Sometimes being a parent is really, really hard. This has been one of those times. It's a hard job being responsible for the life of a little person, a helpless little person who can't make decisions for themselves. It's a struggle to know you're making the right ones for this little person. There's also a lot to be said for a "parent's intuition". Which brings me to our dilemma with the ENT visit...
Just to recap -- it all began with the swallowing issues Leo had from birth. Then it was worsened by the reflux within the first two weeks of his life. Which then led to the choking when he refluxed, which ended up awarding him the grand prize of the heart/apnea monitor. If you've been following Leo's blog so far, you know he's been adorning the heart/apnea monitor for several months now. It was by chance through this little segway of his journey, a bigger issue was discovered -- Leo has apnea with bradycardia. In other previous updates, I've talked about the big sleep study which revealed obstructive apnea and his pediatrician's concern of a "floppy airway". Okay, so now that we're all up to speed, here's the update on the ENT (ear nose and throat) visit....
Ten days ago, Leo had a first visit to the ENT. We were somewhat prepared for the possibility of surgery being recommended for a "floppy airway"; however, most of the way the actual visit went we were NOT prepared for. We didn't expect Leo to be herded in, quickly checked over, and then handed a list of surgical procedures (5 to be exact...) that he would be scheduled for within the next two to four weeks... with little to no explanation as to why these recommendations were being made so abruptly. We asked many questions and felt as if they were only answered halfway. We left the appointment feeling a bit shell-shocked and completely uneasy.
That's really no way to enter scheduling a surgery - a FIRST surgery - for your five month old baby, now is it? This wouldn't be an outpatient surgery. Oh no, it would require at least one night in ICU, plus another two nights as an inpatient. With our questions still lingering, we honestly couldn't imagine this ENT doctor being the one to hold our hand through the process.
Instead, with the help of a close friend and her wonderful network of people, we were able to get an appointment very quickly to see another ENT specialist for a second opinion. First and foremost, we wanted to make sure all of the procedures being recommended for Leo are really needed at this point in time and safe for him at this age. Second of all, we were searching for someone who would feel like the right fit when it comes to communicating with our family.
So yesterday, with a pending surgery date looming for September 14th with ENT #1, Leo saw ENT #2 -- Dr. Mitchell at Children's Medical Center in Dallas. Even before he shared his recommendations, we found him to be a perfect fit. Maybe it was that he asked questions that were not addressed by the first ENT; maybe it was that he suggested some risks that were not previously addressed, or maybe... just maybe, it was (after Dr. Mitchell left the room to take a call from another physician regarding another urgent patient)that his nurse said "you know, you've come to the expert for your son's care. You can Google him and see he's written paper after paper about children with obstructive apnea who also have down syndrome." Little did she know, I already had!
First, Dr. Mitchell performed a nasal endoscopy to take a look at Leo's throat, airway, tonsils and adenoids. This was done by placing a small tubing (the size of a feeding tube, with a light and tiny camera on the end for viewing) into Leo's nose, and feeding it down through his throat. Not much fun for Leo, even less fun for Mom, but we got the job done! From this view he could immediately see no problem with his airway. Hooray - because based on this we were already minus one surgical procedure! He could see a lot of redness and inflammation from the reflux, which we thought was pretty well controlled but apparently the acid is still a real problem.
Leo's tonsils and adenoids are both large for his age. They don't even begin to peak in size until closer to age two, and they are the culprits of the obstruction and apnea. Dr. Mitchell's first theory is that the reflux is contributing to enlargement of the tonsils and adenoids. If his reflux is treated more aggressively, this may help things calm down without removing them right now. Since Leo's apnea is considered moderate (about 12 apnea events per hour during the sleep study), right now it's safe to wait a few months to give him time to grow - which could also help make the apnea less severe.
Even though Leo has no major heart defects from his trisomy 21, Dr. Mitchell explained that surgery should always be the final option for a child with Down Syndrome because of the potential for new cardiac complications due to anesthesia (something that wasn't suggested at the first ENT visit). He recommended that he be cleared by Cardiology prior to any surgery (also not previously mentioned). Can you see a trend here that may have supported our parental instincts?
The only bad news -- there's no guarantee that the bradycardia will go away with the apnea decreasing or going away. So regardless of surgery, there's no guarantee as to when we can ditch the heart/apnea monitor. It will still be a "wait and see" kind of deal.
Our final decision regarding the ENT recommendations? ....We will wait until December to make a decision. Leo will go back to his GI doctor this week to find a more aggressive plan for treating the reflux. Then in December, as long as his symptoms don't worsen, Dr. Mitchell will take another look at him through nasal endoscopy and probably another sleep study. If Leo is the same, or worse, then he will proceed with removing tonsils and adenoids at that time. He'll get a bonus of ear tubes (as most kids with DS eventually need them), and also have an ABR (auditory brainstem response - a specialized hearing test that is done while he is sedated, as most children with DS have adverse effects in hearing).
At the end of the day, it sure is good to have a resolution. It's even better to feel totally at peace with it! In the big picture, we know this is a minor decision compared to what some of our little friends with DS have been through. But this was our biggest decision to date.
Thank you for your thoughts and prayers for Leo, each and every day of his life.