Jayden Update

Ok So I know I am way behind on updates and pictures but I have been crazy busy. Here is a quick update on Jayden.

Two Thursdays Ago Jayden just out of no where had a fever. I being the "amazing" worrier that I am was completely obsessed with worrying. With "liver babies" you just never know if a fever is "just a fever" from something minor and relatively normal or if its something liver related. I was worried it was liver related. I got him an appointment at BAMC the next day but when we went to the appointment they said I was scheduled for the day before (the day I called) which is impossible since I called after the time they said I was scheduled. So they were very nonchalant saying oh sorry they must have told you wrong or just scheduled you wrong!! GRRR! I called his transplant team and they said since his fevers had gone away I could wait until the following week. Or take him to the ER if he had fevers over the weekend. He was fine all weekend then again Fevers on Tuesday. Ugh frustrating is underestimating the entire situation. Wednesday he had an appointment with the transplant team. It was supposed to be blood work and a weight check. But with his fevers it turned into an actual visit. Jayden lost the pound he had gained :( He had a low grade fever and it turns out that he had a double ear infection, poor baby. Well they added an antibiotic to his med list and thank god fevers went away and yesterday was our final day of the antibiotic course. He is doing fine! He had an appointment yesterday again. He gained the pound he lost Yay! Hopefully only gaining and no losing is in his future. We just have to get him to the 3rd percentile and then they will wean him off of the G tube! :) While we were there for a weight check they told us they were going to make him see the Dr they had to discuss some things with us. So we saw the Dr and they said that his prograf level (antirejection medication) was low and they needed to increase the dose, and that one of his liver function numbers was elevated (not good) they said sometimes it happens when you are sick (although they doubt this is the case because even with his fevers his levels were completely normal) So they think he is going through some minor rejection. We were sent to the hospital to do an abdominal ultrasound, and they increased his steroid (6x's the dose he is taking) for 3 days. On Friday we will go and have his levels rechecked and if the levels go down then problem solved. If the levels go up a little or stay about the same we will continue the increased dose of steroids for two more days and do blood work again on Monday. If his levels increase a lot then he will be admitted on Friday because they will have to take further actions to treat the rejection. I am shocked he is doing so good, he is crazy all day long, so this was completely out of no where for us. I am so scared he has never had a rejection episode, they say if we caught it early enough everything should be ok but I am just so scared at the what if they didnt. I know I should always have faith and hope for the best which I do. But I cant help but try to prepare myself mentally and emotionally for a worst case scenario. I hope this doesn't sound wrong because Jayden is my ENTIRE world, my heart, my everything. My Love for him is unmeasurable and Immense; but I have to prepare for the  worst case scenario no matter what because I always think to myself I never imagined my baby would be sick but he was, I never imagined my baby would have to have heart surgery at under 4 lbs and barely one week old but he did, I never imagined my son would nearly die more than once but he did, and I never imagined my baby would ever need a transplant in order to survive but he did. So I am a little on edge when it comes to Jayden I feel like If I prepare for the worst and still maintain my faith then there is more of a chance that everything has a better chance of being okay.

Please pray for Jayden and ask everyone you know to do the same. I know we didn't come this far to lose him or for him to suffer and go through another transplant or all the other ugly scenarios that pop into my head when I hear the word rejection. I just hope I'm over reacting and this is all resolved.