TURBULENCE
Priya's first flight went smoothly. I had spent two months prior worrying about the potential for disaster of flying alone with her to Montana, but she was an amazing travel partner! We had a great time! She got loads of attention when we got there, met her great-granddad, cousins, and Uncle Craig, went shopping, watched her cousin play volleyball, went to kindergarten to see her aunt's class, visited her grandparents at their workplaces, and pet a a teeny, tiny puppy.
Unfortunately, the turbulence hit when we arrived home and met Priya's ENT doctor to go over the results of her sleep study--NOT GOOD! We honestly thought going into the sleep study that it was just a formality prior to her cleft surgery. Boy, were we wrong! The doctor was very concerned over the results. She failed the study and failed it miserably. She stopped breathing over 150 times, and her oxygen saturation went as low as 80% at least 30 times--if I remember correctly; almost everything he said went out the door the moment he mentioned Priya would likely need a tracheotomy. He diagnosed her with severe obstructive sleep apnea and thought she needed a tracheotomy and tongue reduction prior to her cleft palate surgery. The tracheotomy would be a way to bypass her large tongue that falls back and obstructs her airway at night. The doctor did say we can try a CPAP to force oxygen into her airway at night, but most children don't usually tolerate it well, and he isn't hopeful it will be a solution for her. He told us he hopes she proves him wrong. I asked him about a nasal trumpet like she had towards the end of her NICU stay which is a tube inserted into one side of her nose that bypasses her tongue through one nostril, which he admitted could be an option, but likely not a good long-term fix, as older babies don't tolerate them well and like to pull them out. The type of tongue reduction her ENT suggested she needs (base of tongue ablation) involves a lot of post-op swelling and also affects the muscles that assist in swallowing. Even if other avenues to control sleep apnea worked for now, he would want a tracheotomy before doing a tongue reduction. We have a STAT CPAP trial/evaluation first thing Monday morning. We are hoping above all hopes that the CPAP works. If not, a tongue reduction, she will have a tracheotomy by mid-November at the latest, a tongue reduction at the end of December or early January, and her cleft palate repair around her first birthday. Not the best year of firsts for my sweet girl!
UPDATE: I love Priya's pulmonologist! He wants to hold off on CPAP and try having her sleep prone (on tummy) on a resQ wedge with a pulse ox first. Ordering her oxygen to be used if her O2 drops below 90. Will see her in two weeks and may reorder a different type sleep study. He said her nasal pathway is irritated and swollen ( from eating solids with large cleft palate) and seems to be obstructing air also (besides large tongue) and wants to treat that first. She also has another ear infection, but that's nothing new. He didn't even discuss potential for trach at this time except he wants to avoid. Relief!!! He disagrees with doing base of tongue ablation because results are poor and it's a horrible procedure!
UPDATE II: Our first night with the pulse ox and O2 went awesome! Priya slept MOST of the night on her belly, and her oxygen dropped to 94% only once. The rest of the night, her oxygen saturation was 98-100%.
They say it takes a village to raise a child. For us, it takes 10 specialists. Fortunately, though, that has been reduced by one after today. Priya had an appointment with her allergist this afternoon, and it looks like we will no longer be needing her services. This is good news for both Butch and Kitt--even dairy--but may not be so good for Priya's tonsils, as this means they are likely enlarged due to organomegaly secondary to BWS and not an allergy. This means that if they cause too much trouble with breathing and sleeping, they will have to be removed. Time will tell.
.jpg)
Unfortunately, the turbulence hit when we arrived home and met Priya's ENT doctor to go over the results of her sleep study--NOT GOOD! We honestly thought going into the sleep study that it was just a formality prior to her cleft surgery. Boy, were we wrong! The doctor was very concerned over the results. She failed the study and failed it miserably. She stopped breathing over 150 times, and her oxygen saturation went as low as 80% at least 30 times--if I remember correctly; almost everything he said went out the door the moment he mentioned Priya would likely need a tracheotomy. He diagnosed her with severe obstructive sleep apnea and thought she needed a tracheotomy and tongue reduction prior to her cleft palate surgery. The tracheotomy would be a way to bypass her large tongue that falls back and obstructs her airway at night. The doctor did say we can try a CPAP to force oxygen into her airway at night, but most children don't usually tolerate it well, and he isn't hopeful it will be a solution for her. He told us he hopes she proves him wrong. I asked him about a nasal trumpet like she had towards the end of her NICU stay which is a tube inserted into one side of her nose that bypasses her tongue through one nostril, which he admitted could be an option, but likely not a good long-term fix, as older babies don't tolerate them well and like to pull them out. The type of tongue reduction her ENT suggested she needs (base of tongue ablation) involves a lot of post-op swelling and also affects the muscles that assist in swallowing. Even if other avenues to control sleep apnea worked for now, he would want a tracheotomy before doing a tongue reduction. We have a STAT CPAP trial/evaluation first thing Monday morning. We are hoping above all hopes that the CPAP works. If not, a tongue reduction, she will have a tracheotomy by mid-November at the latest, a tongue reduction at the end of December or early January, and her cleft palate repair around her first birthday. Not the best year of firsts for my sweet girl!
