It’s been two whole months. Wow. I a lot has happened since. First and foremost, Graham is doing GREAT! He’s at home running (!!!) and playing constantly. He is continuing to expand his pallet, though cheese toast and bacon are still at the top of his favorites. We had Christmas with just the three of us, Zach, Graham, and I. Santa got Graham some Pixar Cars cars and a fun racetrack. He also got a pokemon game from Mom and Dad and now we have a pokemon fan in the house. The hospital has plenty of pokestops, a gym, and a plethora of pokemon so that has provided a fun incentive for going back.
As for the medical front, we’ve had a couple of minor road bumps. Graham had a stent placed due to the pressures around where his new heart was attached. This was done easily at his six-week cath lab. It was a quick overnight stay and somewhat expected. As we were leaving he kept saying “It’s time to get out of this stinkin hospital!”
Between our own medical ailments, Zach and I caught a cold. Since we had symptoms at different times, we took turns taking Graham to our respective parents’ houses to [try] to avoid him catching the virus. Graham now thinks he has three houses and he wants to stay at all of them “forever”. We are beyond lucky to have both sets of grandparents so close by. They have been true heroes this past month (and our whole lives) helping out.
Graham has had 0 rejection in the last two cath labs which is fantastic. This new heart is working beautifully.
We were most recently in the hospital for a week once Graham caught the virus Zach and I had. Thankfully he didn’t have major respiratory symptoms, but he did have a lot of GI issues that kept him under observation for several days. One of the biggest issues with dehydration is how it can throw off his medicine concentrations and we have to adjust the dosages we give him. This added a few more outpatient labs, but it looks like we are finally out of the woods with this one. Again, the only plus side to hospital stays, besides pokemon, is seeing the amazing people that took care of Graham. We got to reconnect with our favorite TCU nurses as they took care of Graham during this stay, as well as play with our PICU team when they came up to visit!
I post shorter updates on our Facebook with pictures if you want to follow along there – @COTAforGraham.
Thank you all for your support, I cannot believe we reached the COTA goal. There are no words to describe how thankful I am that Graham will continue to have financial support from COTA with his transplant-related expenses for the rest of his life. We are forever grateful for your support and love.