May 9, 2024

David had a fairly good day. Not the best, but still better than some that he’s had lately. I had one goal for David today – to make it to the Dog Pawty in the Endzone with the facility dogs Fern and Inka. However, as fate would have it, David was taking a good nap during it. I was not about to wake him since he’s had trouble resting lately, so we missed it. 

In preparation for his cath on Monday, David had an ultrasound this morning to check his points of access. David was not a fan this – even though they opted to not check near his neck but just his groin. He screamed and screamed. So much, that the ultrasound tech had trouble getting the images needed. Fern and her mom from child family life had come in to try to comfort him, but he just refused to calm down. I cuddled with Fern initially in the back, but eventually her mom tried holding her up for David to pet and see – David of course refused to open his eyes. We then brought over a chair for Fern to sit on near his bed. After they got all the pictures they needed, Fern, her mom, and David all sat in the chair and cuddled together. This finally brought David some peace and he fell asleep. In the end, the ultrasound showed what we already knew, his right femoral arteries are occluded, but they are open on his left side, and the veins are open on both sides. 

Before ultrasound, David was initially agitated, as neither of his PICC lines was allowing a blood draw. This seems to happen quite frequently when they’ve been “hep locked”. All the fuss to try to get his lab drawn was what initially set him off, so he was already upset by the time ultrasound arrived. Before that fiasco though, David was visited by PT and music therapy together. He did really well, and improved upon yesterday. Each day he gets a little stronger. The next time he has PT, they want us to try getting David into a position by ourselves because it’s a good position for him and works so many different things for him. PT also decided that David’s whining cry is less of a cry but more the mechanism David uses to calm himself. 

Speech stopped by briefly. I think they have pretty much given up on David and eating orally. I’ll be interested to see if David is more interested in his pacifier once his gut starts feeling better and he’s not on any oxygen flow. However, they didn’t even work with him today. They just wanted to go over an initial evaluation so that they can start working with him on other more language type skills and games in the future. She said they often combine these speech lessons with another therapy as well. 

This afternoon, David “played” Bingo. Well, he won. But he was not so interested in actually watching Bingo, and preferred just to listen to Taylor’s new music. He found that calming, in combination with cuddles. He has really started to like cuddles where he sits on his boppy in our laps, and then with some butt pats falls asleep. 

Brenda from clinic stopped by this afternoon as well. It was nice having a familiar face. Maybe it was the motivation David needed to want to visit in clinic again. Or maybe he just wants them all to come to him. David had a lot to tell her. She also brought by a new duck with a scar like David’s for him to cuddle.

Late this afternoon, the patient David was paired with was discharged, so then David got his nurse all to himself. This allowed him to go on a wagon ride. We got Eli and Anna’s wagon to follow David’s again. David brought his Fern, new duck, and octopus with him, and Anna brought David’s Inka puppy and Eli brought David’s Socks puppy from Bluey with for our excursion. I was just going to do laps on the unit, but Eli wanted to go to the lobby, so we went down there after one lap.

The furthest elevator opened to bring us down, and Eli jumped inside, and before we could get inside, the doors closed and Eli disappeared. There are no stairs available for patients and we all looked at each other as we hear the elevator say “Lobby”. We were wondering what we were going to do and where we will find the kid. So we’re waiting for the next elevator, when Eli’s elevator comes back up, opens up, and there he is! He claims Socks was very naughty and pushed the Lobby button and after getting to the lobby, he pressed the 3rd floor button to come back. I was just so relieved he didn’t get off in the lobby and take off, and that his elevator came back to us. Tonight in bed, he told me that next time he wants to take a different stuffy and hopefully they are not as naughty as Socks. This kid! 

Anyway, David loved his wagon ride. We went down to the lobby, and then over to the Endzone. His nurse had never been to the Endzone, and neither had David, so we took them on a tour of it, before leaving Eli and Anna and Adam down there to play and heading back upstairs. He started to fall asleep on the way back, and then we took the long way around the unit back to his room. By the time we got back, he was asleep, but not enough to not have some cries after getting back into bed. He hates it when his rides are over. 

This evening David got more cuddles. Earlier today, they took his high flow off, and tried to put it back on him this evening. Well, I wanted it back on him since the last two times he’s had his high flow turned off, it only lasted two days. I was hoping that wearing it during night would help give him some extra support as he builds his strength. However, he was oversaturating, so it’s off again for now. David also got to have one of his nebs reduced from 3 times daily to twice daily. This neb in particular causes him to cough, which is his least favorite thing, so they are giving him a break from it. His other treatments were left at 3 times daily. 

David also got his feeds upped to 5 ml per hour. He had one stool with blood flecks in it, but not nearly as much as a couple days ago.  Overall, today he was much happier, and easier to console. I think he really likes the sitting cuddles in the chair, and he seems to calm fairly quickly with them. Hopefully, each day we can continue to have more and more periods of happiness.