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

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?