Well here we are. Another day, same results. Before we get there though, let’s talk about the highlights. David only had 1 change that came out of rounds this morning – reduce his milrinone again and see what he does. It has a long half-life, so effects won’t be noticed right away – and with how fussy he was today, probably not until this evening or overnight.
David had a special therapy session today – he worked out with his godmother Fern and her mom. Fern laid ever so patiently, while David did his tummy time on her. Apparently, it didn’t matter though – he still hated his tummy time, but it was a very special moment. Between times on his tummy, he got to sit near her and feel her soft fur. After it was over, Adam got in a tug session with Fern to allow her a chance to be a puppy.
David also played Star Wars bingo, and won a prize! After this he went for a wagon ride. He made another new record and went 4 laps around the unit! This time he brought a steering wheel with so he could “drive” his wagon. Afterwards, he and I got some cuddles in. Otherwise, David was kind of fussy today. A volunteer tried cuddling with him at one point, and it worked well until he coughed. He hates coughing, and every time he coughs, he has a very hard time calming back down.
David also had a massive blowout today. Things are very mucus-y, and it’s unknown why there is so much mucus. Now for the step back – once again, David was breathing fast by this afternoon, and so once again he’s back onto high-flow after 2 days off of it. He had a few episodes where he vageled and bradyed as well today (bear downs and then drops his heart rate). He does recover, but not as quickly as he has in the past. It’s also been a while since he has pulled those tricks. However, when he’s been de-sating, he has recovered very quickly without needing additional air.
The thought at the moment is that David needs additional respiratory support because his fluid levels are up. They did increase his diuretics tonight – including the one that makes him lose all his electrolytes but works really well for him, so they will watch those closely. David also got another X-ray to check on his lungs which showed mild fluid, so hopefully the diuretics help.
One of his PICC lines is having an issue tonight as well, so vascular is going to come by and place an IV. However, vascular may not have staff tonight, so he may get more than 1 poke as they try to find his vein. David is not going to like it, but it’s best for him to keep receiving all his meds and lipids without a disruption while they work to get the line opened up with the “clot-buster”. It is a little odd that there’s a clot since he has something running through both of his lines at all time, but maybe there wasn’t enough being pushed through.
I guess it’s hard to say where David is heading. He makes progress in some ways, and takes steps back in other ways. From conversations, it sounds like he has a cardiac cath on the horizon, and then they will be able to see what’s happening with his heart more clearly. From there they will likely be able to come up with ideas for him.
There seems to be a few unknowns going on and with changes throughout the day, I can imagine that life must get a bit hectic…..I hope that you and Adam are taking some time out here and there to just breathe; be; and listen to silence. You are such fantastic parents and are a shining example to countless. Sleep well Tilly Family 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
So, I had a dream last night … there was a big community party of some sort somewhere and you guys were all there – with David!! I got to hold him!! I am so praying this dream is true 💕
I can’t wait for the day he is off all the drugs and respiratory helpers. When we see him sitting up and smiling and playing with Eli and Anna. That will be the day we throw a great celebratory party and he can finally play and have a baby life like he deserves. Love you Tillys 😍