Hospitalization, day #1

At the end of Hannah’s first full day of hospitalization, I will admit that I am incredibly worried, as her condition has worsened and become more serious since she was admitted.

We got to TCH’s ER around 10 pm last night.   We spent 9 hours in the room there while they worked on her and eventually waited to be admitted.  During this time, Hannah was just inconsolable.  She would not lay on the bed, and she would only lay in my arms.  But even then, she was thrash around because she was just so uncomfortable.  She had not really slept in 2 days, so we knew she was exhausted.    They started her on fluids, ran some bloodwork, and she started having a couple of breathing episodes there when she started hyperventilating and turning blue when getting upset.    During these episodes, her oxygen sats dropped into the low 80s.  But she was definitely stable enough to be moved upstairs.

Since we have been on the floor, Hannah has been seen by over a dozen attendings, residents, and students.   We have a nurse right outside our window, which has been really helpful.

Most of today has been a blur, so for now, I’m just going to copy/paste my facebook updates of how today played out.  When I get time in the future, I will write it out more detailed.

Last night, 11:50 pm
Sitting in the main waiting area at TCH with Hannah, who has a nasal cannula, pulse ox, and 2 IVs with over 50 or so sick kids because there are no rooms available. I’m one pissed off mommy!

3:00 am
Waiting for chest xray #3 today, concern now she aspirated during seizure. Also waiting for a room upstairs because they want to admit her.

5:37 am
It is 530 am. Do you know where Hannah’s room is? Neither do I. Miserable night in the ER.

7:30 am
Finally in our room at TCH. Hannah is finally sleeping after being inconsolable all night long in the ER. Waiting to see the doc. No idea what their plan is.

11:25 am
Hannah just had her first racemic epinephrine treatment. lots of docs and lots of conversation. seizure most likely related to hypervent episode at home and lack of sleep for 2 days. still having cyanotic episodes when she gets really upset. was told to plan to be here anywhere from 2 days to 2 weeks.

3:30 pm
Looking at a sleeping Hannah running oxygen at 99% on room air. considering she was at 90% just 7 hours ago, requiring oxygen, this is a beautiful thing!

4:25 pm
Didn’t get racemic epinephrine treatment in time. Another seizure. 10 docs outside deciding whether or not to transfer her to PCU. Will probably be loaded up on antiseizure meds until we can get her through this virus. Then reevaluate. Seizures still considered secondary to virus issue.

7:14 pm
Staying on the floor for now. Will probably be moving to PCU if another seizure happens. She is sleeping comfortably on 1-liter of oxygen on cannula, loaded up on two seizure meds. Big test is what happens when she wakes up.

8:20 pm
CT head scan done just to rule out ‘any surprises.’ When she is sleeping, her breathing is wonderful. When she wakes up, she can’t breath, becomes hypoxic and cyanotic.

45 minutes ago (10:45 pm)
Just had another racemic epinephrine breathing treatment. She has so much difficulty taking breaths when she is awake. Almost no aeration at all. Oxygen has been a lifesaver, as her sats drop into the 70s very quickly, but she passes out after she stressed out so much from trying to breath. But when she is sleeping, she breathes wonderfully. Starting a new drug in a couple of hours to help thin out her secretions.

As today progressed, Hannah’s condition has worsened.  We went from an inconsolable child who was just having gagging problems with her respiratory problems to a child who cannot even breath when she is awake.  Seriously, she has difficulty even taking a breath.  It is heartbreaking to see.

I hope tomorrow brings the beginning to healing for her.  I miss my little girl.