Another day of discomfort for David. At least the morning was. I was hoping that being NPO and then getting 2ml of straight milk with no fortification would help. However, this morning, he was just as uncomfortable as yesterday. I don’t think even his ativan helped. However, I think it was because his potassium supplement was mixed with his milk, so for 8 hours from 6 AM – 2 PM, he was receiving that supplement, and potassium is really hard on the gut. Tonight it should be mixed in with his TPN so it can be administered via IV. Hopefully we have a happier boy tomorrow and he’ll finally have some gut relief.
Around 1:30, David made a new friend from PT as he now starts his PT journey. It was a trifecta of therapy – he had a combined PT, OT, and music therapy session. He did extremely well. OT said he did even better than yesterday. He whined his way through it, but he was never super upset. PT had him do a lot of things just so they could have a baseline of where he’s at. OT needs to update his goals (probably because he’s been there for so long). David showed PT how he likes intense vestibular input (aggressive bouncing), and butt pats. It sounds like PT will schedule to see him 3 times per week, and OT has him on the schedule for 5 days a week, so whichever days David doesn’t have OT he’ll have PT and one day a week he’ll have a combined session. This will be good for him to get that exercise every day because he gets stiff when he misses a session.
After David spent the morning super fussy, I tried some cuddles with him. He was not a fan until he was basically just sitting in my lap. Then he fell asleep. It was nice that he got some relief. We did that until therapy arrived. Then he took a little nap in his crib since he was exhausted from exercising. That lasted until respiratory arrived with his nebs. Afterwards, we ended up doing the same sitting cuddle and he fell asleep again. I guess I found what he likes, at least for today.
This evening David had an EKG, and Eli arrived in the room as they were starting, so he got to “help”. Anna played some of her favorite songs for David and showed him the actions or dances for the music, or played the shakers with the music.
Other changes today included stopping the digoxin. It has more risks than benefits at this point with being NPO. David’s clonidine was also changed to a patch. This will keep one more drug out of his gut, but the patch takes a couple days to be effective, so the oral med will be slowly weaned over a few days as the patch gets absorbed more. We were reminded (I may have been the only one who knew), that David’s cath on Monday may not resolve his bloody stools, but it will eliminate that as a cause if they do continue. They also discontinued the diuretic metolazone that causes David to drop all his electrolytes.
We saw his surgeon this evening and learned a bit more about David’s physiology. We were a little confused on how the echo was read yesterday about his old sano shunt and we asked several different people and got conflicting answers, so when his surgeon stopped by to talk about the cath, we asked him since we knew he would know. Basically, the stent that was placed in his sano shunt is still in his heart and the shunt was cut after it. He also explained the formulas for David’s central shunt and explained how it is placed and why. He’s a little concerned about the contrast needed for the cath next week due to David’s kidney injury. Since David will be NPO and on TPN, his kidneys will likely not be in a great spot. They are going to try to get as much information as they can about his heart while in there to avoid too much contrast. It’s also hopeful to have his full brain MRI that day.
Finally, the provider from PACCT stopped by this afternoon to see how David was doing. There was not much change from yesterday at that point, but I did say that I think it may be due to the potassium in his feeds for the last 8 hours. She said she had been talking to the GI doctors and GI said sometimes the gaba medication can cause watery stools, so she was going to meet with the team to see about going back to the smaller gaba dosage he was on a few days ago and see if that helps.
A busy day again. It was great that Eli was there to assist👍🏻 and that Anna could provide the entertainment for David👍🏻
I certainly hope and pray that they find what is causing David’s tummy issues and get that results soon. My solution for when my heartburn and tummy start acting up is Kwik Trip ice cream! Actually I think that anything from Kwik Trip solves every ailment!
Oh my goodness, Jess, so much going on and to keep track of! I am praying for you this morning.
Glad David likes some of his therapy and that he’s getting exercise. Praying for David to feel more comfortable, and that the causes of his various issues can be discovered without causing more troubles down the line. Sounds like a lot of waiting, and you sure show a lot of patience! ❤️ Meanwhile how good that you all (David’s family) can be such a bright spot in his days, while his medical team balances so many elements in his care.
Like I have thought in the past. You two are probably going to test out and become nurses after this. I can’t help but believe the doctors are impressed as I by the wealth of knowledge you have retained and understand about David’s treatments. I hope he gets some relief from the tummy ache. He must get just exhausted with the constant changes. He seems to be very good natured to put up and only whine a bit at times. I don’t think I would do as well as he does. Love and prayers 🙏 ❤️