7.17.14 An Answer

This week we visited the Neurodevelopmental Clinic. It is a place to ask all those questions that fall through the cracks of the other specialties. Kind of like her all-around doctor at the hospital. 

This visit her doctor helped us with a social worker connection, updated equipment prescriptions, ordering blood draws for a carbon dioxide and vitamin D check, and one answer. We have typically assumed that Aimee's sobbing episodes are due to her digestive troubles that currently we are working to resolve. Yet, even with that relief, she is still having these nights where she sobs until we finally give in and draw pain meds. It is stressful not knowing what is causing her pain. Trying to guess what part of her body it is based. The doctor reviewed all her recent x-rays from different ER visits and provided us the answer. Her left hip is dislocated. This is not surprising because of her lack of hip sockets. Quite typical in kids that are non-weight bearing. However, knowing what is causing her episodes gives us a few tools. One, we can move her hip back into place. Two, we can massage the area. Three, we won't wait on pain meds. It isn't just her being emotional. She really is in pain. 

Thankful for an answer. 

7.8.14 Problem Solving

This last two weeks we have been following up with both the GI clinic Motility Specialist and the Pulmonary Sleep Clinic. 

Following her May hospitalization for bowel issues, we set up a plan of action with the Motility Specialist. We have exhausted the natural options and are finally admitting that what works for a typical body is not sufficient for a low tone one. It will probably be a long trial and error road, but it is a relief to have some options that will hopefully make Aimee's life less uncomfortable and ours less messy! 

I talked with the Sleep Pulmonologist who said that the night of Aimee's sleep study she had no desats. She stayed above 92%. She did need an increase on her bipap machine pressures. This was frustrating. I went with my instincts and asked to be set up with an oximeter at home to measure oxygen during her sleep. The doctor agreed, though based off of that one night, she wasn't concerned. Homecare set us up on Wednesday last week and we have had plenty of recorded desats in the 50-70% range while on Bipap. Too many. Even one episode where she satted down to 25% as I rubbed her chest. The beeping and running back and forth across the house through the night does get a little old, but it is terrifying to think this could be happening more than we know. Thankfully we have record now and the doctor can review what happens over a several night span rather than the one sleep study. I will feel much more confident in the decision that she makes based off of this information.