Poppy had a great night Thursday night, only requiring around .5L of O2 which was a great improvement from Wednesday night!! She was discharged from the PICU Friday afternoon, and so far seems to be recovering really well! Woohoo!!! Hallelujah!!!
Now we watch her closely this week for bleeding and drainage. God is so good- He continues to provide in every way, and she’s such a brave trooper! Thank you all for your unending prayers- we really do feel them and they mean so much to us ❤️
We would love prayers that she stay well so that she is healthy enough to finally go under anesthesia for her annual cardiac cath with biopsy coming up!! This has been scheduled and rescheduled due to illness numerous times, so we would love for this next attempt to happen. It is one of the best ways to measure rejection, so it’s really important that it gets done soon.
A couple of months ago, in hopes of addressing her ongoing GI issues, Poppy was switched from one of her antirejection meds, Cellcept/MMF to Imuran/Azathiaprine. Cellcept is a very good antirejection drug, but it’s downfall is that it can be really hard on the gut. After Poppy’s endoscopy and colonoscopy, the results showed that it was likely the Cellcept that was to blame for her tummy troubles, her transplant team decided since she has not yet had any rejection on her current Cyclosporine and Cellcept regimens, that it was worth it to switch from Cellcept to Imuran. The drawback of the Imuran, however, is that it’s not as great of an antirejection drug as the Cellcept, which makes this years biopsy that much more anticipated. The exciting news, is that she really seems to be liking the Imuran, as her GI issues have improved drastically since the switch!! Our prayer is that she can stay on her current antirejection regimen of cyclosporine and Imuran, so she can continue to move forward with the Intensive Feeding program in July, since her GI issues finally allow for some feeding interest and hopefully progress!
As a transplant mom, rejection is always in the back of my mind, just because it can act so mysteriously. Some kids can look bad and not be in rejection, and some kids can look amazing and be in rejection. Every time the heart goes through a bout of rejection, the heart takes a beating- depending on the degree of rejection, the heart has the potential to become damaged. Bad or numerous bouts of rejection can make the need to be relisted for a second transplant very real. So, while we really try not to think about it, it’s just a reality of having a kid with a heart transplant- it just is. So needless to say, these biopsies and check ups are always a little nerve racking 😉
Even though we hadn’t really planned to spend such an extended amount of time in Seattle this summer, our time together as a family has been such a beautiful blessing. We are forced to be in close quarters and get creative in our down time away from home…yes challenging at times, it’s been such a gift. Thank you Lord for this special time together ❤️