PICU, Day #23, Guilt

Dr. Albright did Hannah’s trach change very early this morning, even before I came down!  According to the night nurse (who was still on), everything went great, the stoma (hole) site looks clean, and she now has a regular trach collar on.

So during rounds today, it was decided that they were going to work on stopping the paralytic (rocuronium) today first.  So they halved her IV drip for about 7 hours, and then they cut it completely around 4:30 pm this afternoon.  Truthfully, by the time they halved it, she was already moving around quite a bit.  Sadly, she needed a bit more sedation because of this (her heart rate would start going into the 140s and 150s because she was so agitated).

I asked at rounds today if I could hold Hannah now that she had her trach change.  The fellow did not think it was a good idea until Hannah was off the paralytics, but her attending overrode that and said “absolutely.”  I was so nervously excited!  It had been more than 3 weeks since I held her.

As soon as rounds were over, the nurse asked me, “Are you ready?”  “Yes, Yes, Yes!”   It took 3 people to move her from the crib to the chair I was in about 2 feet away from the crib because they had to disconnect her IVs, leads, feeds, and then move her with the Foley catheter and vent.  It was such an undertaking getting her to me.  It must have taken about 10 minutes.  But they were happily willing to do it for us.

She laid in my arms, and she was wrestling about.  Uncontrollable, spastic type of movements.  She never really looked at me or noticed me.  Her nurse says that now that the paralytic is wearing off, she is wanting to move her body, but it is going to take her a few days to really get it out of her system and can control her movements.

I feel horribly guilty for admitting this, but it was not a comfortable and heartwarming experience as I had hoped.  She laid on me, shaking about, not even realizing it was me.  I was holding onto the vent tubes in order to keep them perfectly in line with her chin with one hand and trying to keep her legs from kicking around so much that she would fall off.   She never looked comfortable in my arms at all.

The whole time I held her, I was overwhelmed by feelings of guilt and discomfort.   Guilt because I knew she was not comfortable – not just with her sitting on me but overall.  Guilt because I wanted them to put her back in the crib after 30 minutes because I felt like she was just not safe in my arms with all the equipment attached to her while she was thrashing around.  Guilt because I wish she would recognize me and realize that I was there to comfort her.  Guilt because she has been in this state for more almost a month now, and I really can do nothing to help her but just sit there and hold her hand and rub her head and legs.

Later in the afternoon, the nurse asked me if I wanted to hold her again, and I just said “not right now.”   I felt like such a horrible mom for not wanting to hold her baby, especially after wanting to do it for so long.   I just kept picturing her squirming uncontrollably in my arms and trying so hard not to let her fall out of my lap or disconnect from the vent, not having a good grip because she was attached to so many different things.

Hopefully tomorrow, they will remove her Foley catheter that was put in during surgery since she is off the paralytics now.  Tomorrow, the plan is to start the weaning process from the sedatives.  Seeing how active she was while sedated when just getting off the paralytics was rough – I can’t see how the heck she is going to be able to get weaned off the sedatives without even being more agitated.

But I will do exactly what I have been doing.  Be right there by her side, caressing her face, holding her hand, kissing her nose and forehead (since I can’t reach her lips because of the dang vent), and just letting her know I am there.   My hope (based on the long-term plan from rounds) is that she can get off the vent in a few days.