Today’s Update 7/21

Oh what a day it’s been! Very full of ups and downs. Our ups were big but sadly so were our downs.

It was a rocky nights sleep. They keep trying to cut out Emma’s Tylenol. Every time they do she gets crippling headaches. By they, I mean the infectious disease team. The nurse went rounds with them yesterday and finally got her a dose, but it was the only one. Our night nurse last night was super sweet. Say a prayer for Kate, the woman’s 8 1/2 months pregnant and still handling sick kids like a champ. I told her today she was awesome, I hope she realizes I was 100% serious.

One thing our rough night did was give Emma an appetite. She’s eaten 4 vending machine cookies and a banana since Thursday. With no dietary restrictions I let her run wild. Bacon, a doughnut and chocolate milk. Yes, she may be a cardiac patient next. She ate 1 piece of bacon and about 1/4 of the doughnut. Don’t fear there’s always room for chocolate milk!

We met with the infectious disease doctor next, I’m not so sure how much I like this man anymore. He is nice, explains things well, but don’t tell me right now my daughter needs to learn how to deal with her headaches. She’s 4, fresh out of ICU 2 days. In my opinion she’s doesn’t need to learn how to deal with anything right now.

Next was neurology. Dr V is a champ. “Your daughter had a series of severe seizures. I’m putting her on ibuprofen if they have a problem with it I will handle them”. Don’t mess with Dr V, she may be a 4’10” petite Asian woman but any one who can wear heels like she does all day has to be tough. Those bad boys are impressive. Dr V decided we may need to do an eye exam.

Then came rounds. By is point in time Emma was in rare form. No sleep, no pain meds, they didn’t touch her out of fear for their safety I believe. It was decided she needed to meet with a physical therapist.

During rounds her nurse dropped off a stack of papers. And then another. 45 papers to be exact. They were all e-cards, she loved them! Thank you!! You added some happy to a grumpy morning.

Her ibuprofen came, it was a fight to get it in her but it’s in. Her nurse thinks it’s a control issue. One thing Emma can control right now is what she takes in voluntarily so she’s boycotting oral medicine. Her day nurse today did great at getting it in her. This is also why her anti seizure meds are still being given via an IV.

So after a night and morning of a cranky butt, things got worse. Emma was very confused for the next hour. She was talking to her brother Taylor, who was not there, did not know me and was highly irritated. After this episode she sat up and acted like all was normal. We wandered around the room, she has to stay in because of her possibly spreading her illness thru droplets, played with a magnetic doll set my mom get her and just chilled.

She was pretty tired after this and laid down. We had a visitor (great aunt Robin), Tom came back with the boys and Toms mom came to pick the boys back up. She woke up half way thru these visits very out of touch. There was no concept of who I was and her pupils were very large. Everyone left besides Tom, we put in Frozen that Tom brought from home. By “Do You Wanna Build A Snowman” she was half singing along and back.

Emma was fairly pleasant the rest of the afternoon. She was due for more ibuprofen at 6 so that ticked her off some but it went down. Now she’s sleeping sound and I’m taking advantage to inform the masses. Next May be sleep for me.

Today’s Goods:
– walking all over the room, trying to convince me she could walk home
-playing
– eating, even if it was bacon, doughnuts and some fries for lunch
-laughing
-NO more IV fluids

Today’s Bads:
– a heart rate that has bounced all over, this meant no losing of the heart monitor today
– 2 episodes of utter confusion
– watching Frozen….

If you would like to send an e-card you can do so at the following link:
https://www.akronchildrens.org/cms/get_well_ecard/mobile_index.html

If you wish to send her something she is in room #7230

Here’s a few highlights from today: playing with her magnetic dolls, a elephant balloon Taylor found for her at the gift shop and eating her sprinkle doughnut (believe she was happy in this shot). Sorry the pics are so rough and unsized. I’ve been blogging from my iPad and don’t have all the kinks worked out.

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