Day 19

Jayden had a rough start this morning he woke up not like the happy go lucky boy he usually is but like "Mr grumpy gills" as we call him! He slapped daddy in the face and said "NOT NICE DAD!" because daddy wouldn't let him touch and play with a sleeping baby.  So Jayden was put in time out in the waiting room of his Dr's office. He is really testing his limits these days. He is ornery and rude sometimes and this may sound weird but I am thankful in a way because if he feels well enough to feel ornery and be "bad" then he is doing good! Well the day got better thank god!                                                                                                         

 We have to make the most of our long visits and create a playground for Jayden in clinic. We made our very own slide for Jayden and he could not get enough of it! Thankfully, we were able to keep him entertained just long enough for the Dr's to come in. We went to the park again today! The park is becoming a regular thing in our day it is just so great to have some time out of the house for Jayden to burn off some of that energy and get to interact with others. 

So here was today's outcome for our clinic visit today. Jayden finally gained some weight! YAY!!! He gained 300 grams since his last weigh in. And unfortunately the good news kind of comes to a halt there. Jayden's Alkaline Phosphatase levels went up again they are at 34,000 that number should be in the 100's so needless to say it is extremely elevated and this is not good. The rest of his liver functions are all good so rejection and PTLD are not where we are right now. We are unsure of where we are going with this as of right now. We have more bloodwork to test for EBV and CMV again tomorrow, (the lab did a serology instead of the titers the clinic needed) so we have to retest that and if the EBV and CMV are positive then that may be the culprit. In this case His immunosuppresion medication will probably be reduced so his body can fight off this virus, the problem with that is that while the body is fighting off the virus it may also begin to fight off the liver. So we will have clinic visits a few times a week probably because they have to keep a close eye on rejection. If the EBV and CMV come back negative then we have to be referred to Hematology and Oncology because it may be something more severe. They are worried it may be his bone marrow. I can't even say I wish it was one thing or another thing because in both cases I'm scared of what may come. I almost wish it was the virus but then I worry that in fighting off the virus he will fight off his liver and thats a scary path. Then going down the bone marrow path is just horrifying. I can't even express how shocked I am that this is happening Jayden is doing so well overall. If you saw him you would never know anything was ever wrong. So when we go to clinic and they toss this out there I just feel overwhelmed and scared and angry and confused and so on and so on. Then I have to stop myself and thank god he is alive and doing so well, not all the liver kiddos out there have had such positive outcome. I know it could always be worse and count my blessings I must, but I can't help but be scared for what's to come. Please keep Jayden and our family in your prayers. 

Please pray for all those babies and children who have had or are awaiting their miracle, that God may keep them in his healing hands and they may overcome all the bumps in their recovery and their journey. And please pray for the donor family who has given Jayden this gift, who has given him quality in his life. They gave us a part of their baby so I could keep mine.