Monday ended up being about an 18 hour day for us at the hospital, but Mason as always was a good sport. We had to check in at 7:30 am for his CT (I'll explain why he got a CT next) and then we were supposed to go to the Cath lab at 9:30am for his partial heart cath and biopsy, but they had an emergency case (a very sick heart transplant kiddo) that got put in front of us... so Mason didn't even go to the cath lab until almost 2:30pm. We have been that emergency case a few times, so I totally understood, it just made for an extra long day! Poor Mason was fasting that whole time too, because he was put under anesthesia for the heart cath. Mason did rather well waiting, just got a little 'hangry' towards the end of our wait! After that we did Mason's monthly Ivig infusion and headed home around midnight. I'm all for doing 'two-for-one' visits to the hospital, so that's why we timed it with his IV infusion.
(Waiting for his CT)
(The coolest pirate ship CT machine ever!)
What about his biopsy results?
The results were not as good as the last one he had in August ( which was the best he'd had in 3 1/2 years!!) but it wasn't terrible either. We've had much much worse though , so we will take these results!! (For transplant families who understand the score it was C2.5 V1 ISHLT 1R pAMR 0) Some slight cellular rejection (which isn't as bad as antibody-mediated rejection.... the type he usually has struggled with). The plan for now is to optimize his immunosuppression meds Prograf and Imuran (going up on the doses a little) and stay on his maintenance dose of steroids, but nothing major. I am kind of glad the team doesn't think it necessary to do higher doses of steroids right now, but I sure hope it is the right thing to do! It is a hard balance to keep his heart happy (out of rejection), but not be so immunosuppressed that he's always sick with new infections or illnesses!
Mason's DSA's (donor specific antibodies) were also elevated from last time, but oddly his antibody mediated rejection was a little better this time!! He will continue his monthly Ivig infusion treatments to keep the antibody rejection under control and the transplant team is going to keep an eye on his heart with monthly echoes. If no rejection symptoms pop up sooner he will go 6 months before his next biopsy.
(Braiden and Mason celebrating hover board style!)
Even though his biopsy results weren't his personal best, we will take them and run! We are celebrating that his coronary arteries are healthy and that the only rejection found is mild! We continue to celebrate and be grateful for his special heart each and everyday... for because of his thoughtful donor our Miracle Mason loves life and brings joy to our home!
On March 21 Mason his scheduled to get new rods in his back. They will be magnetic, which means no more surgery procedures twice a year to expand them with his growth! He will simply be seen in the orthopedics's office every 6 months and they will expand them by putting a little magnetic widget up to his back. Modern medicine and technology is absolutely amazing!!! We expect to be in the hospital for 3-4 days to recover from the surgery. Please pray with us that it goes smoothly and we will really go home that quickly!
Love this quote:
"It is your reaction to adversity,
not the adversity itself,
that determines how your life story will develop."
~Dieter F. Uchtdorf