No more PICU

The last couple days for raena have been a bag of mixed feelings. Not seeing her all weekend was difficult and I didn’t know what to expect when I saw her since she is no longer intubated and off of her meds. Yes, that’s right, off her meds. At least via a constant drip. The only narcotics she is really on are methadone and Ativan 3x a day. The Ativan is even half the dose that it used to be and they are giving it to her via the feeding tube and not intravenously. She is still on steroids which they are weaning her off of as well.

The goal is to reduce meds to see what she can really do. It’s hard to get a good evaluation when she’s always drugged up. The main issue at hand seems to be chasing her blood pressure. The doctors aren’t sure what is causing it and instead of just giving her BP medicine, they are trying different things to see what could be causing it instead of making it with drugs.

Raena has more movement of her body being off of the meds but her left side is still very weak. She can move her left leg more than her left arm but at least there is some movement.

As of yesterday, Raena was moved out of picu and into the normal peds wing of the hospital. The goal now is to determine what might have caused the bleed, how to best feed her, and PT/OT to rehabilitate her. There is still no prognosis of what to expect or what is going on with her yet. The team of doctors are supposed to meet today and try and come up with a plan now that she’s out of picu.

A speech therapist is supposed to do a swallow evaluation today or tomorrow to determine if she can start to take liquids or food down herself or if she will need a ng tube for future feedings. The ng tube would go directly into her stomach and would replace the nj tube that is going up her nose into her intestine.

It is very hard at times to watch raena flail her arm or leg into different positions and even whimper at times and not be able to figure out what is wrong. She goes through moments when she just doesn’t feel like communicating at all and others where she will cooperate. I can’t tell if this is 10 year old attitude or just recovery from her brain injury. The nurses think it might be her tummy hurts as she has not had a bowel movement in a few days. They are going to talk to the doctors about that as well.

The good news is she can have visitors of any age now that she isn’t in the picu. I really want ashlyn to visit but that will depend on how ashlyn feels. I will be with Raena all weekend from Thursday night on so if anyone is planning on visiting,  please text or call me first. They allow multiple visitors but at the same time they still want it to be somewhat quiet and controlled since she is in a new environment and everything is new to her. They don’t want a lot of cross conversations going on at the same time either.

All in all I think raena is doing better but it is hard to tell and definitely has a long road of recovery ahead of her. There is talk of her eventually being transferred to an acute rehab facility or a nursing facility to help with her PT and OT. Once I get a chance to talk to the doctors today we will know more.