Lennon and the 4th of July

So this past week Lennon has been spitting/vomiting, but transplant has no real understanding of why he might be doing this. However, there appear to be several options. He picked up a stomach bug? Could be but doesn’t seem reasonable because his spitting/vomiting is not consistent enough He is producing too much acid and the prevacid and sodium bicarp is not enough to for him He has too much air, which makes him gassy and could cause spitting up The NG tube as curled at the end and the feeds are going to the asaphagus. He has another infection, common to the transplant routine. It appears that there are some infections that occur after a period of time after the transplant On Thursday, I took…

the stent removal tomorrow. All the top dogs (transplant and gastro) are thinking that Lennons problems are because of the stent that didn’t fall out when it should have. Thus given him issues in the colon area. They have been treating him with a med, that should eliminate nausea, speed up the process of digesting, and take care of the reflux he is dealing with right now. The docs think that after the stent removal all his current issues will go away. The poor kid has the major case of diarreah. Since the study yesterday his belly has swollen and gotten bigger. Again the contrast has upset his insides and again they tell me that after tomorrow it should go away. There are common risk…

So Lennon had his initial meeting with the transplant team. I am scared, worried but like the outcome even though it bares quite a few risks. Lennon has been doing ok but has not been sleeping well. He has been drinking and eating, so I don’t think that the ammonia is elevated in the “danger zone”. In addition, his attitude and behavior indicate that it is not over 100. We certainly need to watch him and do the things we know to do: Gatorade, MCT oil, sugary things etc. OK back to the transplant… Lennon will receive a whole Liver as opposed to a part of a living donor. The reason being is that since the Urea Cycle Disorder is Genetic, there is a pending…

So yesterday Lennon received another chest tube because he has fluid everywhere (again). Today they did a biopsy – though they are not suspecting a rejection issue – they are hoping/thinking that they can find some answers to Lennon’s situation. They also did a CT Scan as an ultrasound (again) would have not been beneficial and the scan may (or may not) give them some answers. For the Scan and the biopsy Lennon was put back on the breathing tube – and we were told they wouldn’t take it until tomorrow. Do they not remembe the last time, or the time before that? It worries me beyond belief. It worries me that they are worried and they don’t know or understand of what is going…

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…