Saturday, August 20, 2011

Enjoying the Rest of Summer

Nolan with a beefsteak tomato

I received Nolan's "Hello" letter from his new teacher in the mail. There are less than two full weeks of summer left - the time of playing in the warm sunshine is quickly coming to an end!

Since the week after school starts brings an onslaught of doctor appointments (sleep clinic, ophthalmology, and the Cleveland Clinic in a four-day span of time), we are making the most of our summer days. We went to a local pool yesterday, we're going to playgrounds this weekend, and next week will be spent slip-and-sliding, playing, and otherwise participating in non-educational fun. Summers are entirely too short.

As a side note, the new CPap mask is marvelous, but Nolan still won't keep it on all night. He wakes up crying, because the air is hurting his nose. Or the air is leaking into his eyes. In the middle of the night, we are bleary eyed and exhausted, trying to fix the air leaks and the hurt nose. Part of the problem is the chronic congestion Nolan gets from the reflux. Part of the problem is a flat nasal bridge. Part of the problem is trying to stick a confining mask onto a tiny child, who cannot really understand the implications of not wearing it (the only other way to fix the apnea is a fundoplication followed by a revision supraglottoplasty - something we are trying to avoid).

In the meantime, we are stumbling around like zombies from lack of sleep. We've never really gotten a full night's worth of sleep since Nolan was born, but at least we learned to sleep through him crawling around our bed at 2:00am. With the CPap mask in place, we repeatedly get up and go into his room to adjust it.

I am on the hunt for a full-face C-Pap mask for kids. That may solve his congestion issue, because the air pressure could be delivered through his nose and mouth while he sleeps. The other option is to put him in a bassinet next to our bed, so that we can take care of him without having to get up multiple times during the night.

Anyone who has been-there-done-that, what have you done to keep the mask on your child through the night? We need some tips!


TheSweetOne said...

Haven't been there from the cpap perspective but did have a toddler who, after weeks of coming in multiple times in the middle of the night, ended up sleeping on the floor in our room. Eventually we used a mini futon (about the size of a toddler bed) for him to sleep on beside our bed. We all slept better - at least until Lauren was born and, well, we haven't had a good sleep since but you know how that story goes! ; )

Thankfully, co-sleeping as necessary with Lauren does the trick for now... I'm still up lots in the night but at least I don't have to get OUT of bed.

I think the bassinet / futon idea might help, a least to give you a bit more time in your own bed even if it is still interrupted.

Kyla said...

Our summer is over this week! I'm not ready to be back in class...or send the kids back! Enjoy what you've got left!

When BubTar was a tot, we put his toddler bed in our room so he'd have somewhere to sleep when he wandered in at night. Something like that might help you guys not lose quite as much sleep!

Magic Ear Kids said...

Ugh! I can't imagine having to trouble shoot through the sleep deprivation. I hope you get some good tips!

rouchi said...

Sleep deprivation!!! I totally empathize with you,one's day gets totally out of gear without the night's rest.Hope someone drops by and gives you the best bestest solutions!

leah said...

He made it until 2:00am last night. We're so tired we can hardly think! It will get easier with time - but this is certainly tough right now. His lungs were really "rattly" this morning as well. Not sure if the CPap is causing that, or if he is just a bit gunky.

Co-sleeping might become necessary - at least for now!

xraevision said...

I completely empathize with you about the lack of sleep. My husband thinks that X's respiratory issues don't require co-sleeping anymore, but I just can't relax when I'm across the hall, especially now that his reflux is acting up again. We finally bought X his permanent big boy bed, and we purposefully choose a double. It suits X and I just fine to sleep together for the time being. As much as other people may not understand co-sleeping, we all have to do what works! Mommies need sleep too!!!