Movin' on up (to the 4 East side)

It has been a busy (and tiring) few days.  Elyse was cleared to leave the PICU on Sunday, and was moved up to the "4 East" recovery wing that afternoon.  Her first few days off the narcotics went as well as we could have hoped -- she was quite dopey for the first 24 to 48 hours, but the fog slowly lifted as she continued to become more alert and focused.  

 

Her biggest withdrawal symptom over the weekend was insomnia and restlessness -- even though she was exhausted, she could not keep her eyes closed for longer than 30 seconds.  But despite not sleeping, she was quiet and did not seem to be in any distress.  The team continued to try and optimize the timing and dose of each medication, in order to keep her comfortable but not needlessly over-medicated.  Unfortunately, despite her orders being written out and transferred along with her, her Sunday evening dose of Clonidine was missed.  This resulted in an extremely long and miserable night for everyone.  We did not find out about the error until the next day, but needless to say, it will not be happening again!

can I just go home already?!

 

Elyse finally started sleeping again on Monday, and we are continuing to notice small improvements each day.  Where yesterday she was very sensitive and reactive to noise, today she has been much calmer with less of a startle.  We are figuring out what she needs and how to stay ahead of her withdrawal before the symptoms get out of control.  It is a heartbreaking thing to watch her go through, but one of us is always with her and we are doing our very best to keep her as comfortable as possible.

eight months old

(and catching up on some much-needed sleep)

 

Aside from the withdrawal, her recovery is going very well.  She ended up only needing supplemental oxygen for two days, and is back to breathing room air again.  Her PICC line and ECG probes were removed today, so the only tubes and wires left are the oxygen saturation monitor and feeding tube.  The occupational therapy team is coming to visit her tomorrow to ensure she is able to start oral feeds safely again, and there is no residual damage from the breathing tube.  We still don't have any idea how much longer she may need to stay, but at least progress is being made.