We are safely home!
Yesterday was a good day with lots of information. First we saw Dr. Koenig. I cannot tell you how heartwarming it was to watch Alex with Dr. Koenig and LaKeesha. He could not stop hugging and kissing them. He was just SO excited to see them and the feeling was mutual. They let him have free rein of the office and kept him busy while I checked in and talked to the medical students. I am glad with all that Alex has to endure in Houston, he truly loves these special ladies. They are such a big and important part of our lives. After spending so much of the last year in the hospital they are so much more like family.
So on to the appointment... We discussed the upcoming flu season. As most of you know, Alex has had the flu every year since he was born. Each year he has been progressively sicker. We decided that from September to March we are going to have be EXTREMELY careful with Alex. We will be limiting his exposure to crowds and to children. We will continue to enjoy playgroup, but will not do birthday parties, sunday school, etc. He also will not be allowed to go to stores. Dr. koenig will also discuss with Dr. Pacheco whether we need to have Tamiflu on hand. We also discussed how we will handle Alex's high fevers should he get sick.
The next discussion caught me by surprise. As I posted last month Alex had a seizure in the OR during his liver biopsy. This is Alex's fourth or fifth seizure. All have been pretty major (tonic clonic for all you medical people). Dr. koenig is concerned about this. She does not want to add another medication to Alex's long list if we can help it, but we also cannot allow him to continue to have seizures. So we decided we would watch for now, but if/when he has another seizure we will have to put him on seizure medication. She also let me know that Alex's EEG was not normal last year which I did not know.
The biggest discussion was in regards to Alex's replacement fluids. Currently Alex is hooked up to two tubes. His Jtube goes directly into his intestines and is the tube we feed and give medications through. His Gtube is in his stomach and is hooked up to a bag that drains bile. Normally, you would not have bile in your stomach because it is made in your intestines. But Alex has reverse motility where it moves backwards into his stomach. We also have stomach contents. In a normal person these would leave the stomach and be reabsorbed in the intestines. In Alex's case his stomach doesn't empty at all so we have to drain this fluid out into a bag. He is currently losing almost a liter a day in fluids and electrolytes. We have to replace these fluids through Alex's port (permanent IV). So all that to explain what this discussion was about... Dr. koenig would love nothing more then to be able to "deaccess" Alex's port. (Take the needle out). A central line infection always has the potential to be deadly especially in a kid like Alex with an immune disorder. However, we also don't want Alex to be dehydrated. Dr. Koenig asked us to keep track of Alex's fluid balance (his in's and out's) over the next little while and try and decrease his replacement fluids.
After Dr. Koenig's appointment we headed to see our GI. I knew they would not be in agreement about decreasing replacement fluids and they were not! They are adamant that Alex needs those fluids. So after a lengthy discussion we came to an agreement that everyone is happy with. We are going to hold Alex's replacement fluids for one night and do labs and urine smaples the next morning. If they show Alex to be dehydrated we will continue as we have been. If they do not show Alex to be dehydrated, we will try and decrease the fluids. i am very comfortable with this plan.
We also got some good news. While the mitochondria in Alex's liver do not look good and do not function correctly, there is no active inflammation at this time. So while we know his liver will detiorate over time, at this point it is still doing well. Dr. Koenig had already told us she thought liver failure was years away, but it was very nice to have that confirmed. We will repeat liver biopsies every 1-2 years or more frequently as indicated by the labs.
So all in all the appointments went very well. We also got to see some of our friends which always makes the trips to houston better. To those of you we didn't get to see this time hopefully, next time.
A cute Alex story to finish... Alex has picked up a few French phrases. And he loves to "speak" French. We went to a Mexican restaurant for lunch on Monday and he insisted on wearing his tophat in. As we were making our way to the table he was tipping his hat to all the employees and patrons saying "Bonjour". i don't think anyone knew what to do with him! That's my Alex. You never know what he will do or say!!!
Phew!!! that was a lot if you got this far, I'm impressed!
Thanks for following our journey,