Well, I had a post drafted yesterday, but never had time to review it after needing to reorganize the freezer (which was not on my list of things to do last night). The night ran away from me at that point, so I abandoned ship. Today I’ll try to recap both days; however, there are not many changes.
David has been off of oxygen since 4 AM yesterday morning. He’s also been receiving IV diuretics in the hopes that he will get more fluid off of him. They did not want to go that route, but their hands were tied. Originally, it was just going to be for 24 hours, but they continued through today. There was some discussion as to perhaps increasing their frequency to every 6 hours as well. In the end, David is still fluid overloaded.
Both days, David has been able to get down to his floor mat for therapy and play time. I’m not sure how much David thinks it’s play though, rather just work. Yesterday, he got a lot of time on the mat, from OT, to playing with daddy, to mommy making him work on tummy time, and then playing at the gym in the evening. I was encouraged yesterday to see him push up with his arms during tummy time. Today, the other kids got involved in playing with David on his mat – both reading books and making music.
One of the fun things about today (Memorial Day), is that both Adam and I had the day off and daycare was closed; however, the hospital was mostly staffed like a typical Monday. This meant that music therapy was on staff, so we ended up having a full family music time, which David just loved! He seemed to enjoy showing his sister and brother some of the fun stuff he gets to do during the week. Anna learned that the songs we sing can include her and Eli’s names (usually she corrects me and just says “no, David!”) David seemed fully engaged in this music time and worked on playing all the instruments while also watching his siblings – this was the highlight of my day. Afterward, he was exhausted and took a great nap.
While he was napping, the kids got to meet Inka – the other facility dog that usually helps out on the other units. Fern had the day off and they had never met Inka before although they know of her from some coloring sheets and we named one of David’s dogs Inka. Inka showed them how she sits pretty and even gave Anna a kiss.
Once David awoke, it was time for that bridle to come out. I have been watching it over the past couple days. trying to figure out if it was causing a pressure sore or not, and it was hard to determine with how close to his nose it was knotted. David seemed to be very disturbed and in pain with any little movement with it too. So last night, I was so grateful when his night nurse came to the same conclusion that it needed to come out and mentioned in several times in her charting and reports so that it would be mentioned today in rounds. I knew I wouldn’t be at rounds so I wanted to make sure Adam brought it up, and he informed me he wouldn’t need to because the night nurse had already started that discussion. Yesterday I promised David I would fight to get it out for him. So when they pulled it, my fears were confirmed in that it had been cutting into his poor nose – which would explain all his bloody boogers too. Now his tube is taped to his face so hopefully he doesn’t dislodge it again, but his nose can now heal and hopefully David is happier and feels better.
After he got the bridle removed, we went for a family wagon ride/scavenger hunt. Yesterday, David went for a wagon ride with just Adam as I had brought the other two home and David was hamming it up for the PICU nurses. Apparently this morning, they were inquiring whether they would see David today for his ride. He’s making so many friends with all the nurses and loves the attention he gets from them. The PICU nurses are not even nurses who care for David, as we have the CVICU nurses, but they all know him from his wagon rides. “Inka” accompanied him on his wagon ride since Fern had the day off (really, his Fern stuffy was missing but was found later). David and his nurse also showed off their matching Snoopy shirts, which they had apparently planned.
After his wagon ride, he pretty much slept the rest of the afternoon. The one time I thought he was going to wake up, he was doing a lot of talking. I piled up a bunch of books to read and planned on cuddling, when respiratory therapy came in for his treatments. Well, David fell asleep during this, and slept the rest of the afternoon. Hopefully he sleeps well tonight. Apparently, he had a restless night last night – but with the bridle removal, maybe he’ll be comfortable and can settle easier. His valium was also increased today as well, since his excess fluid may be contributing to some of his neuro-irritability.
I’m glad that David’s bridle was removed and hope that he is in better comfort🙏🏻
Good morning ☀️ I did miss starting my day with a David update yesterday, glad to hear “all is well” and it was just life (or a freezer) that got in the way. Isn’t music 🎶 a wonderful thing? What a blessing that something so simple brings such joy and can let the whole family join in! Praying for more good days and the hope some more fluid comes off … that can’t be very comfortable for Mr. David either.
So thankful for your update, usually that is included in morning prayers so when you didnt post yesterday, prayers were hopeful all well. So pleased that a household issue was in the forfront.