Saturday, August 31, 2013

Matt's Sleep Study Results (Post Supraglottoplasty)

Matt's follow-up appointment wasn't until October 28 with the ENT - I figured if there was any "negative" news, we'd find out soon enough.

The ENT's office called and said his apnea is unchanged despite doing a tonsillectomy and adenoidectomy and a supraglottoplasty. They re-booked his appointment for September 22 to re-evaluate his case.

I don't have an official report yet, but the short summary is this:

The bad news: Matt still has moderate/severe sleep apnea.
The good news: I didn't throw out the C-Pap machine!

At least Nolan's apnea is under control for the time being, so we can focus on getting Matt's under control.

Sunday, August 11, 2013

Matt's Sleep Study: Post-Supraglottoplasty

I was happy to get a sleep study booked for Friday night - this meant that I would be able to sleep on Saturday during the day, since Dennis would be home to watch the boys. I drove Matthew up to Buffalo Children's and we were ushered into the waiting room just as the sun was starting to set.

The sleep study tech was not quite ready for us, so she sent us to the playroom. Matthew was happy to play with the toys. I, however, was not happy that someone had changed the channel on the waiting room television to play Bones. This television show is definitely not for children, and Matthew was rapt with attention as they showed a half-rotted corpse on the show. I finally found a power button on the side of the TV. Matt went back to playing with his pirates. I was not happy.

We were finally ushered into a room and Matt changed into his pajamas. Matt played on the Kindle Fire with the Bad Piggies game, using it to test out several rocket designs. Sleep studies are much easier at this age, as the kiddos can entertain themselves!

At 9:30, hook-up started. By 10:00, Matt was settled in bed and I was reading a chapter of Harry Potter and the Sorcerer's Stone. He wasn't happy about the nasal cannula, but left it alone. He's actually giggling in the picture below - I was worried it would take him a long time to fall asleep.

Fortunately, he fell asleep almost as soon as I turned the lights out. He stayed asleep until 2:30 am, when he woke briefly and said, "I think it is dusk outside," then immediately fell back to sleep. I managed to get about an hour of sleep, which is much better than getting no sleep at all. At least I would be somewhat coherent on my drive back to Jamestown.

The lights came on at 5:00 am, and we grabbed some Tim Horton's donuts (and a coffee for me). We were home by 7:30 am. I thought I would nap during the day, but I have a hard time sleeping during daytime hours. Matt and I both had early bedtimes that night, though!

I won't get the results from Matthew's sleep study until October 28, which is when we have our follow-up appointment with the ENT. Hopefully his sleep apnea is gone!

Wednesday, August 7, 2013

Nolan's Sleep Study Results

Nolan's sleep study was an exhausting, sleepless ordeal in late June. He woke frequently and cried. His legs bothered him a lot, and it was obvious from the sleep study report that he has difficulty with periodic leg movements and frequent arousals. He also has moments of bradycardia where his heart rate drops well below 40 beats per minute - this was observed in the PICU when he had his supraglottoplasty as well. He is fine during the day, so it is probably fine - but we will bring it up with his pediatric rheumatologist when we see her in September (along with the leg issues). Dysautonomia occurs with children who have Ehlers Danlos, so it is possible he isn't regulating his heart rate well. Better safe than sorry where the heart is concerned!

On the other hand, we received some fantastic, out-of-this-world news. His second supraglottoplasty/epiglottopexy actually worked. His apnea is now in the mild range for the pediatric age group. This means that we do not have to use C-Pap for the time being. He will have another sleep study next year, as he is high risk for the apnea to return with his connective tissue disorder. We are absolutely thrilled that we do not have to cart around a C-Pap machine and he is getting the oxygen he needs to grow.

So, goodbye C-Pap machine. We won't miss you.

Tuesday, August 6, 2013

Still Here - Playing Catch-Up and Matt's Supraglottoplasty

I have been absent from the bloggy world. I have a good excuse. We had four - count them, four - surgeries this past spring. Two for Matthew and two for Nolan.

First was Nolan's attempted supraglottoplasty in February, which couldn't be completed because he had funny, white exudate all throughout his airway. He had to be woken up from general anesthesia and we were sent home. The cultures were normal, so this mystery was never explained.

Second was Matt's tonsillectomy and adenoidectomy in March. An outpatient surgery with 8 long days of recovery.

Third was Nolan's supraglottoplasty and 3 day stay in the PICU in April. He was intubated on a ventilator for 2 days.

Fourth was Matthew's supraglottoplasty and overnight stay in the PICU for observation on June 25, 2013.

Honestly, I plead exhaustion. It was simply a ridiculously exhausting spring.

Matthew's surgery went very well. Nolan's genetic syndrome (Ehlers Danlos) wreaks havoc on his tiny body, and it is much more evident when comparing the boys' surgery recoveries. Nolan was in a lot of pain and had a lot of trouble swallowing and required ventilation assistance after surgery. Matthew cried for an hour after surgery, then demanded French toast and a cheeseburger.

Unfortunately, he was only allowed clear liquids for the rest of the day. The morning, however, brought French toast and an ecstatic Matt. "Mommy, this is the goodest breakfast ever!"

Matt's recovery was ridiculously easy. He didn't have to take any pain medication after the first day in the hospital. We went home 24 hours after the operation. 48 hours after his surgery, he was playing in his baseball team's championship game. They got second place.

Seriously. This is Matthew 48 hours after surgery. His recovery was insanely easy. It was nice to have things go so smoothly!

We have a sleep study on August 9, 2013 (this coming Friday) to determine if he still has sleep apnea. I certainly hope his apnea is gone!