No big changes for David today – in fact everything is the same as yesterday. His feeds are still increasing at 1 ml every 6 hours, and his medications that help with his withdrawal continue their auto-wean. Otherwise, he’s receiving the same respiratory support he received yesterday. Overall, David seemed happier today, but still slept a lot. He slept through OT coming to visit, so they decided to try tomorrow rather than waking him. I wasn’t sure if he was playing opossum or not, but they tried saying his name and talking to him, and he did not flinch, so he must have been out.
David got some good cuddle sessions in today though. I got a period with him this morning. It’s good that he needed to go back into the crib, because he had apparently leaked through his diaper. Luckily, it was just on his blankets and I was unscathed. Adam then got a cuddle session with him this afternoon. The trickiest part with David at the moment is making sure his fingers behave themselves and don’t pull on his tubes. He hates his nasal cannula (but he also hates SCUBA). His fingers attempt to pull things out any chance they get, so he needs to be watched closely when his hand, especially his right hand, is free.
Eli and Anna had a busy morning with gymnastics and skating lessons. They then played at the McDonald’s play place that is near Eli’s skating lessons over lunch. Finally, this afternoon they came to the hospital for a visit. I was going to take them outside to play at the playground, but on the way we stopped to look at the staff photos in the hallway. Well, I mentioned that I could hear David crying and Anna immediately grew very concerned and made us turn back around to go to his room so she could give him some comfort pats. She’s an amazing big sister. After she was satisfied David was in a good place we were able to go outside. We played ball in sports court area for a bit until Eli “scraped” his knee and “couldn’t” walk. Good thing a breeze was like an ice pack, because he was able to move again when we finished there. Afterwards, we played at the playground. This warm weather is sure great! Also, I really enjoyed the extended time to play with them. When it was time to go inside for some dinner, Eli and Anna both found a dandelion for David, and when we got to his room, we found David watching the Eras Tour again. Overall, I think today was a nice relaxing day for David. We can’t move too fast for him, so hopefully this is exactly what he needed.
Oh how I know the unbearable pain of a scraped knee and not being able to walk ( 🤭🤭🤭) I’m so glad that Eli can walk again👍🏻 Anna sure did a great job at being a big sister ….. So sweet👍🏻 Sounds like the oldest siblings had a really big day today! I’m yawning thinking about all that they did🥱🥱 I’m so happy that Mommy and Daddy got cuddle time with David, I’m sure David loves that so very much 💙 Maybe David could use some other kind of fidgety thing that he can fidget with instead of his cannula. I would sure hate to have that on me all the time too! David, I’m glad you had a pretty good day today and you got to spend time with your entire family…… that’s the BEST💜 God is watching over you carefully, but you know that already don’t you🤫. Blessings to you and your family and your fantastic team of care providers🙏🏻
We usually give him his octopus to hold onto, but he’s been learning other tricks to get it out too – like moving his head back and forth until the tape gives out, or pawing at it with a sock covered hand.
You have a very determined little David don’t you! Maybe he is trying to share his cannula with his octopus!
Jessica Tilly — 4/6/24
We usually give him his octopus to hold onto, but he’s been learning other tricks to get it out too – like moving his head back and forth until the tape gives out, or pawing at it with a sock covered hand.
Thank you for sharing your day … sometimes, staying the same is a very good thing. I pray for continued cuddles!