My’s pain was at a 9 for most of the day. They continued to be extremely nauseous as well. The doctors are making some adjustments to see if anything helps. My went off of their feeds from noon-4pm just to see if that helped nausea, but it did not. The catheter is out.:. For now. My still can’t go on their own, so it might have to go in again if the going doesn’t happen by midnight tonight. They assured us this is totally normal, and can be caused by all the pain meds.

The worst part of the day was when the day nurse was helping My to the bathroom and then changing their gown. I always leave and go to the family waiting room to give privacy. After waiting a long time, I came back but the door was still closed. I went to the waiting room for about another 20 minutes, and the door was still closed. No nurse in sight. Went back to the waiting room for awhile and then went to My’s room again. I stood there having a feeling that something was off. I looked around for My’s nurse or her helper and neither was there. I thought I heard screaming and crying but it was so faint it sounded like maybe down the hall. My is extremely private, so it makes them legit sooooo mad if I were to see them changing or going to the bathroom. I didn’t want to upset them, but I kept thinking I was hearing a very very quiet scream cry. U walked in, and My called my name absolutely sobbing, red faced and covered in tears. Every alarm in the room was going off. Crying they told me they had been alone in there for so long. That the nurse left them in the dark. No call button. My said they were in pain and they were scared, and as the alarms rang on and no one heard them it upset them and scared them more and more! I sat with them for a bit and then went up to the desk and explained this is unacceptable. My on the spectrum and when going through this, the last thing they should have to worry about is being afraid or having an autistic meltdown. My now has a sign on the door that says family must be notified when changes and restroom breaks are done, patient can not be alone. Man my heart just broke. I felt on the verge of tears myself, but accidentally walking in on them has been so so upsetting I didn’t want to do that either. We made a deal that I they need to be ok with me just peeking in to ensure they are not alone without them being upset with me moving forward too. Gosh such a horrible way to see your kid so super upset. My’s nurse had also accidentally bumped them and that gave shooting pains several times today. It was a hot mess.

I will say My seemed a little better after the scream cry. Like that loosened up some of the chest heaviness. They were quite a bit more talkative too, although just relatively speaking.

PT was in but My only made in from bed to bathroom to chair. They want us to start doing more on our own with My and their nurse but between My being super sick and the nurse not being available it’s almost impossible. We’re told it shouldn’t be something we take on to ensure happens, but in reality it really is.

I’m so beyond exhausted from our long night last night, that I would fall into a deep sleep on the hospital couch over and over. Then be woken up a few minutes later by doctors, or meds, or blood sugar checks. It was horrible, so I dipped a little early. Just a little. Left the hospital at a little after 9pm and am hoping for some sleep for both My and I. Daniel is on hospital duty tonight.

Diabetes team seems to have blood sugars more under control tonight, so hopefully that will help My get some sleep too.

So here the Ohio 9:15pm sunset