PICU, Day #5

I’m in one of the nap rooms of the Ronald McDonald house right now.   This place has been a godsend, I tell ya.  The main RMH is about a mile away, which is used for families of longer-term patients.  This one in the hospital is just for PICU and NICU families.

Today I had lunch with a group of moms, provided by the RMH, and they were all new parents.  The mom that I saw last night came down and sat next to me and thanked me for coming to her last night.  I told her how happy I was to see her.  Her new baby girl, a week old, is having significant respiratory issues and apparently had turned blue repeatedly while they were in there, requiring being put on a vent.   They were warned last night that the baby will most likely require a trach.  Small world, huh?   But I really was so glad to see her and to know that she was doing okay.

Hannah did great through the night.  They gave her a dose of Lasix overnight because her urine output was getting low, most likely a side effect of the medication she has been given.

I was there when they did rounds on her this morning.  Very interesting being in a teaching hospital.   The resident wanted to try and extubate her today, but the attending (whom I have talked to every day since she has been in the PICU) said that he wants to wait and see how she is on Monday.  Had she been a ‘normal’ child, they would have attempted a “extubation trial,” but as the attending said, he does not want a ‘trial’ with Hannah due to her Gaucher’s and it’s problem with laryngospasms.  So they really will only extubate her when they feel she is ready.

Again, the attending had said to me with a huge smile on his face, “She really is doing great.  Just as we had hoped.”

She does look good though.  Definitely getting more fiesty, and I am starting to see more personality shine through.  She is having to be sedated more now because she is waking up more and less lethargic.  But she has been trying to turn over onto her stomach and side to sleep (they have her on her back), and she is grabbing at all the lines and tubes on her left side with her hand.  They had to move her down towards the end of the crib to keep her away from them — even WITH wrist restraints.   Also, she got lose from the wrist restraint once and tried to pull out her tube.

I had to laugh when they told me that — THAT is my  Hannah.

If all goes as hoped (I have learned not to say “planned” here in the PICU/NICU since nothing seems to go as planned with many of the parents I have met), she will be extubated on Monday and put on a CPAP machine.  Hopefully from there, we can go to the PCU (intermediate care unit) and eventually up to a regular room on the 10th floor where we started.

A sense of relief came over me today when they were saying that she is ready to be extubated.  That means she has definitely improved since Monday when this all started.  I am also relieved that the attending also agreed to wait until Monday to give her a few more days to get the junk out of her lungs from the pneumonia and virus.  I don’t mind the extra couple days being on the vent if it means that the light at the end of this tunnel is very close by and not a distant dream.