"Suffering the Slings and Arrows of Outrageous Fortune"

another day

I guess Emily is paying for her 2 hours of visiting yesterday. Either that or she is continuing to go downhill. More headache. More dizziness. More exhaustion, weakness and lightheadedness.

I couldn’t get her woke up until 2:30 today. And she went straight from her bed to my bed to rest. She drank a little cherry limeade but is too nauseated and tired for anything else. She said maybe if she slept a bit more she would be hungry when she woke up. So, all I can do is let her sleep and hope she wakes up feeling better in a while. I tried to take her pulse before she got up. It was really fast so I went and got my phone so I could time it. When I settled down to take it, it went from really fast to very slow in a few seconds. It also seemed odd – like there was a background beat or extra beat or something. I can’t quite describe it. I am no expert at taking a pulse but it doesn’t seem quite right.

Truly, it *feels* like an emergency but I guess no one else views it the same way. For now, all I can do is wait for the MRI and the results. But I get closer everyday to just taking her to the ER – if I see a hint of more serious symptoms we will go.  The only thing that holds me back is that the ER is clueless on how to deal with any of this. At best, we would get a sympathetic, compassionate dr who is willing to listen but unable to help. At worst, we could get the moron who refused to order an MRI for her back even though the pediatrician had sent us to get one. The wrong person working on my kid could do serious damage. This is in the terrifying, heart-stopping, gut wrenching territory. If I am right about what is going on with her, then it is quite certain that damage is being done to her brainstem/ central nervous system with every moment that passes. Why am I the only one who sees this? I know that Chiari and the related issues, like EDS, can take years to be diagnosed. At the moment, I cannot fathom waiting that long for answers. 5 minutes seems too long to wait.

This is one of those days that I am at the end of my rope. Just trying to hold on…

Regarding Ring Splints: Got a call from OT – we have an appointment  to see Gwen next Tuesday about the ring splints. They said something about resizing or refitting… I can only assume it means they have come in and Tuesday will be the fitting. Surely we don’t need more sizing to order the darn things. Funny how this is so much less important to me today than it was a week ago…

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