PCU, Day #36, Transfer in the Works!

It is almost 10 pm here, and Hannah has been asleep for 4 hours – hallelujah!    That has been her average amount of sleep for the past few nights, even with the addition of benadryl (which we are stopping because apparently that causes urinary retention when used with other certain meds).

It is such a beautiful thing watching her sleep.   With the exception of the few hours after she wakes up where she starts showing signs of personality and happiness, the rest of the day she is incredibly miserable — crying, agitated, wrestling around, bored, half-awake, and exhausted.

There was a bit of mini-drama yesterday when the attending on call (not our normal attending) saw an abnormal T-wave on Hannah’s monitor, so he ordered an EKG.  With Hannah’s lack of urine output from dehydration, her tachycardia, and her other withdrawal-related issues, he was concerned that things were becoming more complicated with cardiac involvement.  Fortunately, it all turned out to be a false alarm — at least we know her cardiac issues are stable now that she has had an echocardiogram and EKG this hospitalization.

Things seem to be a go for our transfer to Sunrise Children’s Hospital this week.  Our discharge planner told us that we were approved and will be taken via Kangaroo Crew fixed-wing transport (air ambulance) “towards the end of this week.”

We are at the point now that Hannah just has to be weaned off these horrible sedatives that are still in her body.   We have a plan from her intensivists here at TCH as well as her neurology team so that the new team at Sunrise Children’s Hospital can continue on this plan and modify it if needed.   Our main goal is to get her through the withdrawals and then once those are more stable, then we will tackle the remaining choreoathetoid movements (if they still are present) as well as the seizure issue (which everyone thinks was due to hypoxia from her breath-holding spell and not a seizure disorder).

Our fellow feels that Hannah will likely be in the Vegas hospital for another two weeks once we are there before they can continue the weaning as an outpatient.   I can handle two more weeks in a hospital as long as I get to see Ethan and Abigail every day, all the time, as well as be able to take a break every once in a while — Daddy can spend the night alternatively so I can actually get some sleep in our new home — the home that I have yet to see in person in the neighborhood we are living that I have yet to see!

Time passes so slowly here.   Hannah is so miserable when she is awake, and there is very little we can do with her.  She has PT and OT, which have been a great distraction, but she has a hard time watching TV, and she just can’t play with any toys yet (not even hold them) because of her withdrawal and choreoathetoid movements.  She is just frustrated, bored, and exhausted.

But the good thing is she is still sleeping as I post this.  Thank goodness!   Every hour of sleep she gets these days is a huge step towards progress of getting her through the next few weeks.  The more sleep she gets, the stronger her body gets to fight.

To end on a humorous note…. the nurses have basically forbid anyone to come in here unless absolutely necessary because she is asleep and has been asking people not to come in!   The housekeeping guy came in here and started trying to clean up in here a bit ago, and they basically scooted him out the door!