Tuesday, July 19, 2011

Road Trip pt 4–Test Results

I realized I hadn’t posted an update or the results of Madalyn’s sleep study. After her awful experience at the study, things got back to “normal” pretty quickly once we got back home. (Insert “crazy busy life” in place of normal). Ha!

After we left the hospital, we went and picked up Samuel from Jordan’s place, took a couple pics and headed home.

Madalyn and Jordan are almost exactly 19 years apart. It always amazes me that I was giving birth to my daughter almost 19 years to the day after I gave birth to Jordan. Not exciting to all of you I'm sure, but I think its cool.

Poor Madalyn was so tired after her sleepless night in Denver and driving 7 hours back home that morning, that she slept in til nearly 10 AM the next day. And this is the girl who wakes up religiously at 6:30 every morning. Poor little ladybug.
There have been some slight changes around here because of the results of the swallow and sleep studies.

Because Madalyn is aspirating, all of her liquids have to be thickened now. It is a bit inconvenient and I’ll admit sometimes she has her milk without anything to thicken it, but for the most part we are getting used to doing it. Hopefully she will outgrow this soon.

During the sleep study, apparently Madalyn’s O2 sats were going pretty low and they had to give her oxygen. She had several episodes of apnea. She wasn’t breathing out the way they wanted and there was some concern about her exchange of oxygen and carbon dioxide.

Her total sleep time recorded was 117 minutes!! (See I told you it was an awful night!!)

From that short amount of time, they decided she needs to be back on oxygen at night (which we are doing), needs her tonsils and adenoids out, and even recommended that she see a pulmonologist (I refuse to freak out about this one). I believe her lungs are working fine.

If anyone has been through this (and/or the swallow issues), I would love to hear your thoughts!

I think that Madalyn’s night was so NOT typical of her normal sleeping, and that she was seriously stressed just from the environment and having all those wires attached to her body. (It made me claustrophobic just looking at her!)

I am not saying that their results are wrong. We are following through with their recommendations. Like I said, she is back on O2 at night. And we will call to schedule the tonsil surgery even though I do not want to see her have to go through another surgery... But does the stress of the whole experience play a part in the results of a study like this? I would love to hear opinions and experiences of you who have been there done that!

1 comment:

Anonymous said...

My child does not have Down syndrome but she does have other issues that required her to have a sleep study. I agree it was a horrible sleepless night. They spent half the night trying to get her to sleep in a crib before giving in and setting up a bed for the two of us. She slept a total of around four hours. I thought she slept fine so I was shocked when the results showed that she stopped breathing over 30 times. And each time she woke up and fell back to sleep and I never knew it even though we slept together. I know the tests were skewed because of the unfamiliar surroundings but they were still helpful just because of what they showed while she was sleeping. My daughter ended up having a jaw distraction which created more room in her mouth and allowed her tongue to lay flat instead of blocking her airway. It was almost an instant fix, I never knew that all of her snoring and snorting was her struggling to breathe until she stopped doing it. I wish your sweet girls's problem was easily solved. Good luck to you all.

And your ears will hear a word behind you, "This is the way, walk in it", whenever you turn to the right or to the left. Isaiah 30:21

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Psalm 139:13-16

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.