High Maintenance

Resting peacefully in the CICU

We're learning that our second daughter is a bit high maintenance.  This has becoming more and more apparent as she has settled into life outside of the womb.  Most of the time, she is pretty chill.  She never cries, unless she is hungry.  She also cries when she is put down.  In the last few weeks, she has pretty much demanded to be held all the time.  If she is being held she is happy as a clam.  This is very hard when you're also trying to entertain a toddler.  I used to complain that Hope was not a snuggly child.  Well, I got my due justice.

This is an important fact that had me worried about this hospitalization, and I was right to worry.  She has been equally high maintenance since we arrived at Children's yesterday afternoon and it has already shaped her hospital stay.

We arrived around 3:20.  This was the calmest hospital admission we've ever had.  Our first admission was when Hope was born.  She arrived at Children's by ambulance in the middle of the night.  Our next admission was through the ER with a listless 1 year old with a 104 degree fever.  This time, we showed up with our peacefully sleeping baby, checked in to the admitting office and were sent upstairs.

We checked in at the desk and they sent us down the hall, to room 831,  As we turned the corner to the room, Chris commented that it might be the same room that Hope was in on her first trip to the cardiac step-down unit.  Well, it was,  And it was the same bed space.  Talk about creepy.  I stood at the door for a minute, couldn't bring myself to go in.  You see, this room is a pretty tough space.  It is a corner room, so the window bed has natural light, the bathroom, and a fair amount of space.  The hall bed, our bed, is cramped, to say the least.  Its dark, everyone can see into your room.  There's barely enough room for two chairs.  As we walked down that hall and into that room, I had some serious flashbacks.  This is the room we were in when Hope came down with the bowel infection that ultimately determined she would have surgery at 12 days.

Anyway, we met our nurse, went over admission stuff, and started to settle in.  It was clear they had been waiting for us - lots of nurses and doctors came in and it was pretty busy.  We had consent forms to sign, history to go over, chest x-rays to be done, etc.  She smiled at all of the nurses and put on a show, charming them all. They struggled to find good O2 levels and when they did, they were a lot lower than we anticipated.  They were hovering in the 60s and she was definitely a bit blue.  I had thought she looked blue on Saturday and even went so far as to email her cardiologist to ask him if we should do anything.  I felt a little crazy doing that, but it seems I was right to be worried about it.  A mother's gut feelings are not to be ignored.  All of this confirms that this surgery is perfectly timed.
Around 6, we finally had her settled and asleep, so we decided to go grab some dinner.  When we got back, things were busy in our room.  Apparently, Mireya woke up 10-15 minutes after we left and freaked out because she was no longer being held and we were nowhere to be seen,  She desatted and they decided it was time for oxygen,  What we didn't know is that she desatted so bad that she required morphine to settle her down.  

Needing a little extra support

This morning we got up early to try to get in to the hospital before she was taken down to the cath lab. Just as we were getting ready to leave, we got the call telling us she had been bumped up to the first case and was on her way down.  So instead of heading right in, I decided to go for a run and Chris got some work done.  We got in around 10, and by 10:30, she was ready for us to come back.  The cath had gone well and confirmed much of what we saw on the CT scan.  She has 3 major collaterals.  This cath will help guide them on Wednesday.  The plan is to go in and place the conduit between the heart and lungs.  They will be able to see the collaterals a little bit better and determine what collaterals need to be kept and which ones can be gotten rid of.

We spent the rest of the morning in the recovery room waiting for her to wake up and be able to be weaned from oxygen.  How much oxygen she required would determine where she would go from recovery.  2L would require a trip to the CICU, 1L or less would send us to the step-down unit.  By 2:00. we had her off oxygen and on room air, so we were going back to room 831.  They put her back on oxygen to take her up.  When we got up there, lots of people came to check on her.  She was hungry, so we fed her.  After she ate, the nurse practitioner came to examine her and we noticed her belly was all bloated.  It was rock hard and all distended.  It looked incredibly uncomfortable, but she was calm as can be.  They decided to do a chest xray to see what was going on.  That did not go over well but showed us that there was nothing to worry about.  Then they needed some blood.  She was quite perturbed and unhappy by the situation.  Her sats were all over the place. They did not like this on the step-down unit, and decided it was time to get rid of her.

Out of the cath lab and a little swollen

So she is now resting in CICU.  By the time we got there, she had calmed down and her sats were in the 80s.  The CICU nurse didn't really think she needed to be there.  It didn't really bother us that we had been moved over.  Now we have a really nice private room and a nurse watching her like a hawk. And our high maintenance child is finally resting peacefully.    

Resting peacefully in the CICU