Apparently David knows quite a bit about superheroes because he won trivia today. All while being transported to IR and having a PICC line placed! Good thing his mom accompanied him on this trip, because she knows hardly anything about superheroes. David was brought down by someone from respiratory, his nurse, his NP and his mom. We were discussing superheroes before David was brought into his room for the procedure, and we learned that the male from respiratory knows a lot about superheroes, and the rest of us know nothing and don’t really watch movies because we just fall asleep. He even said he named his dogs Rocket and Groot and we were the only ones who didn’t react. It was nice to be in the company of others like myself.
Thursday (a day I usually celebrate as pi-day), is Superhero Day at the hospital, so we’ve been preparing for that. David’s has a decal on his door, and there are banners and decorations around the unit gearing up for the day. After dinner, Eli and Anna went to the Endzone where they created their own Captain America shields. They did a marvelous job.
We had lunch provided today by the 3M Open – something to do with golf. They had little gift bags, and told us to each take one, so I gave one to each Eli and Anna this evening and told them they were gifts from David. They got a soft golf ball, some tattoos, small coloring sheets, and a water bottle. They were really excited for the golf water cup. We also got cake pops with lunch, which were golf themed. Either we have misunderstood what cake pops are, or they were not cake – but they were delicious!
As for David, they didn’t want to make a lot of changes on him until after he received his PICC line. They were not ready for him until 1 and it took some time to get him down there, and then he didn’t return back to the room until close to 3. They gave him some sedation before they left the room and another hit on the walk down because David was still wide awake and wiggling. Yesterday, he apparently needed A LOT of sedation to get through the chest non-closure procedure. He has apparently built up quite a tolerance to those meds. However, after David got into the IR room, they gave him one more does of all his sedation meds and then he was fine. Since he was still heavily sedated when he returned (they were surprised it hadn’t worn off yet), they used that opportunity to remove his RA line since all of those lines will now move to his PICC line.
After all of this, they resumed his feeds, but now with a higher fortification (up to 24 kcal). They were starting with half the feed initially to see how he handled it and should be back to the full feed now. Tonight, they are also going to start David on some delirium medication and some melatonin. Many kids get their sleep/wake cycles all messed up while being in the hospital for so long. They are hoping that these medications will help David get a lot of good rest at night and then be awake (and happy about it) more during the day. They also did one small vent adjustment this afternoon (went down on his PEEP which keeps his lungs inflated). This was tried last week and David said no, but his lungs look better so they tried again today.
It sounds like David is having a party in his room tonight as they don’t understand why his body is acting a certain way on his pacer, but with it off, everything is fine (with a lower heart rate). They put him on his pacer to travel, and then left if on while he was cold and sedated. However, this caused his blood pressure to be lower and same with his oxygen saturations. Turning it off, his blood pressure went up and so did his oxygen levels, and his heart rate went back down to what it normally is. So the question is, how can they pace him faster and maintain a decent blood pressure. David may also be giving them other things to discuss as well. I guess he heard they wanted a restful night for him, and will do the opposite.
Hopefully tomorrow brings less procedures and allows David to focus on weaning from some of his medications, working on his pressure support trials, and happy periods of being awake.
Prayers for a happy balance of procedures and happiness throughout the night and tomorrow. Thank you God for all of David’s care and for your love for his family and care team🙏🏻❤️🙏🏻
Hoping for some happy moments! Grateful that the hospital provides such supportive services for the whole family. I agree I prefer PI(e) day! Sending love and support to all of you and the care team.
Wow! Look at those shields! I’m glad the PICC placement went well, that should be very helpful going forward. My prayers for care and support continue.
Good to hear more positive things with David’s progress. Praying for continued results. Eli and Anna seem to have a great time at the hospital. Having them there have got to be great stress relievers. Give them all kisses for me and I’ll keep a open line with God for the whole family.