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

Could today be the day??????????


We hope! Lennon is doing better. His liver function is slowly becoming more normal. His kindeys look good and his lungs are way better. Currently they are weaning him of the breathing machine so that he is required to breathe on his own. So if he does well today could be the day that the breathing tube is removed, if not we will try again tomorrow. He still has a long recovery ahead but everyone (from the professional perspective) is pretty positive and confident that things are definitely and finally heading into the right direction.

Some of you who follow this blog, sorry for not calling etc. but I know everyone understands that funds are tight, time is stressful. I do appreciate everyone's positive thoughts and energy in my son's recovery.

Mom's don't like setbacks!!!! And we need breaks!


Monday afternoon they took out the breathing tube...but it appears that Lennon was not ready. He struggled most of the night, his Oxygen being in anywhere from 67-91 and the CO2 getting higher and higher. While I consider myself a strong individual on many levels, I should never watch them take the tube out, because I watched my son not breathe, and that is the worse feeling ever. Tuesday morning they put him back on the breathing tube, because he struggled too much.
One of his lungs had partially collapsed and there was some fluid that was interefering with the normal breathing process. His lung is reinflated (breathe) but ultimately Lennon was not ready.

He will do things on his terms, the way he wants to when he is ready. This is Lennon!!!

So yesterday I went home and hung out with my other kids (more or less). I think the important part was I was there for them and available if they needed me. Plus I needd to rest. I was close to if not exhaustion that could have hospitalized me, but then I wouldn't be any good to Lennon. When he wakes from his sedation, I need to be able to support him and be there for him.

The support by our community has ben overwhelming but we certainly appreciate everything and anything that comes our way. The thought to make things easier for us is so unreal because in the last year or so, we did everything and anything ourselves. We certainly realize that now is where we need the help, but we are folks who have a hard time asking. Call it a pride thing, call it what you will. Nonetheless, we are gracious and thankful.

If you want to help go to hippiescreations.etsy.com ...this is one of my stores online where I sell my artwork. Thanks!

Stay tuned....

Things are looking up


So the second surgery was on friday and it went well. There was some swelling in his abdomen so they left it open but covered and kept him sedated. This morning they closed the area and said that everything looks good thus far. His liver enzymes are coming down which is a good thing and means that his liver is slowly but surely adjusting and working in him.
There are some concerns about his kidney because his urination decreased and while the transplant surgeons are okay with that, some numbers are coming back elevated that shouldn't be. However, Lennon being Lennon he decided to do business in the OR so I am feeling pretty good about things.
They will stop sedation at 1:00 p.m. today and then take out the breathing tube and some other tubes once he is awake.

Lennon is a pretty lucky guy and more so he is meant to be here. He has survived the odds numerous times and he continues to defy them every step of the way. I am lucky and honored to not only be his mom but to know him, and I belief that he will do something great but also important with his life. I am just amazed that he has received not one but two livers in one week.

Thanks to everyone that has send us their prayers and thoughts; that has helped me and my family financially, emotionally and in every other step of the way.

Here is to hope


Lennon went into surgery at 1:00 p.m. today. He was not feeling well this morning, certainly in a lot of pain from the first surgery. He looked exhausted when I came back to his room this morning. Let's hope and pray and give positive thoughts that this surgery will go great, that everything will be functioning like it is supposed to and that he can soon be as healthy as he should be.

Here it goes...


The phone call came and another liver is on its way. The surgery is schedule for after 11. Wait for the update.

An update without an update


Lennon is doing well but we are still waiting on the new liver. So for now we wait....

Alright here is the deal...


...while I have a moment...

So he had his surgery last night, everything went well, until they took the ultrasound and found that one of the arteries is clogged. They rushed him back into surgery to fix it. The docs placed him on heparin IV in hopes that this would help the situation. This morning, they took another ultrasound, and while half of it appeared fine, the other half didn't. So they did a CT Scan to get a better picture. And it is clogged.

So his body is accepting the liver fine, but it is that artery that could cause problems later down the road...abcess, infection, other parts dying off etc. So now he is back on the transplant list but has an extreme high priorty (No. 1 so-to-speak). And so we wait...again...

This afternoon, they took away the sedation and he slowly woke up. They took out the breathing tube and some other things. First thing out of his mouth "I'm thirsty". He doesn't want to hear he can't have anything for awhile. So anway, he looks really good though. His eyes aren't dialating when he is stressing, his skin looks good...physically he almost appears like a child I didn't know before. Of course he isn't all that pretty err..handsome..eyes are kind a puffy...but heck he was sedated for more than 24 hours.

Really the frustrating part is waiting...and bless the family of the first donor...and unfortunately the next one to come. This is something I cannot describe how this feels. Knowing someone elses baby has died, but has given life to my son. It is unreal...that huge heart that family has to make such a difficult decision. I want to thank them from the bottom of my heart.

The outreach to my family has been amazing...we have prayer chains all over the world..WOW! Thank you! Thank you for having the faith and the trust that he will be ok. Thank you for the emotional support to us s, who are taking this a lot harder than he is (probably).

Thank you!
(green is Lennon's favorite color).

I will update more as I know more....the big thing is to keep Lennon healthy and waiting....

Lennon had his surgery


Lennon had his initial surgery. Things are a bit shakery. May need more surgery. Please pray for him and hold for the next update. I will go into this some more at a later date.

Lennon had his surgery


Lennon had his initial surgery. Things are a bit shakery. May need more surgery. Please pray for him and hold for the next update. I will go into this some more at a later date.

Lennon had his surgery


Lennon had his initial transplant surgery. Things are shakey. Please hold for further update.

No school on Saturdays


So we have been home for a few days and well so far so good I suppose. He seemed a little off the other day, but then yesterday seemed to do really well. We had a good time goofing around, which is not something we do very often. My work hours aren't the best (3-11) so I miss a lot of what is going on after school. I was off yesterday and the day before :o)
L's shakes have done away for the most part, every now and again we can still see some shaking going on, but lord nothing what had been. Unfortunately his behavior is back, the behavior that we have such a hard time controlling, and trust me I'm a believer in firm discipline, but L doesn't get it half the time. It's rather quite frustration because some behaviors are so typical for his age and I am happy to see them, but he is really extreme in everything, there is no inbetween with anything. He appears to me more cranky than ususal and aggressive to the point my poor animals hide when he gets around. Well hiding is probably not the right word, but they aren't in his path. This is the frustrating part of his brain damage that a lot of folks don't understand. His outbursts are unreasonable but then he is 5 and at 5 everything tends to be unreasonable (keeping in mind his delays his behavior is quite typical for the terrible threes).
He wants what he wants, when he wants it, NOW. He wants to play video games, he wants candy, he wants mommy to hold him, he wants to color, he wants to go outside, he wants chips, he wants dinner, he wants to watch cartoons, he wants to play with cars, he wants to go to school..he wants to do all of these things in 10 minutes or less.

Today is Saturday and he wants to go to school. It is hard for him to understand that Saturday and Sunday's there isn't any school.
L: no school because I have a headache?
Me: Uhh no, you don't have school because its the weekend. There is not school this weekend.
L: You need to call the doctors because I have a headache
Me: But I think you are fine and we don't need to call the doctor
L: no my head hurts, I need an IV in my IV Port

These are typical daily conversations with Lennon. He complains about his head or his eye and I do believe that he hurts, but I can't convince him that we don't always need to go to the doctors.

All in all today seems to be ok for now. I am sure by the time I return from work, I will hear everyone's frustration about L not listening to nothing anyone says. But this is life, this is his life, this is my life, this is our life.

30 days...its like an infomercial


I talked to the transplant co-ordinator! Catching up and following up on L's health, hospital stay etc. In conversation she stated that once the thirty days are up (November 29 will be 30 days) it will ultimately happen shortly thereafter. Hmm, makes you wonder. While it could certainly happen now - it does seem more likely it won't happen until the end of Nov - beginning of Dec. Well me might be able to spend the holidays at home. Which would be nice, but I couldn't think of a greater gift then for L to be relatively healthy and live a relatively normal life. I say relative because the reality is he has suffered brain damage and he is behind. He does function well and some processes that weren't well before are certainly improving.

And in case you are wondering, L is home as of late Saturday night. We played catch-up on sleeping yesterday, I did some well needing to do homework for class and L was himself - playing in his halloween costume. And the only medication he is on is for the UCD, at this point no behavior modication or ADHD control - oh boy it will be an exciting of couple a weeks (bad english here eh?).

Here is to good health!

Don't use Abilify if your child has a UCD!!!!!!



So L has been on the abilify to help with some of his behavioral issues (due to brain damage etc.) well, it works like a charm. It works too well, because it will cover the typical symptoms we know about L to have when he is in a hyperammonia state. Thursday L, was not sleeping well but settled in nicely once I was home from work. He went to school but two hours later he was back home. We noted again that he is still shaking tremendously and so I placed a call to Neuro-Development. Well in the mean time, something ..call it mommy-instinct if you will ... I thought well maybe we oughta have his ammonia checked, just to be safe. We went into the lab (not the ER) and took blood, waiting for about two hours - and his levels were 269!!!!!! This was at 12 p.m., at 6 p.m. his level was 290 and at 6 a.m. his levels were 280.

So yes I belief that the Abilify - no matter how well it made him behave - has covered the typical symptoms of: lack of intake, lethargy (sp), aggression, mental alertness, so I did note his drooling once again. Good indication his brain is shutting down.

These shakes he is having make me nervous. I almost hope that it comes from the ablilify and that now that he is no longer taking it, those will go away. I hope this is not something else or something new. Perhaps it is a symptom? I just keep thinking about how long has his ammonia been high and we didn't know this time.

Well, we are heading to the PICU in a bit to get the amminol IV hooked up as his levels are not coming down with just Lipids and D10.

Have a nice day!

The transplant list


We received the phone call, Lennon is on top of the transplant list. So now we have to be patient with anticipation, keeping him healthy and be grateful. I am batteling to determine which is worse, the waiting or the surgery and I came to conclusion that the waiting is worse at the moment, but the surgery is scarier than the waiting.
My gradidute goes out to the donor that is helping to save my son's life. Medical technology is amazing, but there is nothing more amazing than a person being an organ donor so that another person may live. I am an organ donor, always have been and I hope that many who read this blog, who may not be organ donors - please do consider it. I know sometimes religion, beliefs, life get in the way - but what an amazing gift to give - LIFE.

As I sit here - writing my thoughts to the world - I recognize I have given life and it is quite miracelous. Thus a donor would merely give the gift of continuing life.

As I think about what life may be after the surgery - I can't imagine it. The hope is that the UCD is cured per say and that Lennon will lead a normal and healthy life. The question is will he recover from some of the brain damage he has suffered, will he catch up in his development - will some of the behaviors go away? I know, there is no telling until everything is said and done, but one can't help but wonder about it. It's a human thing to do eh?