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

Happy!

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.

Zadie is a big sister! And other updates...

Zadie and Beatrix!

It's a while since I posted anything.  The big news in our house is the arrival of Beatrix Rose, Zadie's little sister!  Zadie really, really loves her and always wants to help with her.  Obviously, having Beatrix has made things a little more interesting around here.

A few days after Beatrix was born, Zadie went to Philly with her daddy to have her follow up sleep study.  Since she did badly on the one in July, her ENT, Dr. Javia, suggested we remove her adenoids.  He was hoping that they were the cause of her apnea.  We were hoping that the follow up sleep study would be improved enough that decannulation would be a real possibility.  Unfortunately, less than an hour into the study, the technician removed Zadie's cap.  From then on, she was sleeping as she does at home, with the trach open, and therefore not really getting any benefit out of the study.  It was pretty discouraging, since there was no point in being there any longer, but they stuck out the night (Zadie was sleeping already anyway).  We held out some hope for a positive result, but when I talked to the nurse a couple of days later, she told me that the results were much worse than the results from July!  The apnea hypopnea index (AHI), which is the number of recorded apneas or hypopneas per hour, was 12 in July and 75 in November!  The link I provided has a different measure of what is severe from what CHOP considers severe, but on either scale, 75 is severe.  And that's why they took the cap off.

No like sleep studies!

I don't know why it was so much worse.  She was a little congested, but not enough that we thought we should reschedule.  I really wonder if there were any errors made in setting up, but there's no way to know.  We will be heading down to see the ENT again; he wants to look at her airway in the office and then decide the next step - maybe another bronchoscopy or maybe another sleep study.  Neither is a really easy option.  Zadie would be put under for the bronchoscopy and sleep studies are really miserable, so I feel really bad she has to go through either (or both) again.  And, since Dr. Javia is at CHOP, it's a two hour drive to do anything.

Otherwise, Zadie is doing really well, health wise (knocking on wood).

Letter from insurance company

This past week, we were informed that our insurance denied Zadie's nursing hours (again).  Again, they said that Zadie's care was purely custodial, meaning basically babysitting, which is outrageous considering we can't leave her with just anyone.  Dr. Javia's office at CHOP took the first step in appealing with the peer-to-peer review.  They spoke to the medical director at the insurance company, but they still denied the hours.  The ENT's office then filed an expedited appeal on our behalf (they were really proactive about it, which I appreciate!) and the insurance company was supposed to give an answer by this past Friday.  Instead of an answer, they reinstated the nursing hours temporarily while the appeal went to medical review.  So, for now, Zadie has her nurses back.  I still haven't gotten the official denial letter from the insurance company.  The only correspondence I've seen from them is a really poorly written fax that was sent to the nursing agency.  It's kind of mind boggling how someone who apparently doesn't know the word tracheostomy (instead, it's referred to as a "tube in her neck for breathing") can determine whether anything is medically necessary!