PICU, Day #18, Rough afternoon, Anxious morning

It is 2 am right now, so technically it is the next morning.  Yesterday afternoon was so rough and exhausting that I ended up falling asleep at 8:30 pm, only to wake up at 1 am and not be able to fall back asleep.  Ugh…

This sedation wean is a nightmare.  The narcotics were completely stopped by noon yesterday, and the Precedex was started.

From around 1:00 pm until about 4:30 pm, Hannah was agitated, shaking, and just could not be calmed down.   It was one of the worst things I had to sit through and watch.  She looked like she was going through withdrawals from the narcotics (Versed and fentanyl), and even though she was still on the phenobarbital and Precedex (and Ativan and methadone for the withdrawal), it was just not hitting her.

The nurse called the fellow and resident, but they wanted to stick with the plan of care.  I will admit that I was getting very emotional during this time because there was nothing I could do, she was so out of it that I could not console her, and even the nurse felt horrible and stressed out because there was nothing she could do.  Finally, around 4:30 pm, she fell crashed and fell asleep.   She was just absolutely exhausted.   There was a point towards the end of this that in my mind I was ready to just ask them to trach her so she could start being more comfortable.

No 22-month-old baby should have to go through narcotics withdrawal and sedation wean like this.  She had been so loaded up on the fentanyl and Versed over the past two weeks that it just seemed like the methadone and Ativan (which were raised earlier today) just were not covering it.  It absolutely sucked.

Finally, around 5 pm they were able to get her back under control.  Perhaps the Precedex was finally high enough (almost at the max for her weight), I don’t know.  But as of right now, she is only on the Precedex, Ativan, methadone, and as-needed pentobarbital and chloral hydrate — these are all short-acting sedations (meaning they don’t linger in the system).

Oh yeah, and she did get her Cerezyme yesterday, thankfully!  I had to keep reminding the doctors about it.

All I know this “this morning” they are going to try and take the breathing tube out and get her off the ventilation machine.   I am even more terrified about this than I was 10 days ago when we tried it.  Not only do I have the worry about laryngospasms in my head (less so than last week since she was successfully extubated), but now I wonder how she will do off the vent.

By 2-1/2 hours last time, it was clear she had failed extubation and was reintubated.  However, she started showing signs about an hour after having the breathing tube out.  So what will constitute success is, I guess, if she can go 24 hours or so without needed to be reintubated.   Unfortunately, it is not a quick “yes, it worked” situation, but the “no, it did not” would be answered sooner than that.

I want to go back to sleep… I even made myself stay in bed an hour and not come on here just to try.  Ugh…. my stomach is in knots for my baby girl…

Oh, and did I mention the movers are coming up to pack up our house today, Abigail is graduating kindergarten today (and I’m missing it), and Ethan, Daddy, and Abigail (and the two dogs and cat) are leaving for Vegas tomorrow morning?  I had to say my good-byes to them last night here, as they won’t be able to come down tonight.   I can’t believe I’m not going to see them for a few weeks…