check other levels such as cbc and ammonia.
They are trying to schedule the biopsy on Monday which means coordinating with radiology and anesthesia, and again check the levels on Monday to see where he's at. He may require some more platelets or plasma but will need the biopsy within hours of receiving that.

My heart aches because he does look good but the elevated ammonia indicates there is something going on with the liver. He is active and busy and hates being stuck in the room. However, he is being treated as acute and critical because we know he can tip to the worst at any point. I will not speculate on the results of the biopsy and hope for the best. It is minute by minute right now.

The develoments of the day

2010-01-14T18:54:00.000-08:00

So after the last ammonia being 99, a doctor appointment was scheduled with his gastro dr. as well as hematology. Initially I was supposed to be at my practicum site but felt I needed to be in the office today with the docs as there were some questions I wanted/needed answered.

Ultimately, levels ammonia is of concern (many of you know this from post past), but also given the fact that his factor levels are low which of course influences his ptt and inr numbers (the risk of bleeding/not clotting). The conversation is barely in my head but this is what it boils down to:

Lennon was admitted to the hospital to monitor him, his ammonia and his factors. In addition, he is looking at a liver biopsy because the concern is that a) he is having low grade rejection or b) because of all the clotting issues and thrombosis of some of his veins that the liver is slowly dying. Of course I don't want to jump the gun or conclusions and am just taking it minute by minute. However, just an hour ago I found out that his ammonia is now 164. This is pretty devastating news.

Without jumping ahead too much, Lennon may only receive one more transplant to save his life, but this decision will NOT come until after biopsy results. The chance that if the third one would not work and he would get a fourth one are not great. This is pretty harsh ~ but I get it.
I also wanted to mention that the increased ammonia does not necessarily related to the Urea Cycle Disorder but directly to that he may not be able to absorb the required medication for the CPS Deficiency or the other already mentioned issues.

At this point - with reality in my face - I am taking it one second at a time because to do anything else would not benefit me or Lennon. I do ask for prayers, positive energy and good grief I don't know what else. It is a one second at a time that I can function while maintaining strength for Lennon as well as his siblings. I am currently quite numb and in shock and think that it won't hit me until after the biopsy.

Please know that while all of this medical stuff is going on, Lennon is funny, he is playing, he is awake, he is loving and he is ultimately being 6 years old.

We always knew that

2010-01-13T12:50:00.000-08:00

Lennon's ammonia was 99 yesterday, but I didn't get the phone call until this morning. We knew something wasn't right because he was tired, aggressive and emotional (sign something is wrong). So we went to UVA and had his blood levels checked and like I said I didn't get the results until this morning. I suspected as such but I guess part of me wanted to be a fluke or something else. I am a little distraught over it, because he was doing well, the transplant appeared to have done the trick but at the same time we knew it was not a 100% cure. Of course a level of 99 is better than the numbers his body has seen in the past, but with that being said, if he has a healthy liver than any number above norm would now just be as effective or defective (your interpretation) than on anyone else.

This morning I had to keep him home from school and scramble to get his private duty nurse in here because I had a meeting to attend. The issue is had to school agreed & approved that the nurse could go to school, than it wouldn't have been an issue..she could have just met him at school. I kept him home because the dr. wanted him on a 24-hour pedialyte maintenance. I don't trust him going to school being hooked up. So I am a little frustrated because this would have been an opportune time that he could have used a nurse in school. On the other side the company that offers private duty nursing says that if I want a nurse in school ...well that can happen...so they are going to figure all of that out and we will move on from there..

Lennon has another appointment tomorrow with Gastro as well as hematology as he still has ongoing blood issue and balancing the blood thinner with the blood thickener is a tough one...so the lesson ...I don't know.. it just appears that ones again when we begin to relax because things are going well...something goes awry.. I need to remember one day at a time..one second a day

The end of 2009 and Beginning of 2010

2009-12-31T10:51:00.001-08:00

Today is the last day of 2009...and what a year it has been. The year has been an incredible journey of faith, spiritual, strength, courage and hope. Lennon has come a long way, from a little boy who fought to live. But then isn't that his story? He patiently let the higher powers do their work, while he rested and healed not once but twice. Twice he scared us to death of fear, worry and wonders. Today he's energetic (well working on that) and trying to be actives as long as his body will let him. He fatigues quite a bit but what a joy and what a hoot he is. He is funny and witty and while he often expresses "he can't" ..he tries anyway. He does not seek pity, nor is he selfish. He does not see his 'challenges' the way we do. This incredible child..WANTS to learn... WANTS to live.

As I reflect on our year with heartaches and headaches I must note that a wonderful and dear friend passed on. He struggled with his own disease but made his peace with it all. And no matter what pain he may have felt or how people wanted to feel sorry for him, he often would say: "I ain't shit compared to Lennon". As of yesterday he's at peace and pain free, he was one of the biggest advocates in our little town for Lennon, continously sharing his story. He will be dearly missed but always remembered in our hearts and minds. R.I.P John Matthews as you are now able to rock it out with the best of them. Play it and play out loud my friend.

Some things need to be shared, even if they don't related to Lennon, but I think what impacts me the most is the impact Lennon has on people. His story rings true quite shy of a miracle and as we walk our own path of faith, we look around and above and belief. I am in awe of this cihild who I can call my son. I am in awe of his spirit and the life that shines from his eyes. As we close this year, we look forward to the next... what will it bring? No one knows.. it is still one day at a time because tomorrow...we don't know

Much love to all and a Happy New Year.

Sincerely,
Petra

It's back to school

2009-12-10T04:48:00.000-08:00

It has been over a year since Lennon went to school and on Monday we had an IEP meeting and today is the second day of school. Its been a challenging year with many a times me wanting to wrap him in a bubble. Lennon is doing incredibly well and while he still gets fatigued he is extremely excited about going to school. I think he was getting bored at home as I am not much of entertainment, though he sure could keep me occupied but then I would not get anything else done. Until the winterbreak lennon will be gone for about 4 hours (8-12) and perhaps after the first of the year it may get extended, we'll have to see. I think a lot of it depends on his energy levels and fatigue issues he's still dealing with. It is amazing how much he actually WANTS to learn. During the month of homebound instruction I've seen a different kid. I have see a child who struggles but I also see a child that doesn't allow himself to be down and uses what he learns. He currently is trying to learn the alphabet and learning to read. We have magnetic letters on our fridge and he will sound some of them out...A is Apple but he still gets mixed up a little. Some days he gets everything right while other days its like he lost everything he had learned.
He loves to read or be read to, current favorite is still the very hungry caterpillar and this book he can recite from memory. The other book he likes is the Gingerbread man but will tell you he doesn't know how to read it. Counting he does good up to 3 sometimes 5 ..again that changes from day to day and I am not sure why it changes. It leaves me wondering about his chemical balance and the brain damange that was caused by the ammonia on his brain. It is interesting however the things he can do now that he couldn't before. He's also working on toileting which still seems to be a struggle. He will use the toilet in the mornings, but the rest of the day is a challenge as I think that sometimes he can't feel when he has messed his diaper or that he is lackign the feeling that lets him know ..hey I need to go to the bathroom. We have tried the reward system and that was a bust, so now I need to figure other things out.

His feeding tube seems to be going ok even though he's still sore at the site. In time that should hopefully go away and it will not be that much of an issue. The frustrating thing sometimes is that I see him eat .. pickles, chips, oranges, sometimes rice, cheese, sometimes peanutbutter and jelly and sometimes hot oatmeal or cereal. So we know he can eat but there is still that block that allows him to eat more nutritionally and maintain his weight. I think if we were to stop with the feeds his weight would drop at the same time we encourage him to eat (and waiste most of it). That is tough since we too feel the economy on our budget something terrible. I try to maintain positive without getting to frustrated and am at a loss in how to move him forward to start eating substantially. The issue is that he doesn't qualify for feeding program as it is not a physical issue but more of a psychological issue and it seems that x-amount of months down the road I will need to seek out a therapist that specializes in eating disorders to see if at some point Lennon get be free of the feeding tube all together.

Irregardless, he is doing very well, he's excited about going to school and has maintained healhty.

Happy Thanksgiving

2009-11-25T15:22:00.000-08:00

..reflecting on the last year there are a lot of things I am thankful for valuable...lesson's have been learned and new insights have been gained and it was with the support of my family, our UVA family and our friends (online and offline) that I am able to spend this year at home...I hope that everyone has a great thanksgiving

Reflection

2009-11-17T18:42:00.000-08:00

As I sit here I was reminded again that life is too short…tomorrow is the first year anniversary of lennon’s liver transplant and Saturday will be the first year anniversary for the second transplant…I tell you its been a crazy friggen year, but what I am constantly reminded of through lennon’s ordeal…the not knowing if he will be here tomorrow…life is too short to not fulfill your dreams and follow your heart. Lennon has brought forth valuable lesson's despite the heartache and the pains we have endured.

Lennon is the icon for having a will to live. I often think that at any point...when we didn't know and when we knew...he could have left us on earth...but he fought..his spirit was stronger and is stronger than I have ever seen before. I often hear that he gets that strength from me..due to my own personal life story, but his is more than remarkable to me.
Lennon's diagnosis has encouraged me to pursue my dream career ...a counselor to help children and adolescents...and in 9 months I will have accomplished my degree to pursee that dream. He is a constant reminder to stay true to yourself and true to your heart. Nothing is impossible and everything can be overcome.. you just have to have that will

I have been struggling with the book ..and I assume its because I am still hurting with parts of the pain we have endured, part of it the fear that it can change in an instant ...but I know that I must find closure and at the same time I want other people, people of this earth to know that there is hope despite all the heartache..and that ultimately they are not alone in their journey..somewhere out there...understands

I want to continue to thank the people who have read the blog, commented on the blog to ask questions or simply to give an "internet" hug .. or simple encouragement. Life is easier now but it isn't easy by far..there are still obstacles we need to overcome... but it is one day at a time ..one minute a day... lennon steps... we call them lennon steps

Medication and in the future school

2009-11-12T10:48:00.001-08:00

Lennon takes a lot of medication most of them are related to his liver transplant. However, Lennon does have a sleeping disorder in corrolation with behavioral issues and mood swing issues. Last week we went away with the clonodine patch and started a clonodine pill regime that did not work in favor of Lennon. It was a very difficult weekend to get through a Lennon we knew from pre-transplant that made us extremely nervous. He was out of it to say the least, mentally incohorent and just simply not himself. He's speech was out of sorts and even part of his vision appeared impaired, but again I feel that was due to his day medication. So now we changed his medication to something less sedating and that seems to be working a lot better.

On another note, I had a meeting with his school this morning for his elibility meeting but also discussing how to incorporate him back into the school setting. We decided that pre-holiday he would start participating in short acitivities and festivities so that after the holidays (January 4th or 5th) he will start school just like everyone else. This is important for his development in socialization but also academically as Lennon is extremely behind since he lost a year of school in addition to his already developmentally delay. I think Lennon will really like it, be less bored and not so lonely.

In December (the 4th) Lennon's gastro-tube will be replaced with a different type. This one will not stick out 10 inches from his side but be more flush against his stomach (called a button)which will be good and perhaps easier on Lennon. Though I must say he takes really good care of his tube and pays very good attention to it when he's active.

Ch-Ch-Changes

2009-10-28T07:07:00.000-07:00

I must tell you that Lennon is doing remarkably well, rotten ( in a good way I suppose) to the core. He is gentle, loving, kind, considerate. He is also manipulative, moody, demanding. He loves cartoons and video games and thinks that by not playing video games he's bored.. ha I just described most 6 year olds, didn't I? Lennon has matured on some levels which is positive in his recovery, but clearly in some areas he's lacking the 6 year old knowledge, and those are the things I fear will not recover or it will be a long long time.

It is nice to have the ability to 'relax' a little these days without having to be overly concerned over the ammonia, or an infection. However, we do have to continue to worry about bleeding which appears in many ways: a bruise that keeps getting bigger and bigger or as it stands right now a cut on his lip he keeps picking on that keeps bleeding. Last night he coughed and I was worried he'd choke on a blood clot. It is nerv' wrecking sometimes because just when you think, yes we are ok...nope something creeps up to let you know to be on guard.

To top it off Lennon is once again dealing with a cold (thanks to our virginia weather) and its taking him extra long time to get rid of it. The first few days he slept A LOT and then slowly improving with his symptoms.

Another development that isn't a development is his sleeping issues...again Lennon goes to bed at 8 (because he says he's ready and its a good bedtime :o) but is often up til 10 p.m. til midnight or sometimes even later. We are not sure often what to do because his medication works on some days, but it doesn't work on other days. His insomnia of course is keeping his brother awake who must get sleep for school. It's still tough at time, but I am happy to say they are better.

I noticed that my stress and worry level are not as elevated as their used to be and now I continue to the routine but I feel on a different level than before.

I don't know if I will blog tomorrow, but tomorrow is the day that we received the call that Lennon was placed on top of the liver transplant list. The rules were simple, call them if Lennon is sick, if we are out of town or what have you. I remember casually talking about it to other folks, saying yea we can get the call any day...and we waited to me ..it happened yesterday the wounds are still raw from the heartache and yes misery that Lennon had to endure, and certainly I experienced.... but I am grateful and humbled by the experience...

Adventure

2009-10-12T06:48:00.000-07:00

Today we are doing something we haven't done in awhile ~ heading to Blue Ridge Parkway for some hiking, playing and being outdoors kind of fun. We love to head out there, find us a trail and let the kids loose. Lennon used to really enjoy that until his ammonia had gotten the better of him. It seems like forever since we were able to do things as a family and with the kids out of school, well there wasn't any better day. it does look like rain so we hope it holds off ~ if not well we'll find something else that doens't involve the house :o)

Stay tuned as I will update this post later with the events of the day.

P.S. Did you know that October 2008 was the month Lennon was placed on the transplant list?

How things are

2009-10-04T10:49:00.000-07:00

Now that Lennon is doing well, I find that I am less blogging as we are busy with normal life stuff! This is good but doesn't mean life isn't still challenging and instilled with worries and fears. The past few weeks, Lennon has been doing extremely well. We note there are good days and bad days when it comes to his mood and behavior and the wonder is if its related to how he is feeling. The other day as I was getting in the process of getting ready for an event, Lennon and I went shopping. I recall the days (before we knew what was wrong) where I was resistant and hesitant to take him with me because of the behavioral issues or the vomiting or whatever may have occured. These days however, hanging out with Lennon is charming, fun and filled with happiness. He shares his thoughts (to the best of his ability), sings songs, is amazed by the items one can find at K-Mart. As we were walking through the ailes, he exclaimed : wow mom this stuff is fancy. He wants to help push the cart, he wants to stand on the cart to be pushed, he wants to touch everything and take everything in. I remember days where I did not want my children touching everything but as Lennon is exploring the world, I am recognizing his will to live. However, for him to conceptualize living without regret does not happen as that is not in his vocabulary. He simply lives life to the fullest without worrying about tomorrow or anything else. I struggle with this concept as I am still with fear of setbacks. We still struggle with coagulation issues in which he could bleed at any time, we still watch for bruising, checking his temperature, blood pressure just like he was in the hospital. However, none of it has brought him down. We can slowly see the flower blossoming that has waited to grow for so long.

These days Lennon looks forward to his physical therapy and his school teachers. There isn't a day he doesn't ask to find out if his teacher is coming. The thirst of knowledge in him has emerged and he absorbs the information. The hungry caterpillar currently is his favorite book to read and he can tell you the story from beginning to end. However, some things are still apparent. When he is done learning or working, he will let them know. I AM DONE, and if they do not acknowledge this the first time: I AM DONE I SAID. Clearly, he continous to know himself the best.

Sometimes its an eerie feeling when we recall the stress and worries that he endured and we lived in the past two years. Just a year ago, about this time, we made the decision to go through with the liver transplant and we didn't dare dream about the months that followed. November 18th will be a bitter-sweet day and so will be the 21st as the memory is fresh in our memories as if it happened yesterday. And yet I do find that we smile and laugh more, that despite life struggles we are able to enjoy what live has given us, which is live.

As I live in the small town I am in awe of people and still grateful to the friends we have made and are still making. Sure what our family has endured is no small feat and the fact that my other half has to work three jobs to make a living and provide for us is tremendously stressful and doesn't leave much room for leisure. But we don't complain and yet we constantly hear: I don't know how you all do it. We do what needs to be done with the cards that were dealt to us. We are focused on our family each and every child, as a whole and as partners. There is no question about our unity, nor is there any question for the love we have for each other.

My heartfelt thanks to the individual who continues to spread Lennon' story, who has accepted his fate to what it may be...you will forever be in our hearts and hold a special place in our family.

Lessons from Lennon ~ one on one

2009-09-18T19:59:00.000-07:00

Lesson 1

Me: Are you ready for bed?

Lennon: Maybe

Me: What does that mean?

Lennon: that's english mom!

Lesson 2

Me: Are you ready for bed?

Lennon: In four minutes

Me: In four minutes?

Lennon: that's what I said

We still wonder...

2009-09-17T06:16:00.000-07:00

about the ammonia in his system.

So I have been staying away not because I didn't want to write, but I have been busy as well as everyone in our house was sick with the nasty cough & cold, including Lennon. We did an overnighter at the hospital just to make sure that he wasn't developing anything else as he had been complaining about his belly hurting ..on the right side. Yes, you guessed it they were worried about his appendix that apparently was not removed when he received his liver. Sigh

Now with lots of fluid he has overcome the cold fairly well. We are down to doc visits once a month...school has started for him...about 30 minutes minimum everyday until he can tolerate one hour. In addition he will receive OT, PT, Speech and Vision Services...at home
The next step is or rather the plan is to conduct an evaluation to see where he is developmentally, not just because I want to know but because this will help taylor his needs more.

I bet you are wondering about the title of this post ...let me tell you that yesterday I have seen the Lennon I know pre-transplant. His nurse took him into town to take care of some things, and according to her he was very hyper, not listening, unable to stop himself, knocking things of the shelf etc. When came home, he was hanging from the freezer door, disappearing into the front or the backyard and just go go go .. his behavior was very much like when the ammonia was the main cause of his behavior...

I don't think his ammonia is up, but we are planning a trip into town tomorrow to check his bleeding level and we might throw an ammonia in as well ...I am wondering however that perhaps yesterday was the first day in a really long time that he maybe has felt really good? I don't know that I can say how he feels and when he feels good or awesome. I can tell you when he's okay or not so well, but knowing when he feels absolutely good...not I
So I don't know if yesterday was a fluke, or perhaps it was Lennon the way he is when he feels good. I was told that if he's like that...that I am a strong woman...well he was like that for a really long time..uncontrollable, violent, unable to stop, not able to think and acknowledge the risks ..this is how I know Lennon .. perhaps Lennon just took an extensive vacation after the transplant..I don't know ..his behavior will always be a challenge I think.. and some of it can or rather could be controlled with medication...other parts not so much

Overall I must say though he is well..his favorite thing to do right now is play the playstation (all day long). Now we are going to get into a routine and schedule where he will be limited and he has to learn the rules again. We have allowed Lennon to relax...take it easy ...kind of baby him ...cater to him and so forth .. however now that he appears to be home more consecutively he too must learn the rules ..a poster board with times and schedules is going up..little pictures with magnets are being created so that he can visualize everyday and we can change it as necessary.

Sorry for the long break since posts... I have been busy since quitting my job with Lennon, school and other things at home (my business and my book and three other kids )

Hugs

It was another infection

2009-08-19T05:33:00.000-07:00

in the line. I have been quite busy and am just now getting to the update. We spend the weekend at the hospital and went home Monday with IV medication to treat the line infection. Lennon's central line will be coming out on Friday in a small clinic with anestesia procedure and hopefulle we will not encounter anymore infections.

At the same time Lennon's C.Diff flared up again more than ever and while he is on three medications to fight that, we must really encourage some yogurt. So I am hoping that by making homemade yogurt, he perhaps might like it enough to eat it!

This is all i have for the minute. I did have a question for my reader/commenters. I am turning the blog into a book, which will include more of the behind the scene's stuff that didn't always involve Lennon. It will conceptualize everything we as a family have gone through. My question to you is that I may use your comments, it may not be all of them, but the ones that got me through, the ones that helped us I would like to include them.

Thanks,
Petra

Two years ago...

2009-08-13T10:47:00.000-07:00

in the months of August...we learned that Lennon had Urea Cycle Disorder and as I think about that day ..we are in the hospital once again. Lennon has been running a low grade fever (99.0 - 100) all week, vomited twice this week and complained about his belly hurting, mainly the tube or the area of the tube. This morning I called the doc...and without hesitation he said Lennon would be admitted as he appears to be working on an infection...the issue is we don't know if the infection is around the tube or if it is a central line issue ...but the doc is clearly worried about a line infection.

So I sit here...reflecting on my last post, the last year and the year beyond that and the worries that consume me. I do not know what will happen during our stay here this time...I know they will start and antibiotic...and a good possiblity of the central line being removed. So we are sitting, waiting with patience...

Good Morning...I took a nap

2009-08-11T05:01:00.000-07:00

Lennon equates nighttime sleep with daytime nap, which can indicate some inability to differentiate timeframe. He clearly understands day from night (light and dark) but how many minutes or hours something is kind of eludes him. This is ok, because the things he says that are so Lennon make me smile and appreciate the struggles we have been through and the happines we are faced with.

The days become easier though the worries are always there. It has been at time incomprehensible to me that at one time we had to worry about what he eats because the wrong amount of protein could have taken him away in so many ways and the next all we simply worry about is infection or rejection. Again those are two things that could take him away but we are diligent in paying attention, calling the doctors and keeping everyone informed. We notify them when things don't seem right. It is what we do the worries and stress has changed (some), but I am learning to relax more and allow myself to daydream and dabble in my creativity that I call "Hippie's Creations". However, these past days I found myself reflecting on the experiences, on the emotional roller coaster, the physical wear & tear, the strain on our family and the strength that we individually and as a family unit exhuberate. It goes without saying almost that I admire each and every person in my immediate family. My other children who never indicated jealousy, who were at all times genuinely concerned not only about Lennon, but me. They not only managed to keep the house from burning down, keeping the dogs alive, but maintain and/or improve their grades and maintain the house to the best of their abilities. These children I speak of are 11, 12 and now 17. With many of parental frustrations as our live has turned (semi) normal, I am in awe of them. It is an amazing feeling to know that your children can live without you when the time comes, thoug has a parent you hope they always stay close and they may always need you in some capacity.

Yesterday, Lennon's siblings started back to school and Lennon seems quite disappointed. He loves school, he loves to play with his friends, sing songs and have circle time. I feel sad for him but I do not feel quilty for keeping him at home. There are lots of worries when immunse-suppressed children are in a less than sterile environment aka home to going to an environment that carries who knows how many germs, it is a risk not worth taking at this time. In addition to that Lennon does have a tube that sticks out about 12 inches from his belly and that lil boys and girls love to run around, climb on things and have fun...again there is so much risk I am not willing to take nor considere the possibilities. However, he will receive educational services, at home, he just doesn't have anyone else to play with. I wonder if he gets lonely, I wonder because he doesn't say he is, perhaps he doesn't know the words? He does tell me occasionally that he's bored and there is nothing to do, a prime example of copying his siblings I would think. But then Lennon has never truly learned how to play, it is something he is just now learning to do, so perhaps the morning hours when everyone else is in school and I am doing school work or creativity things, it is now time for Lennon to attempt to develop further, to attempt to "catch up" to other 6 year old little boys.

Sometimes I am challenged to recognize that he is 6 years old physically but that he is not there emotionally or maturitywise, and at this time we don't know if he will ever catch up developmentally. Working with intellectual disabled (with my current job) trust me when I say, I am okay with this. If Lennon is intellectually disabled there are still so many opportunities that allow him to live a happy, fullfilled and successful live ~ which is what a mother wants for her children, well at least I do. To experience sometimes what the PWS (people we support) experience in differentiation, discrimination and judgment hurts my heart for humanity. Lennon has many capabilities, lots of things he can do and those are the strength we focus on.

Lennon has been trying to use the bathroom more ~ on some days with more success than others. He has mastered (sometimes needs reminders) to use the bathroom when he first gets up, but during the day he is missing the interest or the internal message that says: Go to the bathroom. We will take small successful steps into potty training and even if this means he gets his smarties candy (his reward) at 6 or 7 in the morning. He fully knows that the smarties are reserved for going to the bathroom (its his favorite candy!).

This post has been a few days overdue and while parts are not related to Lennon, they are related to Lennon. There are many things I often feel, think and even analyze (the counselor in me) that I do not share, that I think I need to share. But then again, the blog is not intended to strip me naked in my emotions, it is to open the window to our lives with a special needs child and the struggles we endure. It is intended to educate, give information to other families with similar experiences so that we all may remember that we are not alone.

Happenings

2009-08-05T08:35:00.000-07:00

So Lennon was doing well and then last week, screams and tears and no sleep plaqued the Lennon. He was working on an infection around his gastro-tube area. We called the docs who stated to keep it clean and dry - Done! Then over the weekend the area became red and another phone call to the docs - bring him in on Monday!!

It was not infected (yet) but out of precaution they placed Lennon on an antibiotic and gave him an IV bowles and marked the red area for us to watch and see if it gets bigger. The worry is cellulitis and bacterial infection...ugh parasites.
Within hours he improved, his attitude and energy level went back up. Though he is still not sleeping well (sleeping disorder is back?) he is much improved. The infection hopefully stopped and under control.

On the positive note, Lennon grew 3 inches since June which the doc seems very happy about and appears to have been a worry and he gained 700 grams, weighing now 42.5 lbs.

They also took some film (x-ray) to see where the tube was located and if its still in its place..well the j-arm has coiled back and all feeds and medications are actually going into his stomach. This is good news because this means his stomach is beginning to handle what it is given! If we could just encourage him to eat the kind of food his body needs, but no such luck yet. Though he has started to eat a few things, yesterday a banana, periodically some oatmeal and rahmen noodles he is still very much hooked on candy and salties (potato chips) and his drinking is still not up to par. Hopefully time will allow him to tast the various foods that the world has to offer.

In addition to the gastro appointment, Lennon had his annual eye appointment. He did amazingly well - cooperated most of the time. The result: Lennon will need glasses at some point as his near-sightedness will get worse over time. This means once he is able to go to school, he will struggle to see the board. The doc did not want to move forward with getting classes now due to Lennon's development and the most likely probability to not wear the glasses quite yet. Hopefully in time, when the time comes he will wear them!

Today Lennon is cranky. As I mentioned he is not sleeping or at least not sleeping well. He was up till midnight and up again by 7 a.m. and it is unsure if he slept the entire 7 hours, though I doubt it! It is time to go back to Neurodevelopment and have a discussion about this as well as noted behavioral issues and development of Lennon or the lack thereof. He is however (finally) trying to use the bathroom, at least in the mornings. This is progress so there is hope that the time will come when Lennon is potty trained.

What's new with Lennon is ...

2009-07-23T10:20:00.001-07:00

...that he is slowly progressing in taking food in. The other day for the first time in 8 months and 3 days he has eaten 1/2 a packet of the instant oatmeal..this is great progress. He was recently stuck on a potato chip and pickle diet...there is something about the salt that he always had gravitated too. He also has shown interest into Rahmen noodles...so I am hopeful that one day he will eat like you and me again...as we say in these parts ... Lennon's steps!

Overall he is doing really well. He is getting around much better these days though he is still getting quite tired out. In part he is not sleeping well through the night, constant tossing and turning, which I belief to be part of his sleeping issues but also in part to him still getting used to the tube in his stomach.

I reflect every day how close we have come to losing him and how sad and heartbreaking the days were and how supportive everyone has been. Those are days I simply cannot forget but I cherish every day in which he smiles, is funny and shows his not so favorable sides. I see the delays in his development but even have found ways to embrace them. For some time I felt angry on why this little guy had to go through all of this, but if he hadn't it would be Lennon. The strength, courage and his carefree attitude towards everything are a pleasure to know. His socialization is also improving some in which he is getting used to people he used to be friends with, but is still kind of introverted with strangers. But again there is progress!

Lennon is very engaging and every one that seems to meet him is merely taking back by his wonderful personality and he grows into everyone's heart effortlessly.

He still has a few procedures a head of him (removing the central line) and eventually (not any time soon) change the peg to the button. However, while there is still risk and chances that we have to vent/air his stomach we need to take our time with this. Lennon is still dealing with acities, thrombosed veins, coagulation (sp) issues and nutritional problems. He currently his Vitamin D deficient and requires additional supplements for phosphorus and pottassium.

Ultimately, however he is doing great and I am happy to see his smiles and receive his hugs every morning when its time to get him changed, wash his bedding, set up his medication, get his breakfast ready.

Total Awesomeness

2009-07-12T17:34:00.000-07:00

Lennon was very excited about his party and it was what he spoke about until it happened. We sat up the yard with tent and decorations. We talked about kids coming over and other friends for him to visit, his daddy being there and of course presents!

Once people arrived, Lennon became a little shy - which is now the common theme, and I think it comes from a big overwhelming feeling that soooo many people have paid attention to him. Anyway, he opened his presents and was happy with his "stuff". We then decided to fill some water balloon's and his brother showed him what they were and what to do with them and the sky lit up...actually his face carried a smile - which is also a rare occasion, especially with lots of people around. The children then had a straight up water-fight and Lennon in the midst of it with care by everyone around him.

Lennon was quite tuckered out when I tucked him into bed .. but I am pleased to tell everyone that he had an AWESOME party!

Finally a Birthday Party?

2009-07-08T19:31:00.000-07:00

We are closing in on Lennon's official birthday party this Saturday. He appears to do well though seems to be coming down with a small cold and unfortunately tis the season for da sniffles. He still chooses to not be very active and we are certainly not pressuring him to do anymore than he wants to or can.

Lennon goes through a lot of food as if his mind can't make up what he really wants. He chooses some foods he liked before the transplant.. like oatmeal but is also venturing out to foods he could not have before like cereal with milk. It is very slow progress in his recovery and as we are home I acknowledge that Lennon requires a lot of care and supervision. Not that he is overly active, but he does have his tunneled central line and his gastro-tube. He seems very young at times indicating that his development suffered throughout his disease and he "requires" a lot of mom attention and is rarely satisfied with anyone else comforting him. His behavioral issues from before transplant are also still present but nothing like they used to be i.e. the extreme but he has become physical and I can't figure out if it is because he is not feeling well or whether it is that he is not getting his way. Thus leaving us with challenges every day.

Nonetheless, he is doing much better than he has in the past.

Lennon ...

2009-07-04T12:50:00.001-07:00

and his ride in the firetruck. The local Scottsville Fire Company gave Lennon a genuine Firefighter hat with his Name on it as well as a T-Shirt.

We've made it home

2009-07-02T17:32:00.001-07:00

Lennon is home and definitely feeling better. We are giving him antibiotics for the next few days through his IV line..sort of a neat concept - medicine pod no pump required. So now we learn how to keep the IV line clean to the best of our ability.

I am happy though because on Saturday Lennon gets to ride in a Firetruck in the 4th of July Parade in Scottsville. How neat is that? I hope he likes it and has an awesome time.

Ecoli ... yuck

2009-06-30T17:39:00.000-07:00

So the gram positive infection turned out to be an ecoli infection in his tunneled central line. They are currently treating it with antibiotics and hope that it will not re-occur. We will need to do some safety precautions at home...which will be challenging to say the least. If nothing re-grows in his cultures and he can get off the oxygen ..we could possibly looking at going home thursday or friday. This means he could possibly ride in the fire truck during the parade on the 4th of July in Scottsville.

Hospital visit instead of birthday party

2009-06-26T18:43:00.000-07:00

So today we brought Lennon back to the emergency room. His temp was 103 and his breathing was quite labored. They did blood cultures and within 8-10 hours have grown some bacteria indicating infection. The infection could possibly related to the his port and so we will have to see probably tomorrow to know more about it. Of course this means they will have to take his port out. We could be here for a few days...get infection under control...take the port out...go home.. that kind of thing.

So for now we have for obvious reasons post-poned the party. We will tenatively have it on July11th at our home instead of the park. So stay tuned as always as new things develop.

Petra

Happy 6th Birthday!!!!

2009-06-24T05:17:00.000-07:00

Today Lennon turned 6 and everytime I try to reflect on this...my eyes go from dry to wet. I remember when he first came home how cute he was but also how challenging he was to take care of. I remember when he started to get hs teeth and walk that all he wanted was chips and hot dogs, and I remember how many ties a day and night I would walk in or wake up to him being so sick and unresponsive. I remember telling the doctors there is something wrong but all they could tell me is that he was dehydrated. I remember the days when I could not understand a word that he said, when he should have been able to speak clearly without difficulty. I remember the day of his diagnosis like it was yesterday, the fear, the worry the unknown future. I remember the struggle to get him to take his medications and his "special" ice cream (aka formula) and all the things he could not eat.
I remember the day of the discussion of the transplant and I dream about the last 7 months, think about them and the recognition what a miracle he is. I remember and appreciate the smiles and giggles I can hear, I even appreciate the hysterics he goes through because he is in pain or because he is of his steroids. I smile when I think about him running when he still is challenged to walk without falling. I love how he demands his attention, even if it is inconvenient for everyone else. I love that he says the funniest things, that he likes food fights and that he is full of love and life.

Thank you!

Birthday Party Planning

2009-06-17T17:39:00.000-07:00

So we have a place ..on the 28th from 1-5 ... for more details call me...e-mail me... It will be held at a park... no presents/gifts required..just people to join the celebration.

Lennon settled in very quietly tonight. At 7 p.m. he was ready for bed but due to his medication schedule we made him wait till 8 p.m. He is very good...and I think he "get's" the tube thing..and clearly will indicate if he's in pain.

So here is to sweet dreams Lennon.

Almost on our way home... again

2009-06-17T08:12:00.000-07:00

Lennon is doing well. After the procedure there appeared to be a kink in the tube on the inside that they had to fix yesterday. Overnight they ran pedialyte in 10ml increments every two hours and by this morning he was back to the 'normal' rate of 80 mls/an hour. This morning they are giving him a diluted version of his peptamin jr. to see how he tolerates it. In about an hour or so we will be going home as he is doing very well.

The care he requires for the next two months is going to be incredibly big. He has the tube out of his stomach probably about 12 inches if not more out of his belly. Once it is healed up i.e. the skin around his tube, the doctors will reevaluate to see if they can shorten it for mere cosmetic purposes and that it is not dangling from his belly.

As you see I decided to post a picture of Lennon. He will be 6 years old on the 24th and it is worth celebrating..well it would be anyway...but he has had some major accomplishments. I was planning on having his party at a local park but have not found one that is not booked for the day (27th). If I can't find a park...perhaps somewhere in our town will be ok..or if all else fails ..at our home.

In the meantime we will also be celebrating my oldest's birthday...17 years old.. and just yesterday I changed his diaper so it seems. He opted not to go to King's Dominion, but rather go fishing....so we will have a fishing outing/hiking thing going on..as I don't fish.. but I love the outdoors.

Thanks for the continuing prayers, thoughts and positive energy.

Doing well

2009-06-15T15:22:00.000-07:00

So the procedure appeared to have gone well. Lennon is very unhappy about the tube in his belly and was very concerned where his other tube (the one stuck to his face and back) was. He has a hardtime understanding/believing that the tube in the belly will do the same thing, so in time I hope he can relax a little.
The next two months are going to be critical for any pulling out that may occur and we will have to be diligent to keep up with him, and the tube. In the next day or so, we will go through the process of learning about this tube as it has two openings, one that goes into the stomach and the other that goes deeper into the intestines. This will be beneficial in case their is air build up in his stomach, we can decompress, so that he may eat, while his feeds and medications will go to the intestines. This could be short-term or long-term. If this is short-term, then the docs will change the tube to something that is closer/flatter to his skin, with no dangling tube.

I am not sure what I expected or what I should have envisioned, perhaps I shouldn't have. However, this really brings down the point that he will require constant supervision and a way to secure the tube while he is not receiving feedings or fluids so that he may run and roam around.

Stay tuned for more updates in the coming days!

Surgery update

2009-06-12T10:12:00.000-07:00

Lennon will have surgery on Monday to have his g-tube placed. We will be in the hospital for about 1-3 days. Today we are going to get a C-Scan done so they can figure out whether it will be invasive (open surgery) or less invasive (scope stuff). They will also be removing the stent that was placed a couple of months ago.

Other than that, Lennon is fairing well. His food/hunger issues are quite the struggle. With a family of six there is only so much food money we can allot and still pay our other bills. However, it seems that no matter what we have, or what we allow him to choose at home or at the store is very satisfying to him. So we spend a lot of time preparing food he has chosen and then not really eating it. I am hoping that with the surgery on Monday and the ND tube away and out of his nose/throat that he can start to feel more comfortable choosing food and eating it.

It is also very frustrating that we have to continue to fight nursing care. As of Monday we will not have a nurse and it could take some time before the agency can secure services that he insurance will cover. So this is in the works now. There are days I wish I could have them spend a day or so in our shoes..go to work, run a business and go to school, and not to forget we have other children that require our care as well. Of course nothing to the extreme of Lennon, but they are still kids.

Anyway, I hope that soon everything will just kinda fall into place...somehow

Lennon is amazing

2009-06-06T04:47:00.000-07:00

He's one tough little dude and for those who follow or have read this blog know that I am telling the truth. Tomorrow it will be two weeks since he came home and things are still a little crazy. We have to visit Gastro once a week (for now), had a translant clinic visit yesterday, and OT/PT come to the house to work with Lennon and soon he will also start school...well he will receive a few hours for four weeks (extended school year) before actual school starts in August, and then he will be homebound for one year with the teacher coming to the house.

But how is Lennon doing, you ask?! Well, I think he's doing good and continues to improve (in some things). His eating is not going so well and while he nibbles on a few things, it isn't enough to say that the ND tube can come out. Instead, we have chosen and talked with the doctors about going ahead with the gastro-tube for several reasons. 1) His food issues/aversion is going to take a long time ~ say a year or better 2) we constantly worry that the ND tube will come out and we have to see fluro to have it replaced and its taped to his face on the side etc ...so its a safety thing .. but a safety thing on more than one level.. the ND or NG tube can damage his nostrils and/or esophagus while the g-tube tends to be a little safer in that regard. The docs are currently getting a plan together, because remember he does have a stent that needs to come out so we are looking at one anesthesia and 2 procedures one overnight at the hospital (cross fingers, toes and knock on wood). This will happen in about 2-3 weeks but the big thing is figuring out where to place it exactly due to his belly still being swollen, the new liver and so forth.

Yes, his belly is still extended but it doesn't seem to be bothering him. What bothers him is his leg(s) hurting. For now in the morning he watches cartoon and tries to follow people around the house. By the afternoon ~ depending on his activity level during the morning, he has become quite stiff and will complain about his legs hurting. But he continues on ~ with assistance ~ determined to walk through the house and do what he wishes. Discussion with his docs are done as he could be at risk for osteoporosis and osteo-athrities. Lennon has unfortunately never received the "required" amount of calcium and other minerals and vitamins for his bone development. Due to the last 7 month and loss of muscles etc. he may also have a bone density issue...His pediatrician had X-Rays done to see if his bones are ok i.e. no fracture because of his walking a little weird, but we won't know until next week...say Mon or Tues...

Lennon at home is beautiful, funny and witty .. Lennon in public not so much. Lennon these days is shying away from adults and other kids, even people he knew quite well and played with before the transplant. Becuase he will receive homebound schooling I am going to have to try and find ways for him to be sociable but currently in public he only responds to animals with a whisper. I try not to dwell on this so much, keeping in mind what he has been through but it does have me little worried.

Overall I am (we all) are just very happy that he's home. Now we live in a different kind of stress ~ but I think I prefer this over the alternative...wouldn't you agree?

Upcoming event

2009-05-29T08:15:00.000-07:00

This is for all the people close by and reading this blog. On June 24th, Lennon will celebrate his 6th Birthday. Imagine surviving a rare metabolic genetic disorder and the liver transplant ordeal and being able to celebrate a birthday!!! I am planng a party for one of the weekends in June with a cookout etc etc and then one at UVA so that staff that has taken care of Lennon can also participate in this wonderful celebration of his life. I am nervous about planning this event. Since we live rural I was considering a park in town somewhere but that still needs to be workded out. I hope that some of you people who are local to us can participate and join us.

Adjustments

2009-05-29T07:59:00.000-07:00

Lennon has been home since Sunday and things are still kind of nuts around here. We are working on getting all of his appointments set up, medication and tube feedings straight and boy have we been busy. The hospital and insurance company are working on getting the nursing care approved and straightened out so that we have assistance at home. It's not that Kevin and I couldn't do it, but it takes a lot to take care of Lennon at home, encouraging him to walk though he is dealing with a problematic heel right now. This might mean more X-Rays and ensuring that there is no fracture going on. He is complaining about his legs and feet hurting quite a bit so we are letting him taking it easy. We encourage him to take things by mouth and walking but this may take longer than some of us have anticipated. He clearly still has a lot of recovery to do, but his spirits are high.

Mama, I'm coming home

2009-05-24T05:54:00.000-07:00

Let me just say that Lennon is doing AWESOME, despite the c.diff!!! The last week he has been weened of the TPN and lipids and they added pedialyte to his nutrition intake to avoid dehydration. He has been tolerating his feeds which are now 80ml/hour for 14 hours to a total for 600 ml of his feeds, and 300 of water. He has not vomited in a few days, and last night took sips from his water bottle.

His personality and activity level are back though he is still physically limited to what he is able to do. He has been favoring one of his feet, more the heel than anything else that will need to be paid attention too, but overall I think this is the best he has looked in a really long time.

Initially they didn't want us to go home until Tuesday, and we played the medical opinion vs. parental opinion for a day or two. However, I feel that from the bottom of my heart that he needs to go home!!!
He will do much better at home and who knows he may surprise us even more by taking things orally such as drinking, which would be a huge step. I think that he will start eating/munching, while not right away in about a week or so, but I don't think it will be enough to meet his nutritional requirements. We will just have to wait and see.

Thanks for all the prayers, positive energy and thoughts that have come our way. There aren't enough words to show my gratitude to all of you! Please stay tuned however, as we will continue to update the blog about our ups and downs, progresses and set-backs, though we hope that the set-backs are nothing like what we have experienced since November 2008!

They say no news is good news...hmmm

2009-05-20T10:01:00.000-07:00

So what is going on these days, well...

Lennon still has C.Diff .. what a persistent bug that is, but I am increasingly feeling that the longer he is in the hospital it will be tough to fight it, as this is one of the number one places to get it. They are trying to figure out what to do, what antibiotics etc but have to be cautious because of the VRE he contracted a few months ago, they don't want to risk a full blown infection.

Lennon has to be slowly taken off the TPN and Lipids, before he will go home..so at least two more days..depending how he tolerates his feeds. In addition to his calorie intake, he will require fluids like water or pedialyte as to not become dehydrated and to avoid having him hooked up 24/7 they will have to do some number crunching and observation to see how he tolerates it all. I was hoping we'd be home this week which seemed to be the initial plan, but it just seems to be getting delayed more and more.

He is doing really well these days though because he is walking half way down the hallways. While it still only may be a couple of days that we will be here, the wait this time is ...quite annoying. I think I handled it better when he was on the breathing tube...ugh ... but he's sitting up..watching his cartoons (some disney, some nickelodeon, definitely Spongebob). I feel that some of Lennon's behavior is back to baseline in which is feeling pretty good, which gives me in indication that not all of his behavioral issues from before have gone away. However until he is medically well we will not be addressing these issues.

This is it for now...my lunch has arrived.

So what's new

2009-05-13T11:39:00.000-07:00

So these docs are figuring out his feeds, nutrition needs and what speech can do. They are working on getting him of TPN/Lipids fluid combination, but with that said, according to the doc, this won't stop Lennon from coming home. I think he really just wants to make sure that he can hold his feeds without vomiting.

Lennon is still positive with C.diff, but they are communication with infectious (?) disease to see what they can do to get rid of it. This may mean more antibiotics, and may be some other med to add good bacteria into his stomach/intestines. Yesterday he had a day of vomiting, which I think happened for two reasons a) his clonodine patch fell off and b) one of the big meds (big as in volume) was given too fast. So today, clonodine patch is still on, and they gave him the med at a much slower pace. No vomiting as of yet.

Lennon just called me on the phone to let me know:"Mom I walked". What an amazing kid he is. He has such motivation and courage to not only live, but also to overcome anything and everything. I am in awe of his spirit.
I noticed that Lennon is much more upbeat these days, and I think that some of his depression that he had fallen into may have disappeared. But also I think that the bile duct leak had a lot to do with him feeling like crap, and now he doesn't feel so bad anymore. He is laughing, playing, dancing in the bed, using his muscles by stretching and pretending to run from a bear.

More than likely in a few weeks after going home for a bit, we will be looking at going back, perhaps just as outpatients to have the stent removed and the g-tube placed (of course this depends on what he does with food at home). I will continue to update the blog whether Lennon is at home or at the hospital, because even the good parts are worth mentioning.

The doctors orders are...

2009-05-09T16:52:00.000-07:00

for Lennon to eat a handful of chips! This is literally what the orders say, perhaps not in those words, but close enough!

Lennon has moved from the PICU to the floor :o) So the questions and things that are going to be looked at are C.Diff and VRE testing to see if they still exist. For Gastro, Nutrition and Speech to get together in figuring out a plan to get him eating. Currently he is on continious feeds 25ml/hour. So they will look at the calorie intake he should receive and making sure that his intestines can handle everything ok. Speech can help in being playful with the food, encouraging him to eat.

The question is when are we going home? Will he receive a g-tube prior to going home? Or will they place the G-tube when they remove the stent that will need to come out in a few weeks? In other words what is the plan of action!

Overall however, Lennon is doing really well. He is the boy I knew 6 months ago. He is funny, laughing, playing and being goofy. He wasn't quite like that when we left Kluge. He appeared more depressed then. Now he doesn't seem so depressed. Today when one of the nurses asked him:" are you better now?", Lennon said:" not yet". But he definitely appears more upbeat. He gets tired out quite easily, and breathing is still not completely up to par, but improving. Some mobility will help with that in time. Also, the second chest tube will come out tomorrow!

Next Phase...Floor

2009-05-07T07:36:00.001-07:00

Today, Lennon has received official orders to get out of ICU and go the floor!!!!!!! One of the chest tubes will come out today, and the other will be evaluated, not a 100% on that one yet. He currently is sleeping and appears extra tired. But when he is awake he is Lennon, laughing, smiling, playing, being sassy and honory!

I am overly cautious about everything at the moment, and working towards getting things together to home school. I often just want to wrap him in a bubble of protection. I am not sure what the next steps are as there are still nutritional issues to figure out. But for now I am happy and excited that he is doing so much better. But it doesn't not exist without worrying about the future.

Sitting up and being honory

2009-05-05T09:38:00.000-07:00

So it's been less than a week since Lennon came of the breathing tube. He is now sitting up for extended period of time, poking fun at people and being honory, though only spuradically. He is still dealing with withdrawals and not quite back to normal, but he sure looks good! He is currently watching TV and wants to go walking! For someone who has been down without any mobile activity, he is amazing. Sitting up, with the belly still swollen a bit is quite a feat. The docs have deemed him unbelievable, but in a good way! He is allowed to drink, but I think food is still being held at bay, at least until he hollers he wants to eat.

Today PT will come and work with him and then the school teacher will be by later today as well. That is if he's not sleeping!

There are moments where he is laughing with heart. We played the stretch our limbs game and he had a blast, even if it was for only a few minutes. Last night, he was not able to drink anything but could do swaps with water to "rinse" his mouth. I explained to him he had to wait, his response:"Watch your mouth". So typical Lennon, but also placing the docs in their place (I think).

They are not sure what it will take for him to go home, but probably close to where he was the last time. His breathing should be without oxygen requirement, and he should be holding his food (NG nutrients i.e. pediasure) down pretty okay. Today they are taking out the arterial line, and perhaps Wednesday or Thursday they will take out the chest tube! Lennon steps!

This is what we have for day. I am thinking more frequency in most will be in order, as there are changes perhaps everyday.

He's off the breathing tube

2009-04-30T13:12:00.000-07:00

Lennon was taking off the breathing tube at 2:30 p.m. this afternoon. He still requires oxygen assistance, periodic suction of fluids and coughing. He currently is resting with the help of some sedation. He looks comfortable :o) Prior to sedation, he was fighting and attempting cry and yell ..like the Lennon we love and know! He is in a waiting period to see how he's doing, hopefully he will continue to do well and then the oxygen can be eliminated as well, as he then will completely breathe on his own.

What is happening these days?

2009-04-29T12:00:00.000-07:00

Not much I must say. Lennon continues to be on the breathing tube. He, after coming of the antibiotics, had developed a fever again, and his belly began to swell. The c.diff had waxed and waned. These days, his vent settings are lower, his belly size remains stable, his feeds have started again. However, when Lennon is on his right side (the problem lung) Lennon's heart rate and blood pressure will indicate that he is not happy in his state of sedation. They TPA'd the chest tube, and he put out almost a liter and afterward required a blood transfusion. They are now using TPA every twelve hours to bust up any clogs/clods in the chest tube so that he can continue to get rid of the fluid.

His vent settings are being lowered so that he can come of the breathing tube. If everyone is happy with the settings, doctors, respiratory therapist and mostly Lennon, then they will take him of the breathing tube. This could happen by Friday, provided all goes well, or it could be at the beginning of the week. Keeping in mind that Lennon, in his history has not made use of the "right settings the health professionals seem fit to use". Lennon does what Lennon wants, when Lennon wants it.

This is all I have for now.

We call them Lennon steps ...

2009-04-24T05:56:00.000-07:00

... and not baby steps.

I haven't posted in awhile because there really hadn't been any changes that were worth talking about. Today we have progress!

Lennon looks skinny (again) as most of the fluid has gone. He appears to be more awake as they have changed some of his sedation medications and starting on some withdrawal medications ~ beat it before it starts kind of thing. His belly was at 65.5 cm yesterday, but this morning is back to 68 cm, which is where it was three days ago. One reason for this is that he has not gone to the bathroom for some time and might need some milk of magnesia or something to help him out. He has been receiving continues feeds and up until last night did ok urinating and having stools. He did run a slight fever that went away on its own and that could also be a withdrawal symptom. his white blood cell count looks good this morning indicating there is no infection, but as a precaution they did send some cultures out last night.

I have been trying to stay busy as this waiting patiently can be quite nerve wrecking. I have hopes that Hippie's Creations can take off a little bit better as I now offer soap and candles (though pics of the candles have not made it up to the website). I also keep busy with class work and going to work. I am able to spend every other night at home with my other kids, and that has taken off some of the waiting game issues. When I decided I was going to expand on my business, part of me thought I was nuts...what more do I want to take on? However, I have learned from the first 3.5 months in the hospital that keeping busy can help you keep sane to some extent. While every part of me wants to sit with Lennon every second of the day, for my own well being and keeping strong for Lennon that is unreasonable. It is the reality of that "Life goes on". The world doesn't stop when one is sick and one does the things that need to be done. I had post-poned discussing this aspect but realize again that this is soo much part of taking care of Lennon and us coping with his illnesses, being there for him, while we continue to go on with the rest of normal life activities.

It is very difficult to be at home, (yes he is still alive and progressing to get better) and not see him getting into things, playing outside. Yesterday was quite a nice day and Lennon is the kind of kind that goes outside rain or shine. I thought about how much he means to us, me, his brothers, to everyone. How energetic he is, how busy he can keep us, how funny he is. His disorder and his disabilities have not impacted his spirit. He keeps fighting, from somewhere with in that I admire...

People, who are complete strangers to me (us) in the physical sense, have supported has and continue to do so.. it reminds me again the impact he has on so many lives.

Lennon is very much loved!

Earth day and post 100

2009-04-18T09:17:00.000-07:00

This is my 100st post about Lennon and his health. Things are unchanged for the most part, except he doesn't have an infection - is what they are saying now. His sedation is troublesome as his blood pressure wants to bottom out and his heartrate wants to do similar stuff.

Yesterday his X-ray looked worse and this morning it looks better. Reason: They placed a port in so that he can get TPA a clod-buster etc, well instead of cleaning his chest tube for flow, it didn't do anything at all, except give Lennon more fluid in areas he didn't need it. So process repeart except chest tube this time, and voila we have output and a better looking x-ray.

We don't know how long he will be on the ventilator because the fluid is still there, the belly is still big but still no real answers as to why. Did this develop because of the stent replacement? Good guess. Or the yeast infection? Again, good guess in my view.

There really isn't much else to say right now, except we sit with Lennon, watchi his monitor, missing him and hoping that we get to interact with him.

What's new?

2009-04-15T10:19:00.000-07:00

Nothing really. Lennon had a bronchial procedure, in which they flushed saline into his lungs and sucked it back out. They are culturing this fluid to see if anything will grow, but nothing as of yet.
Later that day, he had a procedure to clear out some fluid so that his right lung could hopefull expaned, ended up with a double chest tune. He continues to ooze blood and receives plasma (ffp) and regular blood to help him, thus he is still dealing with some coagulation (sp) issues. The hope is that the clearing of the fluid will help him get off the ventilator. But I think the verdict is still out on that.

Lennon is still critical and still deals with some major fluid in his body and abdomen. A lot of this is going take time and sometimes that is the hardest part in itself. And of course they still suspect an infection somewhere that is hiding, but haven't been able to pin-point the exact issue of what is going on. There are many things that are running through my mind. Was it the stent from the procedure? Is it the c.diff that doesn't want to go away? Is it the bile duct leak? Is it the liver - though the biopsy came back ok? Are his lungs or rather the right lung his problem for the issues? Is it the yeast infection, and the fact hat it was attached to his port? There are so many questions to where there seem to be no answer to. That's tough.

Small Progress

2009-04-13T15:36:00.001-07:00

With added medication such as lasix, they have been able to get Lennon to get rid of it and they have been able to lower the vent setting some. Small progress is good and the docs seem hopeful while still very much concerned.

An ultrasound showed that Lennon has several pockets of fluid that the chest tube can't rid of on its own, and so they will go in tomorrow to remove and drain as many bubbles as they can. They will also do a bronchial procedure to get a specimen of Lennon's lungs to see what it is, alas does he have a yeast infection in the lungs?! Further, they will talk to infectious disease to see what can be done about antibiotic, are there too many, not enough etc. He is still positive for the C.Diff and they are going to treat it through the NG once again.

Everyone's positive thoughts, energy and prayers are appreciated.

Some minutes are easier than others. I still try to keep busy as to not get overwhelmed and too concerned, but sometimes a song, a word, a commercial will bring to reality how sick my little boy really is, and how much I miss him. I have been able to spend a little more time with my other kids, but often that means not being with Lennon but having to have faith in the care that he receives. Trust is always an issue when it comes to your kids and someone else is taking care of them. You become very aware of the nurses and doctors and either learn to trust them or you don't and then you make decisions from there.

Unchanged

2009-04-12T10:56:00.001-07:00

Things are unchanged. He is comfortable and heavily sedated. He is a little puff-ball and they are going to help him loose the fluids. The cultures still have not grown anything to indicate what kind of infection might be going on. Talking with one of the docs today, it could be this yeast infection that caused all the trouble. Lennon does have some minimal (or huge - its in the eye of the beholder) they are not sure where it is and where it is coming from. He is very very sick. This is what we know.

Knowing that he has pulled through in the past it is difficult thinking about the alternatives. But they are real, it can go either way. I have a lot of anxiety that leaves me with chest pain, which lets me know I need to take care of myself. The support once again is overwhelming.

We realize that docs can only do so much and that the rest is up to Lennon and whatever powers there may be. It is difficult to fathom that after the long fight Lennon has endured and fought that it could just stop. I belief in his spirit and will to live but still realizing that his body may have different actions.

We fear the unknown! How true those words are today and every day in which we don't know what will happen next. Realizing that while the doctors of the PICU do everything within their power, it could not be enough. Again I pulled by the thoughts that he is a miracle and an inspiration with the will to live.

We are asking for...

2009-04-10T18:56:00.000-07:00

...prayers, positive energy and thoughts ...

At this time Lennon is on the breathing tube being supported comfortably with sedation and medications to fight "whatever" infection has consumed him. The biopsy indicated no rejection and appears to be functioning. However since he is getting TPN and some of his medications are processed by the liver, it can make it work harder. He has colonitis and inflammed bowls and an infection they don't know what it is. The docs are worried but have not given up hope ..and these are their words. While they are waiting on culture results and other lab results it is unclear the infection that has taken over. Things are done to increase his white blood cell count but there is a fine line due to the immune suppression he requires.

This is very difficult time for us as we are not sure which way it will go. We want to hang on to the positive thoughts and the faith that has brought Lennon through so many times before. Lennon is critically ill and only time can tell if he is going to pull through this one. I hope, I pray, I cry, and I worry...

What is going on?

2009-04-09T16:55:00.001-07:00

The CT Scan showed that his colon..ok his whole bowl system is inflamed...the source...c.diff more than likely. This could force/develop more fluid in areas where there don't need to be fluid. He is currently on 4 antibiotics, most everything is via IV so he doesn't have to take anything through the NG tube and his belly can rest. They are checking the kidney function and the pancreas functions as well.
The results from the biopsy are not in as of yet...so probably tomorrow. Oh he also has nodules (sp?) on his lungs that could be either lymphnodes or from the yeast infection where little yeast balls have attached themselves.
So he has several things going on, some are more clear than others now comes the time for the docs to figure out which ailment they will treat first and will it simultaneously (sp) take care of the rest. For now he is on the breathing tube. They attempted to take him off, but he is too sick right now and this is probably how they keep him comfortable.
It's been a long day of crying and emotions, praying and hoping. And though I have faith in the docs and faith in Lennon it doesn't make things any easier eery time he goes through them.

Hoping for Answers

2009-04-08T20:07:00.000-07:00

So yesterday Lennon received another chest tube because he has fluid everywhere (again). Today they did a biopsy - though they are not suspecting a rejection issue - they are hoping/thinking that they can find some answers to Lennon's situation. They also did a CT Scan as an ultrasound (again) would have not been beneficial and the scan may (or may not) give them some answers. For the Scan and the biopsy Lennon was put back on the breathing tube - and we were told they wouldn't take it until tomorrow. Do they not remembe the last time, or the time before that? It worries me beyond belief. It worries me that they are worried and they don't know or understand of what is going on. So here is to hoping for answers...

...part of me is scared to know what is going on, but of me feels like where we were several years ago when we didn't have a diagnosis...it brings back certain memories I do not wish to think about. It makes me angry to think that he has to go through so much just to be alive. Oh the things we take for granted. I realized that I in some instances am numb. Four months ago a chest tube was a big (I mean BIG) deal for me, yesterday was like ..oh ok.. moving on now. But I lost it later on that day. Crying is a healing emotion, anger is a motivational emotion (from a wise woman). I went home and made soap before going back to the hospital because for just one minute I needed to focus on something else. For one minute I didn't want to think about all the possibilities. For one minute I didn't want to think at all, let alone feel any emotions. I have said it before and will say it again, I don't ache for myself but I certainly hurt for him. I miss Lennon, I miss him a lot and the transplant has changed him. But I feel his pain, I can see it in his face, the uncomfortness of whatever it is that is going on. Even when the ammonia spiked - I never has seen this in him. There are all these emotions - sometimes easy to understand and sometimes complicated to explain. He is however my inspiration to keep going...

The nurses often tell me how much that little boy loves me.. he says my name in his sleep..he says my name when his mental state is altered (when high with ammonia in system or due to medications). He says my name to let me know he really needs me - to hold him - to stroke his head - to tell him I love him. He says my name to make sure I didn't leave him - that I am forever present to help him have his needs met - whatever they may be.
Of course this too leaves me in agony - I have other children while older and perhaps less needy - still need me. Often feeling that I am abandoning them as my time is spend at the hospital or work, rarely at home. I often feel that I need to find that pot'o'gold that allows me to divide my time between them all (i.e. not work). But it isn't an option. My kids understand this - my kids are great. They keep the house running - do their homework - feed the animals and don't set the house on fire or anything else. They are mini-adults. They too are my strength and inspiration. They often do not get talked about - but they too have some much insight and so much to share - and so much understanding beyond their years.

This post has gone on longer than I intended but that happens. All I can say right now is that I am overwhelmed with mounds of emotions that I haven't quite figured out how or where to place. I feel more drained this days than I have in a while, so I will end this with saying good night and thanks for all your prayers and thoughts as Lennon continues his battle of recovery.

Sit down with the doc

2009-04-07T09:59:00.000-07:00

So I just finished with a sit down..the docs are worried aboutthe fluid collection that is going on in Lennon's system. The liver is functioning okay but not too optimum,but they aren't sure how much of his problems are related to the liver function. They are keeping him in ICU because they are worried about the fact that he is brewing some other kind of infection as his x-rays where whited out today more than yesterday or the day before. He will be receiving another chest tube to help drain the fluid.

His brething is labored but his oxygen requirement has not changed. If the docs tell you they are worried, well that just adds to the worries I already have. I hope that too this will pass and we can head towards recovery, because the alternative is not acceptable, right? They are holding off on adding more antibiotics for a few days and see what the ultrasound indicates. Of course with the bile duct problems he's had and has perhaps that is the evil of his problems. Further, another transplant is at this point not an option or considered, but then it doesn't mean that it wouldn't be in the future. It was mentioned to me, so I figure I will mention it here.

I think that the liver contributes to all his problems, and while he is not "obviously" rejecting it, it is functioning but I think it is functioning at the bare minimum so to speak. I am not sure where my mind is at the moment, I think overwhelmed is an understatement. Oh yea and tired.

2009-04-07T06:14:00.000-07:00

So the reason for his bleeds are varices along the esaphagous varices ...more information here: http://en.wikipedia.org/wiki/Esophageal_varices or here http://www.webmd.com/digestive-disorders/bleeding-varices. His are due to vomiting and irritation along the esaphagous and stomach.

Today he's better. He is sleeping for the minute but even in his sleep he will call or me. Last night it went something like this: mommy mommy ooh ooh hehehe mommy mommy ooh ooh ..I am not quite sure what this is about, and I do hope this will pass. This morning they are ordering an ultrasound because his belly is big again, if no information comes forward from that, then he might get a CAT Scan to help figure out what is causing his belly to be so big.

So this is all I have for today.

Bleeding stopped

2009-04-05T05:54:00.000-07:00

The bleeding appears to have stopped. So the medication is working. He will be on this med for one more day and a half. Until then no food or drink except for his medications. The fear is that the clod that has developed over the bleed may start up again. Of course we will always have to watch for that now.

Lennon is grumpy as to be expected, he's thirsty, hungry and tired. I'm breathing a lil easier this morning. Yesterday was bad, scary and a day I never want to experience again.

I dont have much else to say this morning. Except that he continues the fight, and he does not bow down.

Unreal

2009-04-04T03:37:00.000-07:00

So Lennon came out of the PICU yesterday, but within hours he was vomiting. Later on that evening he was vomiting blood. The doc came by...given Lennon some FFP as his coagulation (sp) is low, and he is a risk for bleeding. All the docs are aware..several reasons for bleeding:

his coagulation is not what it should be
he is taking asprin
other/new infections no one is aware of

This morning there was blood in the diaper, and there is evidence of blood in his NG. We are heading back to the PICU, and hope to find where this bleeding is located. There is one medication they can give to stop the bleeding but will have to watch him closely, hence the PICU. The other thing they might do is sedate him, send a scope down his throat to locate the bleed. If all else fails, he may have to go into surgery and at this point in time that is the last thing he wants or needs due to the bleeding risk he is.

I am a little frustrated (little being an understatement). How much more does Lennon need to go through? Isn't this about enough? Everybody is wondering how I am holding up, and amazed by all the things I continue to maintain (work, school, home and Lennon). Well it isn't about me, I didn't sign a choice contract at his birth giving me the option. I don't remember asking for this, not once. Lennon is an amazing little guy and I wish that everyone could spend time with him to meet him. He can be funny, honory, silly and lovable. Lennon doesn't have many emotions but the few that he has, man they are HUGE.

Recent Developments

2009-04-02T16:15:00.000-07:00

So, Lennon is doing better but still has a bit recovery to do. The removal of the old port went well and was very much necessary as the yeast literally stuck to all the parts of it. He now has a different type of port that is external and tunnled into his vein or where ever it went. The chest tube that went in, came out today :o) so that's a plus. They started feeds via NG tube yesterday and he has been tolerating this quite well. In addition, they added a new medication that is supposed to bind his stomach contents a bit and slow down the massive diarreah that Lennon suffered from.

Other developments are that the G-tube is becoming more likely. While hesitant and fighting it it is becoming a necessity. The NG tube could be more damaging to Lennon in his nose, throat and even the stomach and the G-tube is much safer in that regards. It doesn't make me worry less about his infection risk but we don't want to add injury when not necessary. Until his feeding issue is under control he will require additional assistance via feeds. It could very well be years before he recovers from the feeding dilemma. While he is a master at eating chips, he no longer is interested in french fries or anything else. In part I think because he is in the hospital because at home he was beginning to eat different foods, but still not enough to be considered nutritious for what he needs. The G tube surgery will not happen within the next week, but possibly within 2-4 weeks. This can be done as an outpatient thing, if he happens to go home before then :o)

In the process of it all, yeast infection and fluid collection, Lennon has developed airspace lung disease, and the best I can tell you is that it labors his breathing. It is not pneumonia but acts similar when it comes to the breathing aspect of things. The air space lung disease should get better/go away once the yeast is completely gone. He is requiring less oxygen 1 liter as opposed to 2 liters. He is still in ICU, and until the PICU docs feel he can go to the floor he remains here, unless space for the PICU becomes an issue.

In the mean time we are hanging in there, making the best of things. Going to work, going to school and ensuring our other kids are taken care of. It is not always an easy task to do but I suppose we are up for the challenge once again.

A title eludes me today

2009-03-30T06:55:00.000-07:00

So Lennon is in the PICU - his heart rate is going down slowly - 157. However his breathing is still labored and hi requires the nasal canular for oxygen. Now there isn't any fluid or amount of fluid on the lungs that would cause him to breathe like this. However there is fluid collection on the left side, that they will tap into today with a pictail - similar to a drainage tube to get the fluid off.

This morning some levels are really low - others are really high - they are going to talk to hemoc (blood) about how to fix his issues as he is at a high risk for bleeding right now. His white cell count is also extremely low which means he isnt able to fight infections as well - and his glucose is high and some other ones that I have a difficult time remembering.

He is very feisty - in fighting spirits - telling the nurses to leave him alone. He is not interest in anything but potato chips (thank god for IV Nutrition). I did ask since he is keeping things down now (so appears) if we can start the feeds again, thinking that might help in some way. I don't know how long he will stay in the PICU.

As this is an earlier post, I am editing it. Lennon will have his port replaced today. The yeast infection he has been dealing with appears to be localized to the port as opposed to the blood stream. While this is a "good" thing, I a bit fired up this morning. They tested blood from various locations and this is how they know its not in the blood. I talked to his doc, who didn't mention a procedure today. So a surgeon came in, which caught be a bit by surprise because no one told me of the plan of action. Surgeon took the blame by saying she should have talked to the PICU folks to see if they had a chance to talk to me. It is Monday morning and they are doing rounds and plan of actions for the week. I don't care. Someone should have come talk to me before the surgeon walks in with consent forms eh?

Anywho, this is what it is.

Infection!

2009-03-28T07:11:00.000-07:00

So the cultures from yesterday indicated that Lennon has a fungal (yeast) infection. He is been running a fever (highest was 102) and listless. He has been keeping his meds down, but still burps a lot. Because of the infection his heartrate is 190 and so we are going to the PICU until he is stable. This could mean we will be there a few hours, a day or more. But because Lennon is still/already so fragile he needs to be watched a little closer to make sure his heart is ok and nothing else is going wrong.

This infection came up really fast because he was feeling pretty good the other day except for his belly ache. But no sooner did he come out of the procedure he wasn't doing so hot, and than bam fever that wouldn't go away, and his breathing which has everyone worried but there is not fluid collection on the lungs or anything. It is all because of this fungal infection.