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

Happy 7th Birthday Lennon!


7 years ago a little boy sneezed himself into this world. I firmly belief that with each child we learn something new about love and life and ourselves. My oldest has taught me the kind of mom I want to be (he just turned 18 on Sunday). My almost 16 year old, has taught me that as moms we do make decisions what is best for them. My 12 year old taught me to laugh and Lennon..has taught me how precious life on this planet really is. All of my children have taught me the strength I truly poses.

This year we have decided to not throw a huge party. This year the oldest needed to shine with having graduated high-school, earning his drivers license and turning 18 all in a months span. For Lennon we are keeping it simply this year... its cake and a movie. He loves Toy Story so I am hoping he will be delighted by watching Toy Story 3 at the theater.

It's challenging sometimes to not forget how precious my other kids are because they don't have the same struggles like Lennon. And yet the reality is they too could be taken from these hemisphere within an instant.  With the challenges that Lennon continues to face (now and in the future) I want to be sure to celebrate all my children and let them know I love them but also that I appreciate them. I have been given the bests gifts with each of them, a little more insight each time and a little bit more gratitude and I am honored to call myself their mother.

What we know and what we don't know


There have been many questions to why Lennon would/does need another transplant. Let me first say that he is medically stable. This there is no "rush" per say and with that being said, we know the following:

Lennon has a clot in the portal vein which is one of those important elements. He also has a thromboses with the hepatic vein and then there was a third clot found but I don't know the state of this one at this time. The issue is because the portal vein is clotted, the body created quite a few more vessels. If you know Lennon, have seen him you will notice lots of lots of blue lines (veins) on his belly and the back. This happens because the body and liver will work together to get the blood flow going. However, for Lennon this is not the best thing because it has left him with a coagulation disorder and at a high risk for bleeding. To put it in other words, the veins can be compared to when we get hemorrhoids, excess stuff going on.  This means that we have to be watchful for bleeding at all times because he could bleed from his tube, internally which he would vomit or defecate out.

We also know that from before when his EBV levels were high that he has dealt with and deals with hepatitis and that his liver is working towards cirrhosis. Cirrhosis occurs in response to chronic damage to your liver. With mild cirrhosis, your liver can make repairs and continue its role in the body. But with more advanced cirrhosis, more and more scar tissue forms in the liver, making it impossible to function. Some of the symptoms we will be watching are :
  • Fatigue
  • Bleeding easily
  • Easy bruising
  • Fluid accumulation in your abdomen
  • Loss of appetite
  • Nausea
  • Swelling in your legs
  • Weight loss
I also wanted to add that the ultra sound last week indicated no fluid but rather enlarged organs which is good and bad.

Now that we have this information we talked more about the transplant. What are the chances of him surviving this third liver transplant. Well the fatality rate is 10% for most first-time transplant patients. Lennon is somewhere between 30-40% according to UVA. Which leaves us a little bit in the quandary because we really need to evaluate if these numbers are worse the risk of loosing Lennon during the surgery, or if we should simply enjoy life while we can! This weighs heavy on my heart.

There is also conversation about sending him out of state. Here is why. Our local fantastic hospital pretty much only handles first time transplant patients. Cases like Lennon where there is a lot of scar tissue and additional routing issues with veins etc are often send to specialized hospitals. The closest (and biggest) is in Pittsburgh.

The decision we made for now is to move forward with the evaluation from the other hospital. The thing about it is that the docs now need to write letters for insurance approval as well as to the hospital who may take the case. It also means that if the other hospital (which may or may not be Pittsburgh, could be Miami or one other one - though the leaning is towards Pittsburgh) will need to accept Lennon as a case. From there we have to schedule an evaluation - this means travel for Lennon and myself and staying in Pittsburgh for the time required to check Lennon out - generally 1-2 weeks.

Since we are worried about having to make a decision, I am trying to hold of on any medical decisions until the other hospital had a chance to look at Lennon's case and do their evaluation. They may have different numbers for us. But this will be a high or higher risk surgery without question.

This is kind of what we know right now. The docs did say that Lennon could be the way he is for 1 or 2 years maybe even three. They don't want to wait with the approval or evaluation until he's too sick (gosh I love them). So we will move forward with the tests and go from there.

I still have a difficult time to wrap my head around this all. The state where Lennon is, the decisions that may need to be made. Once again we are reminded to be grateful and to not take things for granted. Appreciate what we do have, dream for what we want without hate and judgment.

I will leave this for now, knowing that I have him for this minute. Honoring and being grateful for the fact to be his mom, to have my other children, to be surrounded by people who love and care for us.

It is one day at a time - each day filled with love and appreciation.

Milestones


We all acknowledge that our children have milestones at certain ages. When they start to crawl, walk, talk, switch from the bottle to the sippy cup. Lennon has reached most of these..well he still drinks out of a sippy cup for travel reasons though he's capable of drinking out of a regular cup.

Lennon is not fully potty trained and its been a battle I have chosen not to fight until Lennon was ready. With all the medical issues there was no sense or need to push it. We also didn't know if he could tell when he had to go or not. Sometimes he could and would while most times he wouldn't.

It's one of those milestones I didn't think I would ever see and I had accepted to be what it is. Lennon always seems to amaze me one way or another.

Yesterday, Lennon took his diaper off and put on his shorts. He used the potty every time he needed to go. So today we decided to encourage him to do the same again and Lennon did not have one single accident. He was so proud of himself every time. Way to go Lennon!

I still won't push the issue over night as he is hooked to his feeding pump and if he had to go, he wouldn't be able to do so. Travel may seem a little tough too though we had noticed that in the last few weeks if we were out and about he'd used the bathroom. I don't know if he could hold it however half way into town. He is taking medications that help him urinate and such. Anyway, tomorrow I am shopping for big boy underwear with spider man and sponge bob!!!

Oh and by the way, sometimes when Lennon is in a mood to respond and you ask him where his sense is, he will tell you its in his brain!