Today’s Update 7/19

I’m writing this now while I’m still awake and feel pretty clear. Last nights was tough to write. I kept realizing things I forgot and was very tired while I wrote it. So we’ll do today’s a little mentally fresher!

Last night when we went to sleep Emma’s temp was non-existent, her heart rate had calmed down and she was resting peacefully. I awoke at 3:30 when she became very irritated with the nurse giving her her meds. After taking her vitals her fever was back over 104 and her heart rate was soaring. If her Tylenol runs out in the slightest her fever strikes with a vengeance. She was quickly given Tylenol.

The next problem was she needed her electrolyte levels checked. Her port she originally had in her arm blew in the MRI yesterday for some reason so it was gone. The nurse said sometimes they can draw blood thru her IV, we were not that lucky. Her elbows were all used, her veins in her hands were too difficult to use after a failed attempt, so they moved to her feet. She was less than impressed to say the least. Emma’s very sore between her seizures, fever and over all poking/prodding. Having 4 people laying on her so she didn’t get the poor nurse drawing her blood was not fun at all. That misery was over quickly thankfully.

She is so exhausted from everything when she fights anyone too much she quickly gets tired and sleeps for hours. We had a very quite morning. Tom ran home to do some errands and save our poor little Bella from the vet clinic. She went to be spayed the morning of Emma’s seizures. She spent a little extra time there and was very glad to be freed. So happy in fact she talked to Tom the whole ride home.

Emma’s MRI results were back mid morning. Her EEG originally showed damage only on the left side of the brain. The MRI showed damage on both, more extensive on the left. They are optimistic that she should recover most, if not all of her function. It sounds like she will be on a seizure medicine for quite some time when she gets home. Her neurologist is amazing at answering questions. Dr. Victoria is one of my favorites so far.

Then the days excitement came when we left ICU and went to a normal room! After some chaos while getting settled and we may still be looking for a bedside potty I believe we’re getting situated. She had a lot of confusion when we first moved. I mean a LOT. Emma was very agitated, was yelling for Taylor and worried about her pet dragon (ok that was a little funny). She fell asleep and woke up for awhile to visitors. My parents came and she was very happy to see ma-ma and pa. They brought her a whole goody bag of stuff to do when she started feeling a little better.

The infectious disease doctor stopped in and asked many questions. They are waiting for her original labs to come back and seeing if they need to run more.

Emma is looking a little better with each baby step. She is uncoordinated and mad we won’t let her get out of bed. But she finally ate today, a cookie and a banana. After recovering for her confusion she was awake and sociable with Tom and I for almost a half hour. I’m looking forward to what should be a peaceful evening for us and a restful evening for her.

If you would like to send Emma an E-Card the hospital will deliver it to her. The link is: https://www.akronchildrens.org/cms/get_well_ecard/mobile_index.html

If you care to send her anything she is in room #7230 at Akron Children’s Hospital

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