While Bodie's sister and his classmates are studying hard for finals and getting ready for Christmas this week, Bodie had to take his finals a week early so that he and I could venture up to Stanford.
This week includes a clinic visit with echo and blood draw, a spine x-ray, a cardiac catheterization and biopsy, and a vocal cord surgery.
(But before we get started, can I just point out how much this kid has grown?!? He's sososoclose to 5'8"! He's 5'7.913" - this heart has been so good for him!)
He had his clinic visit this morning and everyone was really happy with how he looked. His labs and echo all look great - praise God! We need to get a spine x-ray because they're finding spinal fractures on a percentage of their transplant patients (I can't remember the percentage - I want to say 20-30%, but it might not have been that high). So they are now doing spinal x-rays at 6 months and again at a year with their transplant patients to catch anything that might be happening there. If they see anything, cardiology will refer us to Endocrine to manage that.
He just finished up in the cath lab with his planned 6 month cardiac catheterization and right heart biopsy. Everything continues to look pretty good from the outside, but transplanted hearts can be tricky and patients can be in rejection without even knowing it. So Stanford is very aggressive with monitoring their transplant patients, especially in the first 6 months. When one of the nurses asked if this was Bodie's first cath since transplant, he and I both laughed. This is probably Bodie's 5th or 6th cath since transplant (not to mention the 8 or 9 caths he underwent with his old heart). Needless to say, it's not our first rodeo (or last).
The patient before us ran over, so Bodie's procedure started late. Needless to say, he was more than a bit hangry and chomping at the bit to get things going. He and I had some good laughs this morning over the super stylish hospital gowns.
Once they put the Versed in his iv, he handed me the phone and started laughing.
(It's hard to tell here, but he was totally cracking up and being silly.)
He couldn't believe how fast it hit. I think he was asleep before they had him out of the room. Ha.
I just received a call from the nurse that they're all done, he did great and his numbers all looks good! Praise God! I haven't seen him yet, but will soon. Please pray the full results (including the rejection numbers) also look good when we get them tomorrow.
Then, because it would have been way to convenient for us to do everything in the same day, we'll head back to our hotel until Wednesday, when we come back to Stanford for Bodie's vocal cord surgery.
What surgery you ask?
Well hang on, because I'm about to take a super nerdy deep dive into Bodie's vocal cords and why he's having surgery.
In a healthy individual, the left and right vocal cords open and close and meet one another equally in the middle to serve two main functions: (1) they vibrate against one another to make sound, enabling us to speak; and (2) they close together to cover the entrance to the trachea, ensuring that foods and liquids don't go down the windpipe and cause the individual to aspirate.
In Bodie's case, the nerve that controls his left vocal cord was damaged during his very first open heart surgery at 5 days old. Function has never returned to that cord. So instead of moving in and out, his left vocal cord is essentially frozen, or paralyzed, in the open position. Over time, his right vocal cord became the workhorse cord, crossing over midline to meet his nonfunctioning left cord. During his heart transplant back in June, he received what is considered a "stretch injury" to that right vocal cord. So immediately post op, it too was paralyzed in the open position. That's why he wasn't safe to eat or drink for awhile post op, because he wasn't able to protect his lungs from aspiration. Stretch injuries are not uncommon following intubation. They're not nerve damage (like the injury to his left vocal cord), so they do heal as the body heals. And his did. I would say he's almost back to his baseline before transplant - the right vocal cord has pretty much healed.
So where does that leave Bodie?
Bodie still has a non-working left vocal cord, and a right vocal cord that has to work hard to do the work of both cords. He's not at risk of aspiration anymore, but his voice is soft and raspy, and always has been. It's very bothersome to him. We've been doing regular injections into that left vocal cord, which doesn't do anything for the function (it's still paralyzed in the open position), but it adds bulk to that left vocal cord, so the right one doesn't have to work as hard. The injections allow Bodie to project better and enable others to hear and understand him more easily. But the injections are only temporary and have to be redone every 3-6 months.
So this Wednesday, Bodie will be undergoing a vocal cord reinnervation surgery. Which sounds like they're going to make that left vocal cord work again. But that's not exactly what they'll be doing. Instead, they'll be taking a different nerve in the neck (one that he apparently does not need?) and will be attaching it to the nonfunctioning nerve. Over the next 3-6 months, the hope is that the nerves will grow together, and that left vocal cord will then be given impulses. It still won't function normally. Bodie's doctor said it's akin to asking someone to walk around all day every day carrying a 10lb weight with one arm. If the arm stays in a static position, their range of mobility won't be increased, but the bicep muscles will grow bigger just by virtue of carrying the weight. Similarly, that left vocal cord will get larger just by virtue of receiving constant impulses from the new nerve. So it will have the effect of permanent vocal cord injections, which is wonderful. Additionally, it is likely to improve his actual vocal quality as well.
The surgery itself should just be a relatively small incision in his neck and should take a few hours. We are expecting that he'll need to stay overnight in the hospital on Wednesday, and hopefully we'll be headed back home by Thursday evening.
So lots going on this week for Bodie. Please pray that all of his procedures go well and put him in the best position possible moving forward! As
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