Today marks 40 days and 40 nights spent in the hospital. At the risk of sounding blasphemous, let's just say I have a newfound appreciation for Jesus during his time of fasting and temptation.
Turns out, 40 days is a looooong time.
I should note that, in the world of heart transplants, being inpatient 40 days is nothing. I mean, really, it's a drop in the bucket considering how long most recipients wait. That fact is not lost on me. Nonetheless, because all of this was so unexpected, 40 days is feeling very long at the moment.
We've done our best to try and keep Bodie entertained...
So we're doing our best.
But we're tired.
And very, very over being in the hospital.
The good news is that the end is getting closer!!!
Bodie had a very busy cath on Friday, and for the most part, the results were great - thank you all so much for your prayers!
Heart Pressure Check. They checked the pressures in his heart, which were a little elevated since his cath 2 weeks ago. But because his echoes have been consistently good, they weren't too concerned and just want to titrate his diuretics up a bit to get him a little more "dried out." He's already on Lasix 3 times a day, so they also added Diuril to his med regime.
Right Heart Biopsy. They also did a biopsy on a tiny bit of tissue in his right ventricle, which showed Level 1B rejection. I'm still learning the new language of the post transplant world, but the team explained that ideally rejection is at 0 (no rejection whatsoever) or 1A (mild focused spots of immune cells which aren't rejecting the heart tissue - essentially, coexisting with the heart, but not attacking it). 1B (mild diffused spots of immune cells) isn't bad per se, but not as ideal as 0 or 1A. But they don't treat it, just watch it to make sure it stays in the 1 category (a lot of post transplant recipients bounce around between 0 and 1B and all are considered ok) as opposed to trending downward into Level 2 or 3 rejection. So, for now, no changes to his meds and we hope it looks better on his next biopsy.
Staple removal. They removed the remaining staples (on his central incision), so all of his sutures are now out and healing nicely!
NG Tube Swap out. He had been complaining of a lot of discomfort with his NG tube (the feeding tube in his nose). Unfortunately, until his vocal cords have healed, the NG tube is here to stay for feeding and meds. But the Psych team let us know that he might be able to downsize to a smaller NG tube. As it turns out, he could safely go down one size. So we let him choose whether he wanted it done earlier this week when he was awake, or just have it done during the cath, while he was asleep. He opted for the latter. Smart boy. ;-) He seems much more comfortable with the smaller tube.
Vocal cord injection. They did injections on both the left and the right vocal cords during the cath. They injected more than they anticipated going in, so we're all hopeful it'll make a difference in his swallowing abilities! We're already hearing a little more sound when he speaks, so we definitely have reason for that hope. They'll be doing a repeat swallow study tomorrow or Tuesday, and we are fervently hoping for news that we can increase his feeds by mouth as a result!
Discharge planning. The Big D word has finally been spoken, and discharge planning has begun in earnest! We've done transplant training and pharmacy med training, home meds have been ordered and I've started getting trained on the actual administration of his home meds. We're still waiting for the home health care team to provide the feeding pump and train me on it, but hopefully that will happen Monday or Tuesday. The swallow study will be done to confirm our feeding plan going home. And we're still titrating diuretics up and down, so need a couple more days to get that to a happy place. ID has confirmed that once everything else is done, we can pull the PICC line and discontinue his antibiotics, even if that ends up being a few days earlier than planned. Once that's all done, we should be good to spring this joint! Hopefully on Wednesday!
As we head into this next week in the hospital, we covet your continued prayers:
- Healing for Bodie's vocal cords. Please please pray that this next swallow study shows that Bodie is able to effectively protect his airway when he swallows! The poor kid is so tired of not getting to eat and is desperate to eat again. Please please pray that the vocal cord injections were effective! Please also pray for him to be able to make more sound with his vocal cords. He can whisper and we can understand him, but it's still hard for him to make much noise to communicate.
- Cooperative insurance. Please pray that our insurance quickly approves all of the home meds and NG supplies so that discharge isn't held up.
- Supportive donors. We are overwhelmed with the financial support we've already received and cannot thank you all enough for the generosity! Please pray the generosity continues and others will feel led to support us as well. We recently learned that the nonprofit who was going to be funding our post transplant housing will not have as much funding available as they had hoped. Thankfully, they'll still be funding some of our hotel stay post hospital discharge, but we will be paying for a larger portion than we anticipated. We should be finding out tomorrow exactly how much that will be. We feel it's worth the expense to keep Bodie away from germs and in a safe, private environment, but it means our expenses will be higher than anticipated. Any extra donations go a long way toward helping us with this! (And please remember that all donations are tax deductible, and many employers can match them!). Please share Bodie's COTA page and Bodie's story to help us with this!!!
- Safe travel for Dusk. Dusk will be flying up here Wednesday, to hopefully help us get settled into our post transplant housing. Please pray he is able to get his work out of the way before he leaves, and the animals will be well taken care of while he's up here.
- Discharge as planned. This is not our first time at the rodeo. We know not to count on discharge until we're walking out of the building. So I'm trying to manage expectations and not get our hopes up too much about discharge. But please pray that I'm pleasantly surprised and everything goes as planned! Bodie still fatigues easily, but really is starting to feel better. As he's feeling better, he's getting more and more antsy to get out of the hospital and get on with his summer. The hospital is nowhere for any kid to spend a long time, and an active 14 year old boy is no exception to that rule. Please pray we can get out of here as planned this week!
- Our donor family. As much as I complain about being stuck in the hospital, I am reminded that Bodie's honor family has it so much harder right now, and I'm certain would give anything to be stuck in the hospital, if only it meant their loved one was still here. Every time you think of Bodie and pray for him, please, please also pray for the family of his donor. Because of their selflessness and courage, Bodie has been given a new chance at life. A chance he never would have had otherwise. And for that, we are profoundly grateful and tied to this family we don't even know.
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