Friday, June 03, 2011

Pulling Weeds: Sleep Study Report

Three days ago I was weeding a flower bed (is it still called a flower bed if there aren't any flowers?). Sam asked to help. I instructed him on how to pull up a weed by its roots in order to keep it from growing back. He got the hang of it pretty quickly.

Last month we were told numerous times by numerous doctors "not to attempt behavior modification" until we can uncover the medical problems prompting the night wakings. Trying new tactics to get Sam to sleep would be like snapping off a weed without getting at the root. It would be futile. 

Well, folks, we identified the root and we officially started weeding. We found out today that in addition to asthma Sam has unusually high levels of carbon dioxide when he sleeps. This can be caused by a number of things. Thankfully, all of the scary culprits have been ruled out. There's a good chance the extra carbon dioxide is a result of his adenoids getting in the way. We'll meet with the ENT next week (again) to see whether or not his diagnosis gels with the pulmonologists. If so, we'll have them removed.

The root of the problem is the asthma/carbon dioxide levels. Both of these are being treated. Medically speaking he has made huge strides since our last visit a month ago, breathing tests indicate he is breathing much, much better now. This root, however, grew and sprouted something called "sleep-onset association disorder", which is a fancy way of saying that Sam does not think he can sleep without a parent nearby.

Now that we know what kind of root we are dealing with we can start the weeding process. Now that we know it will not be detrimental to Sam's health to enforce a strict bedtime procedure we can begin enforcing more boundaries. For example, no more cup of water in bed which leads to leaking through two overnight diapers a night. When apnea was a possibility there was a concern that he was extra thirsty (due to the kind of breathing apnea requires). No apnea, no cup.

We enforced a strict bedtime tonight. Not only did we enforce a strict bedtime we were able to do so with confidence that we were doing what was best for Sam without any fear that we were damaging the poor boy.

Our doctor sent us home with a very, very detailed plan of what to do, when to do it, and how to do it. I peppered her with questions for a good 20 minutes, "What if Sam gets a dirty diaper?" "What if he just screams for two hours straight?" She patiently answered my questions. When I asked her how long she thought it would take to get him sleeping "normally", she smiled and said, "The smarter the kid, the longer it takes. Sam is a very bright child." Gee, thanks.

Sam fell asleep within 20 minutes or so tonight. It was tough. He cried. His pathetic cries of, "I just want a hug," were a little rough to hear. But for the first time in months Sam fell asleep without a parent next to him. I should add it certainly didn't hurt that we gave him a small dose of a prescription sleep aid--this no doubt meant he fell asleep after 20 minutes of crying instead of 2 hours of crying. While it would obviously be better for him to fall asleep drug-free, nights like tonight will prove to Sam mentally that he can fall asleep without his daddy scratching his back or armpit (yes, this strange, strange child often asks for him to scratch his armpit. I will not do this once he hits puberty).

We have our plan puttied to the wall outside of his door along with Post-its of helpful reminders like, "This is good for Sam; this is good for us." I know it will get tougher as we move the bedtime earlier to a more "normal" time. I know we'll have some tough nights as we ween him off the medicine. And I've no doubts his middle of the night awakenings will feel torturous as he will have to go back to sleep without a parent or a sleep drug. But I am so, so relieved to finally have a plan. I'm feeling hopeful and empowered. And I know eventually Sam will, too.

As you think about it, we would appreciate your prayers:

1. I'm still fighting dread as I think about the middle of the night. I will be surprised if we don't have at least two hours of screaming sometime between midnight and 5 am.

2. For a consensus among the doctors concerning Sam's adenoids.

3. And then one more cherry-on-top request: IF Sam needs his adenoids out, there is a SLIGHT chance this could happen next Wednesday. This would be huge since I leave a week from today to speak in Iowa for two weeks. This surgery depends on 1) the ENT's diagnosis and 2) an open slot in the operating room on Wednesday which is when our doctor operates. I'd love to take an adenoid-free kid with me.

Thank you for your prayers and support. I know we still have a long ways to go, but at least we know which direction we're heading.


Jaena said...

So relieved for you to have a partial diagnosis and a plan. Praying for you all as you continue this journey. You are doing an amazing job and are the exact parents God knew Sam - your sweet, bright, funny boy - would need.

corrie said...

So glad to know the outcome! You guys have floated through my thoughts all day.... will be prayig for this chapter to come to a close for your family, but especially for sam!

Marc said...

Mandy - Glad to know there's an idea and a plan. I'm sure one of the toughest things was just the uncertainty. I hope that you do get good confirmation from all the doctors. We'll definitely be praying (and have been praying) for all of you.

Elizabeth Glass-Turner said...

so, so glad you've gotten to the bottom of it! praying for you all as things continue to unfold.

Judy said...

We'll continue to pray! I'm so gald that you got some answers AND a great plan from the doctor... We can do hard, when we know it is right...