Today starts the first ever short bowel syndrome awareness month! Feel free to ask questions, share his blog & wear blue to honor our little warrior!
Jaxson was diagnosed with short bowel syndrome shortly after birth when his surgeon discovered all but 12 centimeters of his small intestines were dead as a result of gastroschisis. All but one of his hospitalizations have been directly related to short bowel syndrome.
Update on Jaxson- He is still in the hospital, we’re going on 3 weeks now. He is stable & happy and loved by everyone here. Physical therapy is still working with him every day, some days he likes it and other days he fights it. My mom and her best friend visited over the weekend- this kid is such a grandmas boy. He lights up when she walks in the room and cries when she has to leave.
As far as when we’re going home- I hope it’s soon. We’re just waiting on our home health company to decide if they want to administer the octreotide at home. They only have enough for 100 days and I think they’re afraid they won’t be able to get more after that due to the national shortage of this medication. It seems to be the only thing stopping his GI bleeds so it’s important that he get it everyday. As far as I know, he would need it everyday until he gets his transplant unless his GI Doctor decides otherwise.
I spoke to the transplant coordinator at Lucile Packard in Palo Alto, California on Friday to try and get him evaluated & listed there. They are already in the process of obtaining all of his medical records & I’m waiting to hear back from them to see if and when they want to schedule an evaluation. This will consist of all the same tests and procedures he went through in Pittsburgh. According to my research, they have done more intestinal/liver transplants than Pittsburgh. I don’t have my paperwork with me from our evaluation in Pittsburgh to prove that, I’m just going off their website. I think both are great hospitals & it would be awesome if we could get him multi listed. He needs this transplant ASAP, so I’m willing to do whatever it takes to ensure he gets “the call” soon.