David got moved to a new room this evening. Since February 14th, he has called 3122 home, but as of tonight, he gets to call 3124 home. When he was first born, 3124 was his room, and he was on the fast path out of there. Perhaps, this change of scenery is what he needs and he’ll return to the fast path. Or maybe he still likes the scenic route – it’s all up to David. I have a good feeling that we could be moving off the unit before the end of the week, but we’ll see.
Today marked 24 hours off of milrinone for Mr. David. So far he is doing great! It’s still a very tenuous period for him, but today they did increase his fortification on his feeds to challenge him slightly. He’s now up to 24 kcal. This occurred this afternoon, so we’ll continue to monitor how he handles this. He also had his high-flow turned down from 4 liters. Initially he was turned to 2 liters, but after a while, they settled on 3 since after a couple hours he was starting to run on the low end of his range. By this evening, he’s back up to 4 liters. I’m not sure if David will be able to maintain being off respiratory support, but we will see. So far his record is 2 days off before needing help for either desating or tachypnea. Perhaps he needs more support overnight and during naps to build up his strength. Slow and steady is the name of David’s game.
David was fairly sleepy today, but he did have some moments of being awake and moving and grooving with his new shakers. I also got him some shakers for his wrists and found a sock shaker at home, and he really seemed to enjoy them. However, he also seems to have lots of symptoms of withdrawal, so he did get a few PRNs to help with that. With coming off milrinone, the last thing they need is to have withdrawal symptoms interfere with that, so they try to keep up on that.
The highlight of David’s day was his wagon ride, and today for the first time, he went outside!!! He saw trees with leaves for the first time and looked at the playground, saw the bright sun, and felt the warm breeze blow on his face. His little Fern accompanied him, and he moved his hand to hold her – it was very adorable. When I heard about going outside, I went and fetched our wagon from our car, so that Eli and Anna could go for a ride too. It was a caravan. We did two loops outside before going back inside. Once inside, Eli wanted to help pull David’s wagon, and David got a huge smile on his face watching Eli help pull. We’re looking forward to more fun outings. Now that David is needing less and less things, it’s hopeful that tomorrow we could perhaps leave his IV pole behind.
Tonight, David is 1:1 with his nurse again. He actually started that this afternoon when the kiddo he was paired with went home. It turns out he was paired with another HLHS baby. They are similar, but also very different. Three other cardiac kids in his hall went upstairs (including our transplant friend), leaving just David and one other baby in his hall – I’m not sure about the other side of the unit. However, with the 4 empty rooms, David gets one on one attention again. This probably makes him very happy. Hopefully he sleeps well in his new room, and is ready for a day of more fun adventures tomorrow.
Congratulations on your new room David👍🏻 I’m sure that you will enjoy the change of scenery and will have fun showing people new things in your room!
Such good new hoping it keep going
What a beautiful day for all of you! I am so happy to hear about going outside and the double wagon adventure, Thank you for sharing. My prayers continue for all of you.
How wonderful to be able to go outside! And extra fun with big brother and sister to come with in their own wagon. My prayers continue for little steps forward for David and you all.
It’s so wonderful how Eli and Anna have bonded with David. It’s like they know treating him like a normal baby for the most part is good to socialize him. Love and prayers Tilly family!