A boy named Lennon

welcome

Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder - CPS Deficiency. He was diagnosed at the age of 4. In November 2008 he underwent not one but two liver transplants in order to save his life and could potentially face another transplant. This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon

Moving the Blog


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....


...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


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


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


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


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


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...


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


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


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


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


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


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


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


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


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


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

Happy 7th Birthday Lennon!


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


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


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?


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


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


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


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?


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


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


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


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


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


 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


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


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


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


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


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


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


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


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


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?


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


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


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


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


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


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


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


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


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