Wednesday, July 30, 2014

Sleep study

Zadie had her third sleep study a few weeks ago.  I went with her this time and it was all pretty uneventful, which was nice (unlike her first one, which I went to with her, and her second one, which BJ went to with her because Beatrix was three days old).  I was very nervous leading up to it, since she's 3 now and has tons of attitude and getting her to do anything she doesn't want to do is difficult.  I also thought she'd be upset going to the hospital, getting the hospital bracelet on, etc, after her rough time after the tonsillectomy.  But, she took just about everything in stride.  The tech attaching her leads was great and had the perfect personality and really engaged Zadie.  And the other tech came up with a paper doll book from somewhere which Zadie loved and kept her occupied.  She barely cried at all, in fact!  She started off snoring pretty significantly, but after the tech and I adjusted her position a couple of times, she settled down and had a fairly restful night.  She woke up whimpering a few times, but that was about it.

Waiting to get started

Stacking rolls of tape

New habit...chewing on her finger


Bunny ears

Nasal cannula was the tough part last time...this time the tech told her that since she had the bunny ears, she needed whiskers like a bunny!  It worked!

The tech told her she had to squeeze her nose anytime it itched (rather than rubbing it and possibly messing up the cannula)

The next week, I talked to the nurse from the ENT's office.  She said Dr. Javia was very pleased with the results!  I couldn't believe it!  I never expected her to say that.  She said that her AHI (apnea hypopnea index) was 1.8!  The last study, it was 75!  Unbelievable improvement.  I'm not sure we can thank the tonsillectomy totally for that, but it just might be that all that pain and suffering actually accomplished something for her.  The nurse told me that Dr. Javia wanted Zadie to have a consultation with the doctor from the sleep lab to see if he agreed that the numbers were good enough for decannulation!  I still can't even believe that this conversation is happening.  I'm still trying not to get my hopes up too high, but it's hard not to.  We're going to meet with the pulmonologist tomorrow and we'll see what he says.

Saturday, July 5, 2014

Third trachiversary

Today (July 5) is three years since Zadie had her trach placed. All day yesterday, I kept thinking of July 4th three years ago, when we were woken up by a phone call from Zadie's neonatologist. She had had a rough weekend, having lots of trouble breathing after her Gtube surgery a few days before. The morning of the 4th, the doctors decided she needed to be intubated and because of her tricky airway, they couldn't get the tube in. We had to give permission over the phone for her to be put under general anesthesia (for the second time in just a few days!) in order for them to intubate her. When we got to see her later, it was rough. That was probably the hardest day up to that point. Her little arms were pinned down to the bed so that she couldn't pull the tube out. I felt awful seeing her look at me, like she wanted me to help her.  It was one of the worst days of my life, seeing her like that, and not knowing what was ahead of us.  

July 4, 2011

Once she was intubated, Zadie's neonatologist, Dr. Ruben, was very nervous about her pulling the tube out, since she was a big, full term baby (much different than the preemies she was surrounded by in the NICU).  Seeing an experienced NICU doctor nervous definitely made me nervous!  She told us that day that Zadie needed a tracheostomy.  This was the first time that a trach was even mentioned to us.  It wasn't a suggestion or something to be discussed.  It just what was going to happen, and as fast as possible.  When the surgeon said he didn't have time until two days later, Dr. Ruben pushed him to make time the next day.  

So, on July 5, 2011, at 5 weeks old, Zadie had her trach placed.  It was the first day since the day she was born that she didn't have any tubes or tape on her face.  I had been wishing for it to be gone, but I didn't want it this way.  Still, it was wonderful to see her pretty face and for her to be able to be on her back comfortably (with her breathing issues, she had to be on her side or belly in order for her to breathe properly.)  

July 5, 2011

Fast forward three years, Zadie's a big sister (still working on being gentle), a little sister (annoying her big brother every chance she can get) and does just about everything any other 3 year old does.  Today, she went swimming!  I can't wait until she gets the trach out, but she's doing just fine with it.  Next step...sleep study on Thursday night!  

July 5, 2014