2.18.18 This Week

Unfortunately, Aimee is in the middle of another respiratory bug. We’re using all our tricks and so far staying ahead, but the timing isn’t great. Her nurse had vacation scheduled and we got hit with a snowstorm that has our power knocked out. Thankfully, we have been given a generator to run her equipment, but it was a pretty tough night last night as we didn’t have the generator prepared and the power went on and off. We did inhalers, cough assist, deep suctioning and managed to keep her at okay levels. 

Other bits of news from this past week:

Monday Aimee started school for the first time since June. She was so excited when she heard the school bus pull up and enthusiastically participated all day. We were pretty surprised, given that it was a new school and that she has been so lacking in energy lately. She made up for it with some tough days and then this sickness unfortunately. 

She also had 2 appointment days. We met with her neurologist, who decided to double one of Aimee’s seizure med doses to attempt to rid her of these more frequent clusters. We are slowly moving the dose up over this next 4 weeks. 

We also took her in for spine x-rays and her first rod expansion. Unfortunately, this appointment was scheduled incorrectly and after a long delay, we ended up only getting the x-rays done and having to return for the expansion next week. 

This coming week, we will be attempting the addition of a night nurse 2 evenings a week. It seems a bit unreal, but to have 2 nights a week that we don’t have to perform her 90 minute bedtime routine, don’t have to wake up to give two sets of during the night meds, don’t have to respond to o2 alarms or bipap leaks, and don’t have to do repositioning to get Aimee settled back down... it may end up being a big blessing and help us in our quest towards restored health.