But, now we had the new question of WHY is she aspirating on everything? Off to the ENT we went. We had an appointment at Mott at the end of October with the ENT. Based on her history and a nasal scope he did in the office, he determined that he believes she has something called a laryngeal cleft. He said she'd need a scope under anesthesia because that is the only way to confirm the LC. He said if the LC was confirmed he could do surgery right then to fix it. But, there really aren't any odds to guarantee the issue would be fixed. When I asked if that would correct the problem, he said "maybe." So, then he suggested that instead of doing surgery right then, they could do a collagen injection to "fill in" the gap. A month later she'd have another swallow study done to see if it corrected the problem. If it did, surgery would likely fix the problem permanently. If it did not correct the problem, then surgery likely wouldn't help.
So, we set up a TBA scope with Mott. And that night I went home and did some research on laryngeal clefts. My research showed me that it's a pretty rare congenital abnormality. It also led me to the expert on LCs in the US, a Dr. Robin Cotton down at Cincinnati Children's Hospital. His e-mail was listed on the hospital website, so I took a chance and emailed him asking if he'd give us a second opinion.
He emailed me back less than 24 hours later!! He told me that he'd be more than happy to give us a second opinion, but he would need a video of the scope after it was done at Mott. He also told me there has been a rash of LCs being diagnosed in children who are anatomically normal.
This concerned me. So, I decided that we wouldn't do anything to M until after he weighed in with a second opinion.
The following day, I got a call from Dr. Cotton's nurse. Apparently, Dr. Cotton had decided that he wanted M's case to be presented to the Aerodigestive Team down in Cincinnati on November 6th. I almost fell out of my chair. Finally, we might get some answers for M...from a whole team of doctors in ONE ROOM together. Discussing her. Mind blown. Amazing. Absolutely amazing. But, I had to wait to find out if they were going to accept her case. I was a bundle of nerves all day on the 5th in anticipation. All day on the 6th hoping I'd get a call. And finally by lunch time on the 7th, I just couldn't take it anymore and I called them.
The nurse called me back on Thursday and told me that YES, M's case had been accepted and they had an initial plan in place based on the teams discussion. We'll be going down to Cincinnati for 3-5 days. 3 days for sure, 5 days depending on what they find during her testing. This is what will occur:
Day 1 (Tuesday)
- High Resolution Chest CT
- Video Swallow Study
- Anesthesia Consult
- Meet at shared clinic with the doctors to examine M, answers questions and receive the results of the Chest CT. An MRI of M's brain may be ordered based on the physical exam.
- Triplescope. This is a laryngoscopy, bronchoscopy & endoscopy all at the same time. The laryngoscopy will be what confirms the LC. The bronchoscopy will look at her lung structure and take lung washings to look for aspiration (and what is being aspirated). The encoscopy will look at her digestive system to determine if there is reflux or other issues. If she has reflux and it is uncontrolled, it will destroy an LC repair if one is done.
- pH probe. This will be placed during the scope. It's a probe to test the pH in her digestive system (for reflux). This tube will be inserted through her nose and will have to remain in place after she wakes up.
- Meeting in consultation room with whole team to discuss findings.
- PICU admission. She will be admitted to the PICU for at least 1 day for observation and to keep the pH probe in place.
Day 3 (Thursday)
- FEES Study. A camera will be put in her nose and she will be asked to eat and drink. The camera will watch her swallowing from above the level of the vocal cords.
Days 4-5 (Friday - Monday) will be possible based on how she recovers from the scope and what is found during the testing.
The doctors will then meet again the follow Wednesday (Day 9) and discuss her final plan. I will received a call that Thursday or Friday with the final plan.
Right now we are waiting for a call from the scheduling department at Cincinnati Children's. The plan was sent to scheduling where they have to get a pre-certification from my insurance. Then they will find open spots in the schedule and then call me to "negotiate" dates.
My hope is that this can be done before the end of the year, otherwise we may be delayed with another insurance pre-certification because my insurance will be changing 1/1 (thanks ACA :/ ) The nurse said that scheduling could be anywhere from "next week to a few months."
So, right now we're just waiting to hear from scheduling. I am beyond relieved that they've accepted her case. I really feel like this is a step in the right direction and we might finally be able to get some answers and keep this kid's lungs healthy!
