1.4.18 Appt Day

Walter, Aimee, and I went in for some appointments today. We started in Bellevue Sleep Clinic. Aimee has been having big desats 5-6 times each night. She recently had a change in pressure of her bipap and we are hoping another tweek will resolve the issue. Some kids with low tone are not able to tolerate higher pressures apparently. Seems that Aimee is one who has trouble with it causing her oxygen to drop into the 50-60% range. We also adjusted her doses of melatonin and clonidine that she takes nightly. Her blood pressure has been really concerningly low during sleep and this is a side effect of clonidine. Hoping that lowering her dose will not majorly effect her sleep. 

Next we headed over to Seattle for a wound VAC dressing change. Aimee was really worked up and in pain before the appointment. She had a wheelchair remodel done last week and it seems like something about it is not fitting well. I think the headrest is also pinching her ear to her hearing aid. She calmed down when I removed the aid and gave her some valium. 

The dressing change did not go very smoothly, probably cause we didn’t have Ed’s help this time. We had trouble with leak alarms from the machine that took several attempts to fix. Aimee did not tolerate moving in and out of her chair and kept choking/gagging. However, the wound is continuing to make progress. Some more silver nitrate was needed to burn off excess growth, but otherwise it looked healthy. Looks like there is a good possibility that we may be done with the wound VAC after 1 more week. 

We got out to the van to find that someone had parked on the dashed lines. I had to get her wheelchair up onto the ramp without having room to go directly. It is getting harder to this as her chair just keeps getting heavier. 

A tough day, but we made it home in one tired piece.