Jaxson had his annual follow up appointment in Pittsburgh on October 20th. This appointment is to basically see if he’s progressed over the last year and determine where he needs to be on the transplant list. We met with a GI doctor, a transplant surgeon and our transplant coordinator. They took his vitals, weighed him- He gained another pound (yay!!) and went over his medical history over the last year; tests, procedures, infections.. and decided that because of his recent GI bleeds, the fact that he’s probably running out of central line space, and his poor liver function he needed to stay listed as a status 1- meaning his case is among those that take priority over the “less severe” patients awaiting the same transplant. While there, I decided to take the opportunity to ask the transplant surgeon one of the questions that has been on my mind a lot lately- why do the number of small intestine/liver transplants performed at Children’s hospital of Pittsburgh continually decrease each year? His answer was basically because they try alternate routes to hopefully avoid the need for transplants- “because in 7-10 years, there will probably be a need to re-transplant the same organs.” He also stated that their center is not the only one that is doing less transplants. Which according to my research, I disagree with. His response was not reassuring to me at all, and I kind of feel more uncomfortable keeping Jaxson listed there. It seems, to me at least, they’d rather a patient die while awaiting a transplant than perform a potentially life saving surgery all because they feel that it’s not worth it. I’m gonna need to do some deep researching, and continue to be the best advocate possible; because Jaxsons life matters and I don’t want to leave it in the hands of doctors who are the least bit unsure. I need to be certain that he is listed where he needs to be- whether that continues to be CHP, or elsewhere, I will do whatever it takes.
On another note, Mr. Jaxson likes to keep me on my toes! His central line has been on the verge of breaking over the last few weeks. Between him becoming a more active toddler, and the weight of the added extensions at the base of his line, it was beginning to stretch. I did my best to keep it taped down & secure, and during our last admission the surgeons came by and tried gluing it.. but that only worked for a short period of time. As we were exiting our flight in Pittsburgh, the line caught something and before I could catch it, it snapped. I quickly clamped it so blood didn’t drip everywhere and had he flight attendant get someone to call an ambulance. The southwest employee working the gate called and waited with us until the ambulance arrived. Meanwhile trying to make Jaxson and I comfortable and calm us both down from crying. It was stressful for Jaxson and I- him more than me. It took us about an hour to get to the hospital, we were placed in a room and a few hours later the line was repaired. We got to our hotel around midnight. (We landed at 5pm) The next morning, Jaxson and I found somewhere to eat breakfast, then went back to the hotel and packed and we were off to his appointment. After that, a shuttle picked us up and took us to the airport. After 7 hours of flying time and one layover, we finally arrived home around 11pm on October 21st. It was a long two days for us, but we made it. Jaxson did exceptionally well on our flights there and back considering we were in an airport/airplane longer than we were actually in Pittsburgh. Not once did he fuss while flying, which was relieving to me because I didn’t want to be that mom with an inconsolable toddler on a four hour flight.
We also got to experience seeing the colors of fall in person for the first time ever. It is my favorite season, and as a native Arizonan I definitely enjoyed the sights. The best views were when we were descending into Pittsburgh, I looked out the plane window and saw trees everywhere- all different shades of reds, oranges, yellows and browns. I immediately wanted to put on boots, find a pile of leaves and listen to them crunch beneath my feet.
Despite the beautiful weather, we are happy to be home.
***I would also like to add that since we’ve done the media, my father has opened a bank account locally that you can donate to for transplant related expenses. You can do so at any desert schools federal credit union under the name Jeffrey Dahl Sr- transplant fund. Or through PayPal using the email address JaxsonsTransplantFund@gmail.com