ENT visit

This past Monday, we took Zadie to see her ENT, Dr. Javia.  Since she had failed her sleep study so horribly, we went to see what the next steps would be.  Unfortunately, Dr. Javia doesn't really know WHY she failed the study so badly.  It could be hypotonia of the base of her tongue/upper airway, so that it falls back and partially blocks her airway while she's sleeping.  There is a possibility of more granulation or scar tissue since the adenoidectomy in September.

So Zadie will be having a sleep endoscopy and a bronchoscopy in March.  The sleep endoscopy is similar to a bronchoscopy in that they're looking at her airway, but from what I understand, the anesthesia is a little different so that it mimics sleep so that they can see what is going on inside when she's sleeping.  If they find any scar tissue, they can take it out then.  If nothing needs to be done, she should be able to go home that day.

Unfortunately, if it's the hypotonia, nothing surgically can be done and we would just need to wait for her to grow out of it.  And there is no way to know how long it would take for her to outgrow it.

Meanwhile, we are waiting to hear from the insurance company about her nursing hours.  The ENT's office sent the company the notes from this week's visit.  Since there are no plans for decannulation at this time, I am hoping that we will be able to keep at least some of our hours.

On another note, we saw a few other trached kids in the waiting room.  And we met a little girl (not trached) with PRS!

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!