Monday, January 14, 2013

Crying in pain

On a good note...Reagan slept last night. She was very restless and Daddy laid with her for quite a while to finally get her to sleep. But she slept. She slept til about 9:45 this morning. The bad news is, she woke up crying and continued to cry the entire day! Thankfully, we did have a nurse today. We actually had TWO show up this morning (usually we have the opposite problem)! Anyway, God bless the nurse that stayed because it was quite a grueling day. Nothing helped Reagan today. Nothing. We tried Lortab (twice), Toradol, regular ibuprofen, clonidine...nothing worked! She only dozed off twice all day and only for 30min or so each time. And she was crying...real tears, holding her breath and turning blue crying. Not good. You just feel so helpless on days like this. You question everything you're doing. Are the medicines making things worse? What on earth can we do to help her?!?! I sent two emails out tonight to mito specialists on either side of the US to see if they might be able to help. We are willing to go where ever we need to in order to help our girl! Someone has got to know something about this, right?!?! We have an appt with a new GI doc on Thursday and hopefully we can get some insight from him (our other GI thought he might be able to help). I definitely think we're dealing with some sort of GI pain, but what is it and how do we treat it? I don't know. Please keep our girl in your prayers...if she could just get some sleep and sleep this off!!! No night nurse tonight, so keep us in your prayers as well!


charity said...

i feel so bad for reagan when i hear shes having a bad day. i wish i could help you and her both. praying she will have good days soon

Anonymous said...

i feel awful for you and her! i came across your blog when doing some research about mitochondrial dissorder. while i was doing it i read about the link between mito and migranes- aparrently the migranes occur in a significant percentage and are often accompanied by vomiting. it's more than likely that you've already discovered/been told this for yourself but if not it may give an explanation for the obvious pain on her bad days. I hope this is helpful in some way :)