May 3, 2024

Let’s start with the highlights of the day. First, David had the best wagon ever! He did 4 laps around the unit, and as we were finishing the fourth lap, Fern came trotting up. A sheet was found, and then Fern joined David in the wagon and we did a 5th lap with both of them going for a ride. It was absolutely the cutest thing ever. I’m not sure how Fern managed to hold so still in a very uncomfortable position but she persevered and made it. We had to become a bit creative to accomplish this, David’s incredible nurse had to carry his oxygen tank and maneuver his IV pole, Fern’s mom carried David’s vent bag, and I pulled the wagon. 

After this excitement, David took a good nap. When he awoke, it was time for music therapy. He got to go to the floor mat for this and kind of enjoyed it while being supported in a sitting position. Close to half hour later, he was getting tired and more irritable, so I let him lay on his boppy. Then he LOVED the rest of therapy. He doesn’t like it when he has to work. However, now that the rest of his body could take a break, he started to grip the shakers and actually shook them around. This was the longest he has ever held and shaken them – of course the right was stronger than the left. However, he did so well with it, his music therapist gave him his own shakers so he can practice with them when she’s not there. This made David’s face really light up. 

As music therapy was ending, Eli and Anna arrived. They were really excited to see David’s new shakers. We had a really good evening together. David stayed on the floor where Eli and Anna could better interact with him, and I think he enjoyed that. Anna helped him with his shaker and sang songs with him. Eli played his guitar for him and sang. David had a huge smile for that. Eli gave David a sticker for being brave when he had labs drawn. Anna got to be Dr. Anna and listen to David’s heart. And we all read some stories and sang songs together. 

As for David’s changes for the day – his milrinone was turned off. In an effort to isolate any effects and make sure we are only seeing changes from the absence of milrinone, nothing else was changed. They did add a blood pressure medication since David’s blood pressure will increase without the milrinone. I learned he cannot go back onto the captopril which he was on pre-surgery due to his AKI (Accute Kidney Injury). Since we’ve had issues keeping his BUN and creatinine down when he’s on TPN, we will now stay away from captopril. Currently, those numbers are in a good spot so his kidneys look good, but due to his history, we’ll stay away. 

This morning his lactate was high, and this evening had gone up even higher. David was definitely calm this evening (agitation can cause it to be increased), and it drew fine (a difficult draw can also cause an increase). This left the only other reason for it to increase is decreased cardiac output from the effects of no milrinone. It was decided to watch the trend, and a draw later this evening was back down to normal. It will continued to be monitored at this point. If it continues to trend high, milrinone may need to be restarted.

To minimize changes, David also remained on his high flow. His work of breathing has improved, but we might as well support him while we’re focusing on the milrinone. He did go onto low-flow for his walk. We have a big goal for Sunday, which is to try to get David outside. Hopefully David’s lab continue to show good results. Getting off of milrinone is a big step, but there’s no better place to try it than in the ICU under watchful eyes.