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

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.