Monday, June 24, 2013

Sleep Study Number Six

Nolan had his follow-up sleep study from his revision supraglottoplasty last night. I am absolutely exhausted, so this post may be a complete jumble of incoherent mumbling. Fair warning.

We arrived at Buffalo Children's for the hook-up at 8:00 pm. The children's hospital is much better than the alternate sites because the tech is familiar with children and all of the equipment is properly sized. They also perform CO2 monitoring at the children's hospital and do not perform this test at the alternate sites.

Nolan was a champ with the hook-up. He's so used to the process that he didn't blink an eye.

The only part of the process that he hates is the nasal cannula. He couldn't remember what it was called and kept telling us that he "hated that mustache!" He turned the volume up to maximum on the TV speaker and watched some Sesame Street.

The same episode plays in a loop, so our wonderful respiratory technician brought in a DVD player with Toy Story. Nolan was quite happy with the arrangement, particularly when she rearranged his head wrap so he could put his hearing aids back in.

He fussed a little when the movie was over, and asked us to take his "mustache" off several times. He finally fell asleep, but not for long, He cried out frequently, but the tech came in and told me it was during stage 3 sleep. His legs moved all the time, waking him from sleep. I heard a few apneas, but I am not sure if they were central (some centrals are normal) or if they were obstructive apneas.

With the constant thrashing and crying out, I did not sleep at all. At 5:00 am, the lights came on.

We woke Nolan up. Well, we sort of woke him up. He was in a zombie-state for quite some time.

We left the hospital and drove 2 hours to our house. Nolan fell asleep on the way home, so he got a little more sleep in the car. I am beyond exhausted.

Tomorrow, we get up at 4:00 am to take Matt to the hospital for his supraglottoplasty.

At least we're never bored.

Thursday, June 13, 2013

Ehlers Danlos Support Groups and Resources

This post is mostly for my own benefit, as I have been searching for EDS support groups online. I just want to link to them here, so I don't lose them!

I found one group for parents of children with Ehlers-Danlos Syndrome:

Ehlers-Danlos Syndrome: Parent Group

There is another Facebook Group for the Ehlers-Danlos National Foundation (EDNF), and the main website for the organization.

I also found an interesting article on the genetics behind Ehlers-Danlos Syndrome - The European Journal of Human Genetics has the article here.

I still can't find much in the way of severe hearing loss and its relation to EDS. It isn't a common issue to have with the syndrome - it is possible, but very rare.

I have been trying to find cases of EDS similar to Nolan, and have found a few cases that have his gastrointestinal problems. The gastroparesis and cyclic vomiting are Nolan's biggest hurdles in the GI world at the moment, though he is gaining weight and growing with his night feeds.

We will have to make some decisions about Nolan's participation in certain sports as he gets older. For now, we are letting him continue with soccer since he 1) loves it and 2) the sport is gentle in the younger leagues. In the U-6 league, there is a lot of chasing the ball and not a lot of contact between players. He will start swimming lessons on July 8, and hopefully he will take to it like he did last year. Swimming is a good activity for kids with EDS.

With that said, we are heading out in the disgusting drizzle for Nolan's soccer practice. We are not sure where summer is, but we'd like the sun to return to Western NY!

Wednesday, June 12, 2013

New Ear Molds

Nolan was in desperate need of new ear molds. We picked them up last week - he went for the green-and-blue look this time.

Next week is the last week of school, and we are eagerly counting down the days! Both boys have their class field trips on Friday (Nolan is going to a local playground with his class, and Matthew is going to the Erie Zoo).

I have to admit, I am looking forward to summer. It will be nice to get a break from the early morning routine!

Tuesday, June 11, 2013

Matt's Surgery Scheduled

We have been so busy that I haven't had time to write. Baseball, soccer, doctor appointments, school events and projects, and piano recitals have kept us overwhelmed with activities! June is a crazy month.

Matt had his ENT follow-up for his tonsillectomy and adenoidectomy (T&A) surgery. He still has very obvious signs of sleep apnea. Since our ENT did the scope at the time of his T&A and found the laryngomalacia, we know that the obstruction is not going to go away without help.

Matt received a once-over and he is not hyperflexible like Nolan is, so he probably does not have Ehlers Danlos Syndrome. His reflux, laryngomalacia, and constipation issues are likely coincidental. This is good news, as he should heal well and not have a recurrence of the laryngomalacia once surgery is complete. He will remain on anti-reflux medication indefinitely.

Matt's supraglottoplasty has been scheduled for June 25. They will laser out the floppy arytenoid folds so that he can breathe freely at night (if you have no idea what a supraglottoplasty or laryngomalacia are, then read more about it here and here).

Fortunately, my mom is flying out to care for Nolan while we are in the hospital with Matt. We need someone who can take care of his g-tube and give him Zofran (if needed) while we aren't at home. I am grateful for the help, as our only other option is to have one parent at the hospital and one at home with Nolan.

Nolan also has new earmolds, but I'll share those in another post.