March 27, 2024

Another day heading in the right direction. It makes Adam and I laugh when they introduce David in rounds now. Usually they give a short synopsis on the diagnosis and procedures so far so that everyone is on the same page, but lately they have just taken to “Now we have David Tilly our 4 month old, who you are all familiar with, who most recently had a central shunt placed”. Everyone knows David. They also know that David does things at his own pace and will not be persuaded to do things any faster and will even take a step back rather than go forward at a faster pace. David is also a tricky one to treat, and there is always discussion about what may or may not work best for him. Today it was about medications – especially around the dopamine started yesterday for his kidneys. It doesn’t seem to have done anything – so do they increase the dosage, just stop it, or leave it as is for another day? Ultimately, they left it alone for one more day and if there is still no improvement, they will stop it. At this point, they seem to try everything they can think of since his body doesn’t always respond. 

This morning’s x-ray showed that his right upper lung lobe was more open from yesterday. This means that the plan has been working, so today they decided to continue with the plan. However, instead of 4 hours SCUBA followed by 2 hours RAM it was switched to 3 hours SCUBA then 3 hours RAM. I did confirm that the RAM is just the BiPAP nasal cannula. It is kind of funny, throughout the day everyone kept saying his lungs sounded better when he was off SCUBA rather than on it. You would think it would be opposite since SCUBA offers him more support. 

There were not very many other changes today. They stopped his diuretic to see how well his body responded to that with the caveat that if he didn’t pee for 6 hours, it could be given on demand (rather than the continuous drip he has been on). This evening he was still peeing, but not the amount that he had been, so they may still give him a dose. They also weaned some of the medication he receives to help him with withdrawal. He can still receive doses on-demand, but since he hadn’t needed any additional doses, why not try to cut back on the amount he’s currently getting. Finally, the team also updated his dosing weight for all his medications to be something that more accurately reflects his true weight. It hadn’t been updated since his surgery. Since he was carrying a lot of extra fluid, it was hard to know what his true weight should be, but he’s at a good spot to get an accurate dry weight. 

OT came by today, and worked with him, and David really did a good job. He didn’t always like the stretches, but it’s good for him. They had me get him into a seated position so they could see which muscles he is currently using  to know what else they should work on. They also brought a bunch of new toys to try to get him to reach for things or grip onto, and at the end showed him how he can bring his hands to his mouth. He found that very soothing. As they were getting ready to leave, he was showing them what he learned – he started grabbing all the tubes on his face and started to move them! The little stinker always figures out things and uses them to his advantage. He now is sporting a sock on his hand to try to stop him from grabbing the tubes and dislodging them. 

Speech came by after OT. It is going to take quite a bit of effort to get him sucking again it seems, but they said to just keep working with him as he tolerates it. Otherwise, I got another cuddle session in with David today which is always so nice, and we made sure Adam got one as well.