9.30.21 In Murky Waters

Aimee is not doing well. There are several different issues and we aren’t sure how they are all related. One is very frequent back and stomach muscle spasms, possibly with seizures, possibly dystonia. Another is secretions being very challenging to manage ranging in extreme variableness from desert dry to a fountain. This is causing mucous plugs and many exhausting interventions. She is requiring near constant respiratory support through the bipap. She is still having low urine output and high ostomy output. She is also having more trouble with maintaining body temperature about 95 degrees.

Yesterday we met with her Neurodevelopmental doctor. He said that the autonomic system gets tired and wears out in complex kids like Aimee. Many of the issues she is having could possibly be explained by that theory. Disadvantage, there is nothing to be done about it. 

Following a conversation I had with her GI specialist on Tuesday, we had urine taken and blood cultures done yesterday evening to check for hydration status, ect. Trying to decide if there is anything more to be done from a GI standpoint to manage her secretion/hydration issues. We will be having a contrast study done as well to rule out any mechanical issues. 

Today I met with her Neurologist who wants to do a new EEG. She was suggesting an inpatient study so that we could do an extended picture and soon, but we argued for a simple outpatient one. Disadvantage is that they are a month out to schedule. 

This afternoon we met with the Palliative/Hospice team, called Carousel. We are going to increase her CBD much higher to see if dystonia is the root cause of all of this. We also had a long conversation with the Carousel nurse about considering a trach. Depending on how her labs look, depending on her response over this next week to increased CBD, if we can rule out an acute issue, we will consider going to pulmonary to discuss a trach. When it came up while we were inpatient, we told them that we just wanted to bring her home. We wanted to have her here for 2 months and then re-evaluate. We thought that home would heal her and bring her back to where she was. It hasn’t. I hate to admit that, but she is worse overall than she was when we left the hospital. She has had some good days, but overall, she has declined.

What we do next will not be an easy decision, but where we are currently is not okay. This is not manageable. Aimee is not living well currently. We do not want this to become an emergency situation, but instead would like to make a planned choice on what is best for her going forward. We are trying to find footing, to find a path that leads us to more happy times with Aimee.