Bodie had his 2 month cardiac catheterization and biopsy yesterday, followed by his 3rd 12 hour IVIG infusion, and it all went really well!
His pressures looked WONDERFUL! His pressures at his last cath (in mid July) were a little elevated. They weren’t high enough to warrant intervention, and they assumed it was likely because his heart was still settling. I’m thrilled to report that yesterday, they were WAY lower than the last cath! His Right Atrial pressure, for example, was at 14 a month ago, and now is down to a 3! The cath doctor was very happy with the results She said “he’ll be feeling a lot better now!” (Which I thought was odd since he actually seemed to be feeling pretty well going into the cath – but either way, it was music to my ears!)
His biopsy showed a 1A for rejection, which is perfect! That means some immune cells are there and happily coexisting with his new heart, but not feeling any sort of need to attack his heart. So his immunosuppressants are at a high enough level to ward off rejection, but not so low that his immune system is completely nonresponsive. Hopefully that means he’ll be able to handle colds and other illnesses circulating around. Only time will tell, and it can always change. But for now, we take it and rejoice. It’s the best possible news we could have received!
When he woke up from his cath, his first question was “Panda???” The kid was starving going into the cath. So they discharged us from the cath, he ate the Panda we had delivered, and then they checked him into the Short Stay Unit for his IVIG injection. He slept most of the afternoon into the early evening, woke up long enough to eat pizza from California Pizza Kitchen, and then slept most of the night.
He was done with the infusion at around 4am, but they let us stay to sleep a little longer before we discharged at 6:30am. I really appreciated not having to drive back to our hotel at 4am! Today, Bodie is tired, but managing ok. Hoping he recovers more quickly from this round of IVIG than the last!
Today my Facebook feed was filled with back to school pics and pics of fellow heart parents dropping their kiddos off at Camp del Corazon. Bodie was supposed to start High School today, and I was supposed to be dropping him off for Camp del Corazon next Friday. So, today is extra bittersweet for me. But if there ever was a reason to miss your first day of High School and camp, getting a brand new spanking heart is the best one I can think of!
Thank you so much for your continued prayers for Bodie! By all accounts, his body seems really happy with his new heart, and we know it’s due to all of your prayers! Please, please continue to pray for him. We covet your continued prayers for:
- His heart to continue to thrive. He’s doing so well, but not out of the woods yet. We’re doing home planning with the team, but we have to get through his next cath and biospy (scheduled for Monday, September 9th). If those both go well, home should be very quickly thereafter! So please pray that Bodie continues to heal and accept this new heart.
- His vocal cords to heal. This is currently his Achilles Heel. We are hearing some sound (we think), but it’s still very faint. We have appointments with the ENT and the Speech Therapist next Tuesday, and we should know more then. They’ll be scoping him to see if there’s any improvement in either his vocal cords and/or swallowing. Please please pray for significant improvement! We’ll be talking to them about things like additional vocal cord injections, likely trajectory of healing (i.e. if the NG tube is looking like a long haul thing, then we’ll be pushing for G-tube instead, etc.), potential surgical options, etc. So lots riding on that appointment and we appreciate your prayers.
- That both Bodie and Sierra transition back into school well. Today was Sierra’s first day of her Senior Year (it’s killing me that I’m not there!) and was supposed to be Bodie’s first day of his Freshman Year. We’re working with his Academic Advisor and Counselor to best help Bodie do classes remotely for now, with the goal to transition to on campus 2 days a week once we return, and full time on campus by January. But we don’t have any books or materials yet, so he’ll be starting a few days late. Please pray we can easily keep him caught up in school – and that Sierra has an amazing Senior Year!
- Please continue your prayers for the donor family. Because we don’t know anything about our donor, we have no idea whether the donor was a child (with parents mourning the start of a new school year without them), or a parent (with children now facing starting school missing a parent), or maybe a teacher whose students are missing them. But it’s very likely the start of the school year is bringing extra levels of sadness and loss to Bodie’s donor family in one way or another. So please, please pray for extra grace and comfort for them today.
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