There were two more tests that one of the docs ordered that the hospital doc said weren't that important. We tried to get them done yesterday, but they couldn't be done until next week. We miss our girl so much. So, we decided not to extend our time here and to keep our scheduled flight home today.
While in the EMU, you are not allowed to get out of bed without a nurse present. Thus, not much movement at all and nothing like being at home with a one year old. So, we kept asking/begging if we could move more. They finally said yes on the last day and allowed me to move around the room with B present, not a nurse. Well, they came in at 10am to tell me I was going to get to go home and they removed the EEG. There wasn't much movement during all of that. We finally got back to our hotel room and I stood in the shower for over 30 minutes trying to get the glue out of my hair (this was the longest I had stood the entire time in the hospital). Soon after getting out of the shower, my headache was a full blown migraine. I took the meds for it and then had a seizure that knocked me out pretty good...
The migraine continued throughout the evening. B rubbed my shoulders because I was so locked up...I had another seizure on the way to bed. I had another one last night in my sleep. So, the argument we were making from day one in the hospital just seems to be proven that when my blood flow or heart rate is increasing, so are the seizures.
We are trying to quickly decide if we need to stay through Monday and finish the tests. We are on the phone with the airlines seeing if the tickets can be changed with no fees. We tried to go home yesterday and it was a $500+ change fee on each ticket. So, we're seeing if it's even possible to stay through Monday.
Lots of prayers, please!
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Hello!
ReplyDeleteI pray that the doctors opens their minds and thinks outside the box. This same thing happened to Caleb and if we did not treat the POTS/dysautonomia he would still be having many episodes a day. The neuro's were always afraid the blood pressure medicine would cause seizures. With my son it didn't and Caleb is HIGHLY sensitive to all medicines and foods. The blood pressure pills were really what controlled the episodes. Plus enzymes are needed....especially ones to help lower histamine. Please check into histamine/mast cell issues. www.prettyill.com.....this is coming from a doctor that has this. This will explain...headaches....POTS....and the episodes. Plus on that site there is a document that states a 12 year old child that was misdiagnosis with epilepsy that was never controlled come to find out he had a mast cell issue. God is revealing the pieces of the puzzle....