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

The end of 2009 and Beginning of 2010


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


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


..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


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


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


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


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


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


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...


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


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...


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


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


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 ...


...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


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?


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 ...


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


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


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


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!!!!


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


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



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


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


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


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


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


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


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


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


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...


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!

The doctors orders are...


to eat a handful of chips anytime Lennon wants to! Literally, this is what it says on his daily instructions :o)

Next Phase...Floor


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


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


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?


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 ...


... 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


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?


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


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


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...


...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?


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


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


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.

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


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


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


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


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!


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.

From Transplant to Gastro


So the procedure went well yesterday. His stomach has reduced in size and the stent they placed will stay in for awhile and that should remove some of the problems. Since the liver is working, transplant thought it be better for GI to get involved.

He is not able to keep anything down at this point, and they are giving him nutrition via IV ..TPN and lipids. Today they are going to do more blood cultures, urine samples etc in part of see if anything is going on with his blood, other infections and if he is loosing his electrolytes through the urine. Hematology is also going to get involved to figure out his blood issues such as his lack of clodding etc.

So we will play the waiting game once again and hope there is a resolution. Alas this is all I have for now.

Doin' ok!


So after a late start (scheduled at 11 a.m. going in at 2 p.m.) Lennon is doing well. The stent that was in from the transplant surgery was in the wrong spot i.e. too low in order to cover the stitches that connected the bile duct. Hence there was leakage going on that made Lennon so sick! They placed a new stent into the spot where it was supposed to go and removed the old one. This means that at some point they will have to go in and remove this stent but I imagine it won't be for another 3-4 months give or take. Hopefully in the mean time everything else will work itself out and we won't have to deal with soo many infections anymore.
One of the after affects of the procedure is that the Doc had to place air into Lennon and he had a major burp down in the PACU and I supposed this will happen over the next day or so for the air to release itself. I really do hope that his intestine issue and bile duct issue are resolved and that we now know the culprit of this situation.

The other thing they did is replaced his NG tube, which is great except it was too short and they placed the tackaderm (sp) right onto his skin. Lennon has a major adhesive allergic reaction that will show up as sores just starting to bleed, the skin to blister or even resemble 2nd to 3rd degree burns. By the time he came back to his room, his face already showed indication for the reaction. So his NG was changed again, this time to the right size and then duraderm was placed under the adhesive of the tape.

He has now settled down and calmed down for the moment and is watching spongebob. Actually he looks like he is going to sleep :o) which he very much needs, though about 15 mintues ago he was very insistend that he'd go home!

It all boils down to...


the stent removal tomorrow. All the top dogs (transplant and gastro) are thinking that Lennons problems are because of the stent that didn't fall out when it should have. Thus given him issues in the colon area. They have been treating him with a med, that should eliminate nausea, speed up the process of digesting, and take care of the reflux he is dealing with right now. The docs think that after the stent removal all his current issues will go away. The poor kid has the major case of diarreah.

Since the study yesterday his belly has swollen and gotten bigger. Again the contrast has upset his insides and again they tell me that after tomorrow it should go away. There are common risk of procedures but in addition there is the risk of his intestines getting cut and they have to actually cut him open to fix it. He will have the breathing tube in for the procedure but should come out as soon as they finished.

The plan is to remove the stent via scope and then clean out whatever junk may have accumulated. This will happen after 10 or 11 a.m.

I am nervous about tomorrow about as nervous when he got the transplants. But I am going to think positive and that everything will work as it should!!!!

Why is it that...


...nurses think that parents are not present in the room or even in the care of the child. When one thing grinds on me is that when people step on parental toes. Example, Lennon receives a breakfast tray and needs to be encouraged to eat the food. While we do not stop him from eating chips, we do set the rules of when and how many throughout he day. If it means saying, "you will get your chips after you eat the yogurt (or whatever)". No instead, some nurses think that if the child asks for a bag of chips 8 o'clock in the morning, its ok for the child to have that.
The other thing is that when the child has meds do, when you are called away, come back to finish the rest of the medications. Don't let the parent come after you to do your job, lord it isn't that complicated, or let the parent do it in the first place. It really burns me up when something is started, and then not finished. It isn't like a piece of art where you can do that with.

I have friends that are nurses and I generally like nurses if they are given thought to the parents and some considerations.

Results..what results?


Alright, so they put a lot of contrast down the NG tube, and Fluro told me there is no obstruction (later confirmed by the diapers we had to change, I think my last count is 15?) but he does have reflux. Ok. In the mean time, he is still getting ill. His belly is extended a bit and in some areas appears swollen and oddly shaped. Since I had not seen any docs since 8 a.m this morning (and I am used to them making two rounds a day), I had them paged. The doc (whom I had never had contact with came over) and checked him out. Well, according to him, his stomach is a bit irritated from the contrast hence the extension and swelling of his stomach. OK!

His belly hasn't looked like this in a few weeks and I am a little concerned. Is really all of this because of the stent that is still in there?

Also the nurse today (awesomely good job) printed his results from labs today and I made a discovery. His ammonia was 82 on Sunday and 61 today. Hmm got me thinking that if he now has a healthy liver and he is "cured" from the UCD that would mean that if his ammonia levels go over 31 then he would get sick?! Sorta makes sense to me, but again no one here to answer that questions until in the morning. Sure I can have them paged, but I will just have a doc who is on call and really doesn't know anything anyway. Marvelous thing this teaching hospital, what the heck are they teaching them?

In the mean time Lennon has about 2-3 diapers in an hour. They started him on a new medication to move things faster through his system, and this should help with the nausea and the reflux. Well we'll see how that works out. Though I noted that his burps have gotten a bit less since the medication was started. Now I just wish his diarreah would get under control a bit cause this poor kid is already sore as heck.

He is soo ready to go home. He keeps telling me that and the nurses and the doctors. But he has to wait and gees patience is not his strong point, well what five year old has patience?

Yesterday I had to place a student nurse in her place. Here is Lennon with a food aversion/feeding disorder, and she tells him that if we eat too much we get sick. Sure makes sense, but he doesn't understand that, now does he? He might hear that if he eats he will get sick, throwing out the work we had done to get him to eat. Though this didn't happen, but man people really need to pay attention to the chart and talk to the parents, and be aware of who they are dealing with and what issues are at hand. Then again I don't think you really should tell any child that eating too much can make them sick, this will stick with them for a long time. I know it only happened once but still Lennon is a child with food issues.

However, in retrospect he is still munching away. Today he had a bag of pretzels, some yogurt, 2 cherry tomatoes, ranch dressing, some french fries and half of the small pringles size type. And again I almost got in a battle with the nutritionist. She told me not to offer him the junk food and he would start eating the food on the tray. WHAT? No he won't he will not eat if I keep away the chips and pretzels. I have to offer him everything and allow him to eat what he chooses. He has an NG tube and gets his nutrition through the NG tube when his belly can handle it. Speech pathology (love em) backed me on this, so yay for me and what I know about Lennon. Sometimes I wonder about people and their jobs. I get that she is just making sure that Lennon gets the stuff he needs, but since we are dealing with a food issue here, nutrition is not always in the forefront. While I can and have to offer all the foods to him, he needs to make this choice. And as noted above he does make some decent choices eh? Yogurt and tomatoes, I'll take that!

The other thing today is ..boy I wish people would read medical records! Nutrition said to try and get him to drink KidsEssentials 1.5cal..umm this is the stuff we feed him at home through his feeding tube. Lennon doesn't like milk or milky kind of drinks! Right now they are giving him pediasure (when is belly can tolerate it). Anyway, I had informed her (nicely) that he gets this stuff at home through his NG, but that he won't take it orally. Heck we bought Ensure Chocolate flavor and he will drink half a medicine cupful but he doesn't like it. The past two years he was on a special formula, he is not going to take anything willingly that tastes or reminds him of that.

On a lighter side, Lennon's hair is sloooowly growing in. He is getting fuzz again and it is notably darker than it was before.

Well I think this is all I have for the day. And here is to some answers tomorrow and perhaps a better day for Lennon (keeping things down and diarreah going away).

Communication...too much to ask?


So stent removal now happens on thursday! It appears that when the transplant surgery occured a plastic stent is placed in an area to stop leaks while everything heals. In most cases they fall out on their own, they are supposed to do that, well not for Lennon. Lennon's stent is still in place! Thus they have to go in and take it out, which can cause some of his issues.

However what I was not told is that they are doing a study of his stomach and intestines. WTF? It is a matter of drinking dye and taking pictures of the inside. I am ok with this happening, not a huge thing or a dramatic deal but c'mon shouldn't someone talk to me? This isn't the first time something like this happened and ya would ya thought they learned with what I had to say last time, but now they had to let the on-call docs handle it who don't have a clue. Gees.

Is a little communication really too much to ask?

I think not!

Well anyway so I don't know how he will keep this dye down but hopefully they can figure out why he is constantly burping and spitting up or vomiting. So yea for study, nay for no communication!

Until tomorrow world!

Stent Removal Procedure


Stent removal procedure is scheduled maybe sometimes tomorrow, at least this is the thought and the game plan for the moment. When Lennon had the transplant there was a stent placed in where the bile duct was connected and generally they tend to fall out on their own, but in Lennon's case this didn't happen. When this doesn't happen, there gets some junk and gunk build up around it, behind it and everywhere and can cause some problems. The hope is that when it comes out he will feel better and we can be attempting to go home this weekend. If this doesn't do the trick, they will have to do something else, but not quite sure what this something else might be.

Right now his belly is really hurting him but it is unclear why he is hurting. It could be that he feels sick or that there is some cramping going on. While the docs think he looks good, I on the other hand do not think he looks that hot. Then again, he could now be depressed of being here (again) and his affect and mood are a good indication. Or I could be off on this completely.

No real answers on the Weekends


So what is new at this time? Nothing much. Lennon tested positive for c.diff, again. This could be one of the reasons he has not been feeling well and the inability to keep things down. You can read more about it here: http://en.wikipedia.org/wiki/Clostridium_difficile (though it may not be the best source).



They added antibiotics for the c.diff but also to cover other possible infections that have not become clear yet. He did have labs drawn and blood cultured on thursday and those results should come in Monday or Tuesday. Since then the feeds have been started again and 5ml/hour. Not much but at this time my main concern was that he was so miserable from hunger anything will work. He has been eating or rather munching would be the appropriate word. Pretzels, chips and a few french fries. He also nibbled (mouse bites) on a hamburger this evening.



For the first time in a long time, he actually stated he wanted to go home. This (for me) is good. This means that perhaps he is getting tired of being in the hospital. His chronic sickness is not gone but its a step into the right direction. We have to realize that he has been very good at being sick and never been well at being healthy so this is new to him, because despite all the infections this is probably the best he has ever felt. Imagine no toxins that drive you insane in your system? It's like waking up sober one day and realizing how good it feels to not be intoxicated.



One of my commenters (hugs to ya for the thoughtful feedbacks and friendship) mentioned that Lennon has the potential to deal with Fructose Malabsorption (FM). My thoughts on this are as followed: He didn't vomit when he ate, but he would vomit if he drank to fast or too much. He drinks water 9 times out of 10, so how don't know how realistic it would be to consider the Fructose Malabsorption (FM). At the same time, Lennon does not drink (nor has he ever drank) juice. Sevearl reasons for this would be that he doesn't like it, and that it would mess with his system. In other words he got constant acid-ridden diarreah. So there could be something to that idea.

In other news from early this morning, the docs want to take the stint out of the hepatic vein they had placed a few weeks ago when they ballooned it for the second time. However, his ultrasound (that was finally done around 1ish) indicated no change. Since angio is responsible for the procedure nothing would happen until Monday, and then we are not clear on if it is even going to happen. The thought was that perhaps there is some gunk build up around the stint. Makes sense in some ways. I think of it as we eat too many fatty foods and all that stuff that sticks to our arteries and veins and can lead to blockages. But again, I don't know for sure that this is going to happen and probably won't know until in the morning when they are doing rounds. For this minute however has has quit vomiting, been eating a popsicle and drank some sweet tea.

He has been sleeping a lot today and again is currently asleep. So here is to a good nights rest and some answers tomorrow.