PCU, Day #30, New Floor, New Hope!

Even though she had to be completely held while she sat in order to keep her sturdy, her OT got her into a sitting position 3 times today. Hannah seemed to really love it! (And look at her hair - it has grown!)

No, that is not a typo — we are in the PCU now!   (Progressive Care Unit).  Room 711.  A huge private room with two TVs, a private bathroom, and a couch that pulls out to a bed.

We got moved up here at 4 am this morning, after the night attending felt that Hannah was ready to be moved up, especially since he was going to be covering the PCU floor, “red station.”   This way, we have the same attending following her and knows exactly what has been going on.

Today was another good, good day.  Hannah was still moving around this morning, but I would still rate it about a 5 out of 10 compared to her worst last week.

It was another very busy morning… rounds with even MORE people, all new, except for our attending.  Today’s plan was to wean the methadone (was cut in half today), do an 8-hour CPAP trial (which she passed), and work with neurology on her movement disorder.

Neurology showed up about 20 minutes later, and their plan was to slightly increase the Klonopin to see how that affects her movement disorder.  The Keppra is staying the same.   They still don’t know why this happening, but the plan is to get her controlled first, and the Klonopin seems to be working.

Occupational therapy showed up, and she worked with Hannah for at least 30 minutes.  Basically working on range of motion exercises, trying to get Hannah to do purposeful movements, and to help her with control.  They are going to put in an order for a tumble form chair so we can work on getting her to be able to sit upright more, especially since she is too weak and not in control enough of her body to do it on her own.

Then, the transfer planning coordinator came to talk to us!   She talked about what our plan was to get to Vegas, and she said that she would start working on it.  Because we don’t have many of the doctors we need there yet, she said “not to worry,” that they will put together a team for us for Hannah for whatever we need.  When she asked me when I wanted her transferred, I told them that as soon as the docs would feel she is stable enough for a regular room is when we would want to be transferred to finish her recovery in Vegas.  We want to get her trach situation stable, her neurology situation under control, and whatever else we need so that all she has to do in Vegas is PT/OT and recover.

Daddy and I already started our trach training today.  The nurse was apparently impressed that we were willing to jump into it so quickly.  Since Daddy has to go back to Vegas on Saturday, he is the one who was trained first and will probably do much of it until he leaves.  But he was guided to do a trach change and bag/suction.  He did great!  We have our trach CPR class on Thursday afternoon and our trach change class on Thursday evening.  I am so glad that Daddy is here for this!

One of the best things is that we got to hold her today, for 4 hours!   She finally fell asleep at around 3 pm this afternoon, and she is still asleep now at 10:30 pm.  Her body is FINALLY letting her rest, and it is a beautiful thing.  Both Daddy and I got to let her nap on us, just like old times.   It was wonderful!

Also, she apparently has a leak in her trach (good thing!) so we are hearing a whole bunch of babbling come from her.  We were prepared not to hear any sounds because of the trach bypassing the vocal cords, but I don’t know if Dr. Roy, Hannah’s ENT intentionally did that, but we are so grateful.  She still has a voice!  It is much softer and a bit mousier than before, but it is so dang cute 🙂

Tomorrow we are hoping to do a humidifed-trach collar trial tomorrow in hopes of getting her off the vent in the next day or so.   I admit that I am nervous about her not getting off the vent and needing it 24-hours a day, but all signs are looking promising that it may not need to be that way.  Especially since she dropped no less than 98% during her CPAP trial today, even when she was sleeping!

As I type right now, in the comfort of our private room, the nurse is giving my sleeping Hannah a bath.  Hannah really is just out!  She moved a bit and complained during the bath, but she fell right back to sleep.  Her body is finally resting!!

I’m looking forward to tomorrow, full of hope 🙂