Busy day for our little guy. For the third day in a row, David needed his art line dressing changed. His stools are super liquidy, which is a sign of withdrawal, and they keep finding a way onto the dressing. He is off all his IV sedation drips now, and you can definitely tell he’s feeling it. One week ago, he was on fairly high does of all three meds, and now he has none. He is receiving some different medications to combat the withdrawal, and they do calm him down which is good.
The first change of the day was to switch David over from CPAP to BiPAP. David’s lung x-ray this morning looked a little more cloudy, and they sounded as if he wasn’t moving air as well. His team was noticing his breaths seemed more shallow and his coloring was looking more dusky. Even though the last two days had gone really well, there is some thought that he may be getting tired with this added work of breathing. They also do not trust David, as well they should not, and they know it is better to act than to react. So they decided to give him more support on the BiPAP for at least the next day or so. It’s still quite a big step from intubation.
Someone from the surgeon’s team found time this morning to perform David’s wound vac change. There was a little time before a surgery, otherwise he would have needed to wait until after the surgery. We were allowed to stay in the room while they did this, and they cranked up David’s Eras Tour music since his nurse chose that for him to “watch” today. I think this is David’s fourth time listening to it now. During this procedure, all the remaining stitches in David’s chest were removed, and they also removed his V-wires (ventricular) since they were not being used. That made us feel better than removing his A-wires. David remains unplugged from the pacer box, but ready to be plugged in at a moment’s notice if he does something that warrants it. His nurse did show us some photos of his incision site – the top part is healing very nicely, but it’s still going to be a couple more weeks yet before the lower part fully closes. Fern the facility dog did come in for a brief moment while they were doing the procedure. Eli and Anna also saw Fern as she was leaving for the day – they said she was wearing a coat and some booties and looking absolutely adorable.
One thing that is being monitored now are David’s kidneys. One of his labs measures his kidney function, and that number has been rising outside of the acceptable range causing some concern. That and his lack of peeing. The prevailing thought is that his body is so dry and needs more fluid. However, adding fluid is a tricky and difficult balancing act. He needs more fluid for his heart to function better and his kidneys, but too much fluid makes it difficult on his lungs. They are slowly trying to increase his fluids, and also reducing his diuretics. The hope is tomorrow that those lab results are in a much better place. However, in the meantime, they did ask for an ultrasound of the kidneys today. The result was some arterial stenosis in one of the kidneys. David had a similar ultrasound at the beginning of the month, where it showed the same thing but in the other kidney. So the nephrologist is a little confused, and also thinks these results are due to lack of fluid. For now, we’ll try to get some fluid into him, check more labs and repeat the ultrasound tomorrow. If the ultrasound tomorrow shows the same thing, then David will need a CT scan. We’re really hoping getting some more fluid into his system will take that issue off of his plate.
Other things of note: his nurse found him a new toy to look at in the crib. It’s a cute little aquarium, and she made a good point that it is too bad he didn’t have it last week when he was on SCUBA. Hopefully between that and his mobile, he can find things to entertain him. At one point, David did spike a fever so cultures were sent. It seems unlikely he has anything with all the antibiotics he’s currently taking for pneumatosis, but you can’t be too cautious. This afternoon, I also got some snuggle time with him after he finished his OT. He’s not a fan of being stretched out with OT, and then he seemed to be going through some withdrawal when he first came to my arms. However, after receiving some meds he finally settled down and we got a good cuddle session in. Around the time he woke up (and he woke up mad), the other kids arrived so we had some dinner before I ended up bringing them home.
Sounds like it was a very full day. David has certainly made a lot of wonderful friends while at the hospital and Eli and Anna are gaining a great education with their involvement at the hospital ❤️❤️❤️ I’m praying for balance for David… so many things that depend upon so many other things that are important to his well-being. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
That aquarium is great, I am sure he will enjoy it. I pray for the medical staff as they work so hard to meet all David’s needs – those current and those anticipated.
Wonderful that you can hold David daily. Love seeing him surrounded by familiar things and sounds and people as he gets used to being awake and being weaned from so many medical helps. Fun that he has new toys too! Praying for the care team balancing all components of David’s care, and for everyone driving back and forth there today.
Continued prayers, positive thoughts, and love being sent.
The training the interns are getting with David has to be priceless. He is teaching them to really listen and pay attention to him. He may be non verbal as he can’t speak yet. But I bet his nurses, doctors and you two are very good at reading his body language. I believe that is very important as when I was a vet tech the animals couldn’t talk either. But I got pretty good at their body language and trying to figure out the next move in their care. Prayers and kisses to all.
Love the pictures of David!! It helps us love him more and be part of the journey. We are continuing to pray for David and all of you. May God continue to give you strength and hope as you walk out Davids healing process.