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 of 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 issues 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

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  1. Oh Petra, what a discouraging time this must be for you. Keep your head up, breath deep and pray to God above for peace and understanding. I will be praying for you all.I'm not sure I completely understand, but maybe you don't either. Since a UCD is a genetic disorder is this a sign that the genetic component is taking over and effecting his liver and recreating the problems he had before? Or am I way off?? I'm just thinking in relation to James we were told that lung transplants had been attempted but those lungs also developed PAP because of the genetic component of the UCD …and so a transplant was not an option for him.I hope that things will quickly stabalize again and pray for strength as you try to come to terms with what this may mean. All the best also on sorting out the nursing issues. I have just had a flashback of all the challenges of balancing a unhealthy child, and nursing and appointments and family life … I have much to be thankful for now and sometimes need to be remind again how easy life is when you're all healthy – it's always in the back of my mind, but sometimes I need a refresher again.Much love,Steph

  2. Steph,I would like those answers myself and I really don't know where things are. I knew that there was the chance that this could happen but I think part of me was hoping that everything would be okay. So I think the potential is that the genetic component is recreating the problem we had. I can only hope that perhaps that the transplant has diminished the episodes, but of course that doesn't change the effects of the disorder. CPS is one of the top rare ones and if I understand correctly transplant is the only way to manage it. I am hoping to have more answers tomorrow. Thanks so much for your input, it has always been helpful as it continues to do so today.

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