Lennon’s ammonia was 99 yesterday, but I didn’t get the phone call until this morning. We knew something wasn’t right because he was tired, aggressive and emotional (sign something is wrong). So we went to UVA and had his blood levels checked and like I said I didn’t get the results until this morning. I suspected as such but I guess part of me wanted to be a fluke or something else. I am a little distraught over it, because he was doing well, the transplant appeared to have done the trick but at the same time we knew it was not a 100% cure. Of course a level of 99 is better than the numbers his body has seen in the past, but with that being said, if he has a healthy liver than any number above norm would now just be as effective or defective (your interpretation) than on anyone else.
This morning I had to keep him home from school and scramble to get his private duty nurse in here because I had a meeting to attend. The issue is had to school agreed & approved that the nurse could go to school, than it wouldn’t have been an issue..she could have just met him at school. I kept him home because the dr. wanted him on a 24-hour pedialyte maintenance. I don’t trust him going to school being hooked up. So I am a little frustrated because this would have been an opportune time that he could have used a nurse in school. On the other side the company that offers private duty nursing says that if I want a nurse in school …well that can happen…so they are going to figure all of that out and we will move on from there..
Lennon has another appointment tomorrow with Gastro as well as hematology as he still has ongoing blood issue and balancing the blood thinner with the blood thickener is a tough one…so the lesson …I don’t know.. it just appears that ones again when we begin to relax because things are going well…something goes awry.. I need to remember one day at a time..one second a day