Ellie Belly: Room #6---Thur 2/28/19 10:30 AM (Post # 47)

I did not update yesterday. Sorry for anyone who got worried. Ellie is doing fine. I was just in a really really really bad mood. Just a...don't look at me or you will lose your head kind of day. Whoops! Sorry nurses that I was short with and Dr.'s that I crossed my arms at. It was the most patience I could muster. And that was basically 0 patience. I just could not snap out of it ALL DAY long. I was trying...but it did not happen.

Today is better. I think I was tired. I know it's an excuse, but I also think it was the truth.

Anyway. Tues night at 11:30 PM(I was already asleep) the nurse said we were changing rooms. So I got up and packed up all of our bags. They were moving us back to the PICU overflow in NTU. Over here they have 2 to 1 nurses instead of 1 to 1 nurses. I had been expecting a move for a few days, but why did they have to do it in the middle of the night?

I was really grumpy and sad to leave my HUGE nice new room in PICU and come to a tiny old room in the PICU overflow where I have no cell phone coverage unless I am over by the window.

So the good news is they think she is stable enough to move back over here and have a 2:1 nurse.

The other good news is that because she is MDRO (Multi Drug Resistant Organism AKA Superbug) they literally throw away ALL CONSUMABLES when you leave a room. So I got about 4 of the really nice hand sanitizers ($11 each) that insurance doesn't pay for, Probably 8 boxes of gloves and some other odds and ends. I am super excited about the hand sanitizers. I truly can't believe they throw them away. Doesn't that seem weird/ironic that they would throw them away?

They told me that I got to keep my nurse for the night (Tues night onto Wed morn), so that was good. But then when I woke up Wed morning, they had stolen her nurse in the middle of the night.

Then after we moved, she had 2 desats into the 60's early early Wed morning. I think she was rebelling being over here also. hahaha

I think between the late night move, going to a worse room, stealing my nurse without telling me, the 2 early morning desats, plus Wednesday was day 2 of me cutting carbs and sugar (carb withrawal)..it was just a crazy grumpy day.

Tuesday the Dr. wanted her to do a trial on a nasal pillow instead of full face mask on the bipap. A nasal pillow block off her nostrils whereas her normal bipap mask (called a full-face mask) covers her mouth and nose.

We have tried a nasal mask (not covering mouth) before and the air just comes out her mouth, hence why she normally needs a full-face mask..

The reasons the Dr. wants to do the nasal pillows is #1) to give the skin on her face a break (this reason I totally agree with) and #2) The Dr. is using it as an in-between step of still giving her pressure, but not as much pressure, before trialing going on the nasal cannula only (nose prongs giving oxygen but no pressure). It is kind of a weird way to ween off the bipap. We have never done it this way before. I guess it will work, but it is weird.

Nasal Pillows

The Dr also wants to go on slightly lower settings while on the nasal pillow. It is not much different. Actually I think she is on a much much lower pressure than the bipap is delivering since most of the air comes out her mouth anyway. I also think lowering these settings while on the nasal pillows is unnecessary, but oh well.

The Dr. is trying to be really conservative in her weaning process because it is so much harder to get the lungs re-inflated once they are collapsed.

Tues we tried the nasal pillows for 1 hour.

Wed (yesterday) we tried the nasal pillows twice for 1 hour

Today we will try the nasal pillows 4 times for 2 hours each time.

We also have been sitting her up in her chair once a day for about a week now. We have aimed for twice a day...but it just hasn't happened. Yesterday (Wed) we got her up twice. Today we are aiming for 3 times of getting her up.

She is still having low-grade fevers. I am super frustrated with that.

But she is doing good. She is coughing up a lot of stuff (good). She is awake for the entire day (good). She has stable vitals all of the time.

Today is day #22 and we the 6th different room.

In other hospital news...they have a new expansion coming up. It will be just East of the current PCH entrance, still attached to PCH. They will be moving offices into this building which will allow PCH to expand their inpatient units. (Greatly needed!!!!!!!).