So Lennon was admitted AGAIN into the hospital. Ammonia was 327, we spend 15 hours in the ER, waiting for the PICU to open up a room. He was not mentally coherent, didn’t know where he was, probably who he was or anything else for that matter. They sedated him because he became too agitated (sp) and they were afraid he was going to pull his line out. This morning his levels were 115, which is not great but better. They are keeping him until he begins to eat proberly, so I’m thinking he might (i mean might) come home tomorrow, or Monday. They don’t want to see us again (haha) anymore I want to see them.
On another note, if his ammonia elevations keep it up, he could be looking at a liver transplant, which essentially will “cure” the UCD but give him other issues – no immune system, will be on other medications. And so forth. If it does come down to that, I hope that his body does not reject it and that this could be life-saving for him despite the risk attached to the transplant.
I have not wrapped my head around all of this. I am at work, exhausted from being up a long time, sleeping a few hours and hoping like hell that he will be ok. He was more coherent this morning that yesterday but I still didn’t see a huge improvent in recognizing my son. He was cranky for sure. They had him in a crib for safety overnight, but this morning he was SO NOT HAPPY about it. Can’t cage the Lennon, ya know. They are giving him a regular bed now – per conversation with my partner.
Quite a few people have asked me why I come to work and I’m like, well you are not paying my bills, someone has too. Right? Thus we shift change in order for us to keep our job and earn money. Besides I can’t do anything at the hospital, exept sit there and keep him as calm as possible – keep in mind he is extremely ADHD and sitting still is not his best skill at best.
I love this kid – he is amazing and right out a miracle. He is resisting death without a doubt, he is a fighter – and I hope he continues to fight because he is the coolest guy ever – ok my other kids are cool too but they are “normal” and not sick or anything. This makes it hard too. Lennon gets all the attention, and my other kids have to “suffer” though they are not neglected in a sense of not having food and shelter I feel that Lennon’s disorder often keeps me from equally sharing affection among everyone else.