25 hours without sleep!

As I write this it is Sunday afternoon and we just woke up from a 2 hour nap.

A nap, how nice they must be catching up on their sleep. Well, we are not exactly all caught up since Tiara did not sleep for 25 hours!!!! No I’m not kidding! This has never ever happened before.

Saturday at 1:30 pm the doctors turned off her sedation so she would be awake when they took out get et tube. An hour later they took out the tube without incidence and all was good. She was smiling, trying to talk and trying to get her arms working again.

After a while she seemed really shaky and a little anxious. Then her blood pressure kept rising along with her agitation. And then came the diarrhea, buckets of it.

They gave 2 doses of Ativan but that didn’t do much. The nurse finally got the doctors to come look at her again and it became very clear she was going through withdrawals from the sedation medication. Of course the type she was on never gives the kiddos withdrawals so they were all surprised. Hmmmm, sounds like Tt struck again.
They gave her some methadone, which is normally what they do but it was too late. She stayed up all night with huge dilated pupils, the shakes, diarrhea, elevated blood pressure and a super fast heart rate. My poor baby!

She made it through the night but I was totally whacked out by the morning. I know it’s not about me but I was starting to lose it. Thank goodness Lou showed up with my coffee early and was able to feed her breakfast so I could sit on my bed and stare into space for a moment.

Needless to say I realized how exhausted I was when I went across the street to get us lunch and I looked down at my outfit. I was wearing black pants, a grey and white stripped shirt and a black and grey stripped sweater over it. Two different stripped shirts together? Wow!

I then tripped on the sidewalk and almost went down. The two block walk felt as if I had completed a half marathon by the time I got back to her room.

After I ate and got some food down her, I had to lay down. She was still awake and I never sleep when she is awake but I had to lay down before something bad happened to me. Not sure what that would be but it seemed as if I was near death.

As I started to doze off I heard her gagging. I jumped up and turned her on her side and waited for her seizure to stop. I have never been so happy to hear that seizure. Every time she falls asleep she has the same seizure, that meant she was sleeping. Praise The Lord !!! We both slept for 2 hours and feel a million times better.

She ate some dinner, drank a bunch of fluids and is getting better quick.

She did test positive for c-dif but that is not a huge deal. So once she gets off the high flow nasal cannula they will transfer her out of the icu. I already spoke with all her doctors about letting her go home on oxygen during the day and they all agreed it would be fine since it is going to take a long time for her lungs to completely heal. Usually they want them oxygen free prior to discharge.

I don’t want to get too excited but I am praying we can get home by Wednesday night. That would be a 2 week stay, which is much shorter than I anticipated.

We would all be super happy with that.

Again thank you for all the prayers, love and good wishes, I know they play a huge part in her recovering each and every time.

xoxo tiffani