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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

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Monday, December 25, 2006

Prayers for Nash's Tonsillectomy on Tuesday.....

Nash hasn't had strep issues with his tonsils, they are just huge, and he is always saying he is tired....recently getting up in the middle of the night.....along with the ongoing behavior stuff that you have no clue whether it is delayed development, sleep issues, or just being (insert age here).Nash has had two sleep studies to try and justify removal of his tonsils. His first found zero apenas, but found many hypopneas, but our ENT didn't explain those to us then and I didn't research it. It was "inconclusive" of obstructive sleep apnea.

Two years later, the second sleep study, which was totally due to our request, showed many "hypopneas" but no apneas. Also it showed ZERO REM sleep....as in NO deep sleep. I had no clue what a hypopnea was so I researched it then, and asked for tonsil removal. His chart has on it "removal requested by mom". Lovely. Here is what my research showed;A hypopnea is a decrease in breathing that is not as severe as an apnea. So, if normal breath airflow is 100% to 70%, a hypopnea is 69% to 26% of a normal breath. Like apneas, hypopneas are associated with a 4% or greater drop in the saturation of oxygen in the blood and usually occur during sleep. Also like apneas, hypopneas usually disrupt the level of sleep.

So my question is, why weren't the hypopneas taken into consideration with the first sleep study and we could have had the tonsils AND adenoids out together? We could have avoided two years of issues? I don't know and the ENT said she needs justification for insurance. I really am ready to make a ENT change after this. No Dr. should take insurance coverage justification over a child's health issue. Plus not tell the parent. So keep Nash in your prayers! Nash will be doing an overnight.

I can't emphasize enough how worried I am; Too many horrid hospital tales from children with Ds having tonsillectomies....and almost dying. I will be glad when this is way over.............

9 comments:

Rebecca said...

I can't imagine not getting to REM sleep. Elainah doesn't sleep well either. She didn't have the sleep study we scheduled because I had no one to watch the other children over night. Hopefully, we will have one next fall.

I am sorry they didn't do tonsils and adnoids at the same time. How frustrating.

My what a difficult night's sleep after such a remarkable day. Please try to get some rest.

Update here or on T21 if you can, and he is in recovery and doing well.

I will keep your family in my thoughts tomorrow. Many hugs.

Annette said...

oh Jan... I didn't know and am just reading this now (9 pm on Tuesday night). Please let us know how things went with Nash! I'll say a prayer for him tonight.
((HUGS)) to my little man!
- Annette

Jen said...

Definitely sounds like it's time for a new ENT. Insurance, and the need for it, just makes me cranky.

I hope Nash is doing well and has a quick and speedy recovery. I'm thinking about you all.

By the way, Seger is the cutest dog I've ever seen!

Mauzy said...

They are holding him today (Wednesday) as he isn't drinking and has pain. Hopefully we will be able to leave soon!

Tara Marie said...

Thinking of Nash and his family. Emma Sage asked me today "So how is my boyfriend doing?".....as I told her Nash was in the hospital!

Sending Nash all of our love and support for a peaceful and quick healing time.

Mauzy said...

We're home! after changing meds, this allowed him to drink more, and we went home early afternoon. Thanks for your prayers! Now let the healing begin, and lets hope it goes well!

Tricia said...

I just brought my baby home from the NICU with heart issues (she's doing much better) and I am discovering this may be just the beginning of the health issues related to Ds. I've enjoyed reading your blog, it's been helping me with the our daughter's diagnosis of Ds...shows me there are all sorts of resources out there. Thank you! Best of luck to Nash. I'll be thinking of you all...

Tricia said...

Oops! Just read your last comment. Glad all is going well and you are home!

Tammy and Parker said...

Just checking in hoping to find a pic or two of Nash. Hope he is feeling better and his mood is a little less cranky.

Let him know his pal Parker is thinking of him!