Alexa's Adventures--A story to be told!: Labs and Metabolic Clinic

Today we had another set of labs scheduled. We were just there on Monday-- prior to that we thought that we could try going to labs every 2 weeks. Clearly the fact that we were back today is an indication that we are not ready for every 2 weeks.
I had mentioned in my last post that Alexa's Liver Function Tests (AST and ALT) had been on the rise. They were inching their way up slowly to a place that would require many more investigative tests should they not go down. So Monday, I was really hoping that they were on the down trend. Things were looking hopeful...
Her doctor came in and was so excited to see that her ascites is gone! Completely normal! He was kind of surprised, and still bothered by the fact that he could not give me a reason for the ascites in the first place. He is a scientist after all, and they NEED reasons for everything! And the fact that it mysteriously came and went on its own, even after every test under the sun reported no abnormalities, will just never sit well with him. But it does with us....we gave her time to do her thing and she did. We are and have been weaning down her lasik (the medication that helps relieve fluid from her body) and as of Monday, coincidentally, Thanksgiving for us Canadians, she will be completely off of it if we do not see signs of ascites returning.

But back to those LFT's. Dr. A came in and told me that they had increased again. And for my own sanity, I think he decided to not tell me how high they had gotten. Alexa has had a cough since about Saturday, and the rise could very well be explained by the virus, however the continued rise could also mean a host of other things, one of the worst being rejection. So although, I had not been panicking, these numbers have definitely been weighing on my mind. If I had KNOWN that Mondays AST was 84 and ALT was 83, I think, who am I kidding, I KNOW panic mode would have set in. And I think they know this too.

Since I already had a metabolic appointment today, they asked that I come in a bit early to have our labs done again.
I got our metabolic nurse to give me a print out of today's lab results as I could not wait for transplant to call me in the afternoon/evening. The good news is that they are better. Not perfect yet. They could be lower. It would be nice if they were even lower. They still are slightly high. But they are better than they have been in the last 3 weeks. We are about as good as we were at our September 17th appointment. And as I was typing this, I got the call from the liver team with the rest of our numbers. FK is perfect so no dosing changes necessary! Phew!!! Again, I breathe a sigh of relief!

Meanwhile our metabolic team was super happy with her progress. It was nice to be sitting in the metabolic offices, and to not be anxiously waiting for our nurse and dietician to walk in with the dreaded ammonia results. For once, I did not care and did not even ask (not even for old time's sake!) It was nice not to have to document what she has, or more frequently what she had NOT eaten, as was more often than not the case with Alexa pre-transplant. We didn't care about how MANY calories she consumed and we didn't even plot her on the growth curve!
Instead we met and talked about all the wonderful things she has been doing and eating! We chatted about how school is going and different life is from just a couple of months ago.
They looked at her amino acids and were generally happy! The only one that was off is her arginine. It is low, as is typically amongst citrullinemia patients post-transplant, so they have started her back up on a low dose of L-Arginine. (one of the meds she was on pre-transplant). It's not the end of the world and I knew this day might come eventually. Chances are she will be on it for a long, long time.

As I mentioned earlier, we are celebrating Thanksgiving this weekend. And boy do we have a LOT to be thankful for. I am thankful for the wonderful doctors and nurses at HSC. I am thankful that we live close enough to be able to enjoy the luxuries that HSC has to offer. I am thankful that I married such a loving and devoted father who knew that the only chance his daughter had of living a life free of brain damage, was to give her a part of his liver. He did not waiver, he did not second guess himself. He just KNEW what had to be done. I am thankful that right now I have a healthy happy 5 year old girl who was given such strength and bravery. I am thankful that for the first thanksgiving ever, Alexa will be able to really enjoy a thanksgiving dinner and at least try turkey. I am thankful for our family and friends who have supported us along this route we have embarked on. The list could go on and on!

I asked Alexa what she was thankful for.

Her response:

I am thankful for cheese strings and cheese slices and wild wings mac and cheese bites!