Since Zadie's last sleep study showed some central apnea (the first time in her life that central apnea has been even mentioned), the doctor wanted her to have an MRI of her brain to make sure there were no issues there that would possibly cause central apnea. Being that she has a trach, she would have to be under general anesthesia for the MRI. And because she'd already be under, they decided to do an MRI of her spine as well.
When we arrived for her MRI, they asked several questions about any implants or devices. The trach Zadie normally wears, a Bivona, has metal in it, so that can not be worn in an MRI. I was aware of this and had brought a back up in a different brand, Shiley, which is made of only plastic. They also asked about the ear tubes Zadie has had since she was 11 months old. Those tubes were put in during her cleft palate repair at St. Joe's Hospital in NJ, not at CHOP. Apparently, some ear tubes have metal components in them, and no one thought to ask ahead of time for the operative report to confirm that there was no metal in them. So, CHOP had to contact St. Joe's and send over a release signed by me to get the operative report. That was really frustrating, but only turned out to be an hour or two delay. She was in the MRI for about two hours, and was pretty cranky when she woke up. Some positive feedback I received right away from the anesthesiologist was that he didn't see any apneas while she was under anesthesia. He had mentioned ahead of time that if there were any apneas while she was under, there was a possibility of her having to stay overnight. Thankfully, we avoided that.
Since we had the MRI on Friday and a follow up appointment with a pulmonologist on the following Monday, both in the Philly area, we decided to make a weekend out of it and drove out to Lancaster, PA. Zadie was really hungry and thirsty when she woke up, and she drank juice and ate a bunch of cheez its, and it probably was a little too much too fast and she puked all over herself in the car. But, that seemed to be the only ill effect of the day.
We had a great weekend in Lancaster, and woke up early on Monday to be back for the appointment with the pulmonologist. Right after we left, I got a phone call from the sleep doctor's office with the results of the MRI. They were normal, thankfully! I mentioned to the woman that we had an appointment for a follow up with the pulmonologist and she checked the doctor's schedule and said we didn't have an appointment. I had a funny feeling that was the case, since I hadn't received a confirmation call. So, instead of going to an appointment, we had a fun last day of our trip and spent the day in Hershey.
We were able to schedule the follow up appointment with a doctor in New Jersey, and we're going to that tomorrow. The ENT's office wants the pulmonologist to look at the results of the sleep study and make a recommendation for further steps. Since her O2 levels were low for part of the study, the pulmonologist might just want her to be on some nebulizer treatments on a regular basis to open up her lungs. Then we'll have another appointment with the ENT at CHOP in October.
Dr. Javia does not decannulate in cold and flu season, and since we will next see him in October, I've accepted the fact that Zadie will have her trach for another winter. This enterovirus that's in the news right now is a bit scary and all the more reason to keep the trach for now.