PICU Day #8, Out Dang Junk, I say!

Today was an emotional roller coaster.   During rounds today, everyone felt that Hannah was ready to be extubated.  Even though I was nervous about the procedure, I thought she was ready too after being given a few extra days of rest to help “get the junk out.”

Because they were very well educated on what could happen to Gaucher kids upon extubation, they were ready with every possible thing they thought they would need from a crash cart to lidocaine recommended by her ENT with, it must have been about 8 or 10 people there.  I was a nervous, nervous wreck.   As soon as I heard “the tube is out,” I sprinted to the end of her crib.

She extubated very easily!   As soon as I saw them sit her up without the tube, I had a brief glimpse into seeing “my baby girl” coming back.  Within about 20 minutes or so, the sedations had really started wearing off, and she was looking right at me, trying to get on her tummy many times, and was really trying to move around.  She was incredibly weak and shaky, however.   She was unable to put her paci in her mouth, and even when we did, she was so hoarse trying to cough and get used to not having the tube, that she had a hard time keeping the paci in.

About an hour after extubation, I was able to hold her.  I sat in the chair, and the nurse placed her (and all her various IVs and leads) in my lap, cuddled in her blanket Daddy brought from home.   She immediately tried to maneuver herself into her normal position that she does when we are at home and she wants to sleep.  She snuggled right into my chest, and she closed her eyes.  I melted.  I had my baby in my arms, finally.

Unfortunately that did not last long, within about 20 minutes or so, she was starting to have difficulty catching her breath.   Her heart rate started to jump up into the 180s, and her blood pressure was incredibly high at 140/60-something.   She was getting progressively worse in what seemed a very quick time.  They tried giving her a breathing treatment, but that did not help.

At that point, they were considering doing a high-flow nasal cannula (she was on 3 liters of oxygen, and this would bump it up to 6 or so liters) or put her on CPAP.    However, even during that short time they were discussing it, one of her doctors, Dr. Sam (who has seen her almost every day), decided that she was just having too much difficulty and said she needed to be reintubated.

My heart sank.   Daddy and I left the room, and we walked into the hall.  I just lost it.  I don’t know what it is about me and intubation, but these have been the only two times that I really have just fallen apart.    With everything going on in our lives right now (the move, Daddy’s unemployment, Hannah’s health, Ethan and Abigail missing mommy, etc), it just was too overwhelming.

I keep feeling like she needs to be given a break, you know?  We have been dealing with her illness since she was two days old.  TWO days old!  She just turned 22 months old today.  Poor thing just needs a break.

She reintubated fine, and now the plan is to wait a few more days.  She still has a lot of junk in her lungs, so they have started to “cup” her (vibrate her chest with a cup to loosen up the junk in her lungs) every 4 hours plus continue to suction the secretions out.   It is obvious now, that she does not have the cough reflex and/or strength needed to do this on  her own.  Also, she became very acidotic, and even though she was getting the oxygen in her body via the cannula (her O2 sats were great), her body was not able to get the oxygen really into her body.  Her CO2 was 127 (very high), and her pH dropped to 7.02 or something like that (7.35 is lower normal I believe).

I am so sad for her.  She is back to being sedated on the vent.  I am actually more worried now on whether she will be able to get off the vent.  I mean, she could have this pneumonia junk for weeks in there.  Would she have to be sedated and vented that long?   Of course, I keep fearing in the back of my mind that we are getting closer to the trach situation, as this would probably be a prime situation where it would come into necessity.

She just needs a break.   I got to hold her briefly today, and she looked into my eyes.  I want that back again.