Day 804 - Fever After Therapy 🤒, Expensive Toys & Laundry 🧺
Tuesday, March 14th, 2023
We had PT in the morning and James was taking off the vent to be put on his HME. He did well with it. His therapist brought these little suction cups that we were using as incentives for James to reach. He scooted around on the floor and was just moving things out of his way. He moved the trash can, the oxygen concentrator, the laundry basket, the diaper pail, and even an oxygen tank (yes, we're watching him)! James moved these things out of his way because he realized that he could get to the window ledge. Mom raised up the blinds, so he could see outside. We put the suction cups on the window and got him to stand up a few times to reach them. As soon as he realizes the game, that we are just trying to get him to stand up he will become uninterested in whatever it is you have in front of him. While we were in PT James received a package from Juju! It was for St Patrick's Day! Two new books, several adorable outfits, and a night eyebmask to replace the bean bag he puts on his face at night. 🌙
Mom ended up putting James back on the ventilator so that he would have the humidification he needed. We were so suctioning him pretty frequently and he had a lot of it coming out of his nose. It felt like we could suction his nose all day and it would never stop coming out. That can't feel very good. We aren't allowed to give him an antihistamine to dry things up because it's viral and supposedly it won't help and could consequently cause a mucus plug in his trach.
Since James was on the ventilator there wasn't much he could do as far as moving around so Mom took this opportunity to hold him. He also had a fever and Mom give him some Motrin. The fever comes and goes with RSV. While Mom held him in the rocking chair James went through the medical supplies in the drawers nearby just like a curious toddler. His new favorite thing are the passy muir valves. These little pieces of purple plastic run about $150 each. 😂 James just loves the fact that a bunch of them inside the container make a lot of noise when he shakes it. They also fit on the tips of his fingers. We don't really use these anymore since James was capped, but since you never know 100% how things will go we are still keeping them around.
After trach care Mom put him in one of his new Mickey Mouse outfits from Juju. Unfortunately his medport opened up on his feeding tube and "fed the bed". His outfit was soaked and the sheets were soaked. This is 100% the reason why we have washable chucks underneath each sheet. It makes it way more convenient to just pull off a sheet and a chuck without needing to put one back on. Of course this time we were already at the bottom one because Mom has been changing the sheets about three times a day. These medports opening are so stressful! It's really crazy that the only solution is to use tape. And then every time you need to get into the medport you need to remove the sticky tape. It is a mess either way! So we changed James and put him in his other new Mickey outfit. Well that didn't last long either. Possibly could be from the bottom of the onesie jumper being too tight and pulling on the tubing at the bottom. Either way, time for more laundry! 🧺
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