October 26, 2018

The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis. 

We have had a very rough night here in the PICU.

Over the last two days, Annadelle has started complaining of significant back pain despite being on Presidex and Fentayl. The bolus doses of both seem to not do much good in helping to calm her or ease the pain much. At one point tonight, Chris could not calm her at all because she was crying so much from the back pain.

Her doctors are not sure what is causing this onset of increased pain. Chris and I suspect there is something going on in her abdomen because for the last two days, they have had to pull a lot of air off her stomach through her NG tube. For reference, prior to this week they had pulled a maximum of 3 syringes of air over one shift, now it is about 7 syringes of air over a course of 1-2 hours. She will have an X-ray of her abdomen done in about an hour. Hopefully that will let us know if it is something from her abdomen or if we need to look for another cause of the pain.

Several have asked me about the possibility of a trach being put in. We have asked about this and been told we are not at that point yet. If somehow they are able to ween her over the weekend, we might pull the tube and see how she does next week. Dr. Sanchez was concerned about the lack of chest rise, but I have noticed a good increase in that overnight. I’m not sure if they will try pressure support again tomorrow since we have had such a rough night, though. To be honest, I don’t have much information.

I’m terrified and asking for many much needed prayers.

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