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

We are going to the Floor


Lennon is out of Intensive Care!!!!!! We are currently waiting on a room but he is leaving the PICU. I am elated about his progress. We do have to get him to eat, but this will take time I think. This is a good day. In some aspects its a sad day, the staff here at the PICU has been excellent in caring for Lennon. We have come to love them, be their friends and share life stories with them. They love Lennon. But what is not to love about him? He is amazing with a shining personality. He has affected everybody in such positive ways. He is a miracle and keeps inspiring me each and every day.

It was a Popsicle Emergency


Lennon wanted a popsicle - color green. His nurse went looking in the PICU freezer, in the freezers on the floor and not a popsicle in sight. Upon her return and baring the news, another nurse called to oh probably nutritionist staying the complete floor is out of popsicles. One hour later, Lennon received not only one - but two popsicles - on purple and one white. So he is still waiting on the green popsicle :o)

Lennon is doing great. He is drinking water, though it must be done slowly or his withdrawals will get the better of him. He is playing, talking, interacting, fighting, and hating everything. He is Lennon!!! He is calm, he is collected, he is smiling and laughing and calling for his mom when he is in need of a hug.

To say that he is doing great, is by far an understatement. For someone who has been bedridden, mostly on his back, he has control of his head and neck muscles. He is sitting up longer and longer each time. Standing is not an option (yet) because the way I know Lennon it won't be long.
He should be moved to the regular floor in a couple of days, and then after some time there perhaps go into KCRC for some rehabilitation.

I am still holding my breath, though I should be able to let go a bit. But I am still nervous that something is going to go wrong. So I think this will just take me some time, but I hope this nervousness will pass probably not completely but more so that I don't worry about relapses as much.

Cautionary Happiness


So, Lennon is out of bed, and in a wheel chair!! He still has the nasal oxygen, but is doing well. Last night, he opened two of his christmas presents with eagerness. This morning he laughed, when I told Physical Therapy how he tried to scoot out of bed with the breathing tube in because he wanted to go walking. He is perking up a bit more each day.

He is a little on the cranky side, but who can blame him, right? I'd be cranky too. I am happy about hte progress he is making, but I am cautious about it. I cross fingers and toes and hope there are no other bumps in the road.

He is sitting without support!!!! And that is amazing for someone who has laid in bed for so long. Before long he will be up and running again.

His terms, his times ...he designates his own pace.

Cross your finger and toes


The breathing tube came out this morning. It is a watch, wait and see game. Here is to hoping that the tube does not have to go back in.

Overall he seems to be doing ok though. He has been a bit of a wild man trying to get the tube out, jump out of bed, sit up etc.

They are going to keep a close eye on him and see how he holds his oxygen.

Baby-steps


Lennon is doing somewhat better since the ballooning of the vein. He is still on the breathing tube but steps are taken to move forward that he will come of the vent soon. He has a lot of fluid once again and docs are making sure that none of it will end up in his lungs. His X-Ray has improved daily, but he is still quite puffed up with fluid.

Lennon is also awake more. He is coherent and alert enough so that one can ask him questions and he will either shake his head no, or nod a yes. He is handling this breathing tube quite well and is extremely calm. There is some amazement to this alertness as he is on three drips to keep him sedated. I just imagine that he has a high tolerance that not only was present before but build up since he got admitted for the transplant.

At this time we are playing the wait, watch and see game. I must say that patience is not everyone's strong point, but we must remember that Lennon does things in his terms on his own time. His belly has gone down by 4 cm since yesterday. It was at one point 76 cm due to the amount of fluid within his belly.

In addition, the fluid in his belly developed or rather created a rare bug that lack of information. In fact it is so rare that infectious disease control had not heard about it, so there are unsure of how long to treat it with antibiotics. Again, I remind myself that this is Lennon and things merely tend to be different, sometimes complex and difficult, but that is what we love about him :o)

Alright, here is the latest scoop of things.
Asyou know Lennon is having extensive fluid issues that constantly dump from his chest tube. He went through some scans to see if there is anything that could be done, other than surgery because he is not quite strong enought to handle that. Initially there was not angio procedure they could do, but wanted to tab his stomach to withdraw some fluid for testing of infection etc.

Well, after 8 hours they came in and told us that one radioligist could and would go in to balloon the portal vein. What this does/and did is to create a better flow but also relief pressure of the portal vein and the liver (which is working) and allow hopefully his body to start absorbing the fluid some more and less output from the chest tube.
If this is not successful, and pressure builds up again Lennon could be in the hospital for a long time until either a) his body takes care of things naturally or b) he is strong enough for surgery. In the mean time some docs are hopeful the angio worked, and while he is not completely out of the woods, there is minimal progress. I am hopeful, well I have to be because I must belief he will walk out of here.

Today they are working on getting fluid off so that hopefully tomorrow he can come of the breathing tube. But they are cautious because we don't want to fluid to go into the lungs.

So as usual stay tuned :o)

Reality


Lennon went back on the breathing tube for a pick-line, ct scan and possible upcoming procedures. I was quite upset over this because I feel that the longer he is on the breathing tube, the more he will struggle and take to recover. On the other hand, he is probably the most comfortable now. His heart rate is back to normal 112 as opposed to 163. He clearly was struggling to breath with all the fluid on him.

In the mean time, we had a reality conversation with one of the docs. The PICU is extremely worried and the reality of the matter is that he may not make it. Why? Because they don't know where all this fluid is coming from, why his body is doing what it is doing. Is it the leak in his bile duct? Is it the fact that his portal vein is not full functioning? Or is it something else that they are just not seeing? I am currently still waiting on Transplant to tell me about the CT-Scan and what they are going to do about getting him better.

I have to belief that he will walk out of here. He has fought for 5.5 years, why on earth would he quit now. Why would anyone put him through all of this and then let go? Death is not acceptable to me at this point. Which is a difficult balance because there is that reality factor mixing with hope, perhaps some false beliefs. But I have to be positive, there is no other choice.

As I am writing this, transplant came in. What happened in this past week is as followed:

His portal vein is completely clotted and another vein, the name escapes me, is partially clotted. So now comes the point for the docs: How do we fix it!?!?!?!?!?!?
They are not sure, some procedures that would be nice don't seem plausable, others might be too risky at this point. In addition to that they have to replace the chest tube since it broke and one of the PICU docs had to "McGyver" it. This should happen today and then the plan is to get him of the breathing tube. The hope his that it will help with the fluid reduction, though there has not been new fluid pocktes or anything else new in that matter. But you only going to get so much fluid out with a not-as-sealed-chest tube.

Now they are trying to figure out how to fix the portal vein. What kind of procedure seems possible, is a good idea, what wouldn't work etc.

I'll guess I'll be on pins on needles until then.

Reality


Lennon went back on the breathing tube for a pick-line, ct scan and possible upcoming procedures. I was quite upset over this because I feel that the longer he is on the breathing tube

But it wasn't truly progress..ok maybe a minute


So after the scans an all, Lennon was doing ok. And as usual as quick as you turned around he was not doing so well. It appears that his insides got quite upset and now he is dealing not only with another infection, but also with the inflamation pancreas i.e. Pancreatitis. This of course can explain his discomfort and is vomiting. He is again receiving assistance with oxygen because he was just working too hard on his own to breath.

My frustration right now is that he has barely any strength and muscle tone and I feel like that physical therapy should be in here on a regular basis working his arms and legs. I have been heard but I don't know if it will do any good. The doctors are hearing me, but then the nurses felt he wasn't up to it. My theory is that if Lennon starts to work his muscles more and receives more movement in his body, this will help his overall progress of healing and getting better. I feel with the assistance of physical therapy it would happen faster rather than later. Several doctors want him more mobile so that the fluid can do what it needs to do in a more natural manner. So I ask again and again why is physical therapy not in here working with him. I know that we are, we are making him sit up (ok well haven't since yesterday), but we have been working with him. He can't hold himself up sitting, he needs assistance and I think with consistency of help, he can improve and the lungs can do their thing and his body will do its thing.

Ultimately the fluid he is loosing is the fluid his body needs all the electrolytes and protein etc. However, the fluid is in response to what the body does when there is some kind of trauma to it. It happens when one bruises the leg, there is an edema that happens, alas the body is reacting to the change in ones leg. So that is why all the fluid I suppose.

I don't have much else tonight,

so till next time :o)

It smells like progress...


So Lennon appears to be more awake these days :o) He is attempting to speak his wants and needs "Mommy lay in the bed with me" or "I am thirsty". I think this is a YAY moment. On other hand, the fluid that was on the right is now on the left, and it is Ascites. So some information below that we have heard and dealt with.


Definition

Ascites is an abnormal accumulation of fluid in the abdomen.

Description

Rapidly developing (acute) ascites can occur as a complication of trauma, perforated ulcer, appendicitis, or inflammation of the colon or other tube-shaped organ (diverticulitis). This condition can also develop when intestinal fluids, bile, pancreatic juices, or bacteria invade or inflame the smooth, transparent membrane that lines the inside of the abdomen (peritoneum). However, ascites is more often associated with liver disease and other long-lasting (chronic) conditions.

Renal ascites develops when blood levels of albumin dip below normal. Albumin is the major proteinin blood plasma. It functions to keep fluid inside the blood vessels.


Lennon had a CT Scan yesterday with contrast of his abdomen and chest, and he will have another one related to the JP (draining) tube in his belly. The attempt is to figure out what is going on, and how can they fix it. Why all this fluid. My assumption is that he has just been too immobile, and that he has got to get movin'. He is having withdrawals from nacrotics and that is probably why he is vomiting and shaking terribly. But again that is why they are doing all the scans because he started to vomit the last time they found the pocket of fluid. So no assuming of why he is vomiting. They are trying to get him of the methadone slowly. But boy what a cranky little man, he does not want to be messed with anymore :o)

Well, that is all I have for the moment

Looks like progress....


Alright, Lennon is on the highflow oxygen through the nose, he is still receiving nutrition via IV, but also through the nose tube. He has been vomiting on and off, and it appears that his belly is full of fluid, that there is pressure on his stomach...makes sense to me... what doesn't make sense to me is all this fluid...his body doesn't appear to be absorbing it. He is pretty cranky, not quite out of it, but the methadone attempts to keep him mellow...which might mean that the vomiting could be from withdrawals as well, from all those narcotics. I asked one of the docs why he is vomiting, their response: That is a good question. I know that is why I asked. Anyway, perhaps she isn't the right one to ask with so many docs that are part of his care.

Overall, Lennon is supposed to be more mobile - which he doesn't want to be - but needs to, and he is supposed to take things in orally now as well, which he had a sip of water (yesterday). He is awake more these days, but just very quiet and mellow. I hope he gets to feeling better soon.