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!
Wednesday, January 15, 2014
Sunday, January 5, 2014
|Zadie and Beatrix!|
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!|
Otherwise, Zadie is doing really well, health wise (knocking on wood).
|Letter from insurance company|