It has been a long day! I’m hoping to keep this short and get to bed while Emma is snoozing. Lots of ups and downs today but we ended on an up and that’s a good thing!
This morning Emma woke up bright and early at 4am. She was very agitated. Her crankiness lasted all day which made it rough. She did not like her night nurse last night for some reason, she seemed fine with me. 4 year olds have their own thoughts. Em slept off and on until 9 when doctors made their rounds. By this point in time she was not fit to be around.
First we met with the infectious disease doctor. He wanted to run a few more blood test to cover all of our bases and nothing has pointed to where the meningitis came from. This meant another finger stick later in the day…. Surprisingly that went fairly peacefully. Dr U believes Emma possibly may have had bacterial meningitis, but the first hospital she was at hit her with a very large dose of antibiotics immediately. It was 6 hours before her spinal tap and the time could have been enough to get the infection somewhat contained.
Next came the neurologist. Dr V is amazing. She answers so many of our questions patiently and thoroughly. They are worried with Emma’s constant drowsiness. I think it has improved today with the removal of some medicines. She assured us the mood changes were part of the illness. She checked Emma out and listened to her physical complaints. She has a constant headache (which is to be expected for awhile), a sore back and sore right leg. No ones sure where this leg fits in. Dr V assured us that with time and patience they are anticipating pretty much a full recovery. We’re looking at roughly 6 months of seizure medicine since hers were so long and intense.
Emma fought everything all day. This really wore on me. I know she can’t help it, I know she’s miserable. I did not have a good day. I’m worried about Em, I’m worried about our boys being shuffled all over and I’m going on a lot more caffeine than sleep. After a few mild break downs we came up with a game plan of Tom taking the boys home tonight after they came here to visit. There’s very little risk of them getting sick because they were with her and exposed to the germs prior. It was GREAT to see them and visit!!!
Our pastor came to visit and brought several cards and a few gifts from the church. The mood little cranky was in they did not interest her much. She grinned when eyeing up some new Frozen pj’s and a card that a school friend had made. Toms mom had brought the boys and our one niece at this time too. We had a full house! Everyone also cleared out at the same time.
The nurse used this down time to give miss Emma a bath. She hadn’t had one since Wednesday and her hair was full of collodion for her EEG.some patient combing and lots of scrubbing and her hair looked much better. While smelly was getting her bath I took a few minutes to grab supper alone. It was kinda nice. When I came back the girl who had literally been yelling at her nurse all day was giggling with her. They had cut Emma’s Tylenol out today to watch what her fever did. Well her dose the nurse gave her due to a mild fever (100) and rash had kicked in. She was happy and pleasant! We walked her to the bathroom to rinse her hair and then 2 laps around the room. She loved it, you should have heard her. It was a great way to end the day. Then Emma went to bed clean, fresh and in her new Frozen PJ’s. Hopefully she has happy dreams of Ana and Elsa tonight.
If you would like to send Emma an e-card, the hospital will hand deliver it to her. Here is the link: https://www.akronchildrens.org/cms/get_well_ecard/mobile_index.html
If you wish to send something to her room, her room # is 7230
Thank you ALL for the prayers, gifts, comments, texts, thoughts, cards, etc. you guys are all awesome. I cannot believe the support we are getting. I feel so overwhelmed, in a good way.