My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Friday, February 24, 2012

Same Month, Different Year

by Joyce... Every February. Seems like deja vu. Yet every single year, I still get knots in my stomach as we play the game of roulet...to head to the emergency room. Or not.  Tonight, my husband called and told me it was a 50/50.  So he gave her a shower while I was still working at the store.  It is a routine we have down by now.  If we do go the ER route, we know there will be no shower for a few days minimum, could be a week or more until that pulse ox gets up high enough for release. 


When I arrived home I found a patient not so willing to comply with our desire to head to the hospital.  We know she is having trouble breathing by all the scratch marks at her trach site.


She insisted she was not leaving her bed and instead tried to change the focus by asking me to take a picture of the Gilmore Girls.  So this picture is for you Sarah... 


Note all those Beanie Babies on either side of the television.  Many were collected during the hundreds of hospital visits over the years. It makes for a nice menagerie and a visual reminder that we are dealing with one tough cookie.  Oh speaking of cookies...I bribed her.  I told her if she would keep coughing and helping to bring up that asthma mucus she could have some...
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this next pic might not be for the faint of heart.  To us asthma moms, it is like a nugget of gold... 
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and with that treasure, I produced a brand new package of Chewy Chips Ahoy.  And that made for a very happy girl...


Darn. Just as this post is about to go to print, the nebulizer mask is not functioning.  Our last one.  I have absolutely no idea who to call to get a new one.  This will be our first request for durable medical equipment now that Sarah is a member of Care Source.  That should be a fun call come morning. Any Ohio readers have knowledge or suggestions?

I hate to think we will have to head to an ER just to get a new mask, but then Medicaid policy and procedures are not always defined by the brightest. Politicians like to get involved...OK I admit I need sleep.  Stay tuned for an update...hopefully by Ms. Sarah herself in the morning:)

13 comments:

RK said...

Praying all is looking better this morning and no ER was necessary. The battle with politics and medicine, I don't envy your journey for the new mask... Feel better soon please, Sarah!

Deb said...

Praying all is well! Feel better Sarah!

Becca said...

I hope you get to give the ER a miss!! Feel better, Sarah! ((hugs))

Rochelle said...

Oh Sarah praying you are breathing much easier and coughing up all that nasty stuff without an ER visit. Good luck with getting the mask easily.

Kim said...

I hope she's better this morning. Thinking of you and sending well wishes!

Kim
TheSimpsonSix.blogspot.com

CJ said...

I hope she's feeling better now!! Did you get the mask thing figured out??

I nominated you guys on my blog!
http://www.dontlicktheferrets.com/2012/02/the-versatile-blogger/

Lacey said...

Oh man, darn mask!! Lets not even get started on the bright people in the world of medical for our children. I snapped at 4 people yesterday alone, more people than in my whole life before Jax! Sad really.
Her and Jax really need to be good!

Shipley Family said...

You can get a mask at any drug store. We like to use and abuse our masks. ;)

Pam said...

Hope you will be feeling better soon Sarah!

Cindy said...

Oh no! Sorry this is happening again. Hope she's doing much better today.

Amy said...

Hope Sarah is feeling better! Praying for all of you!

Alex's Mom said...

We are all praying for Sarah to get better soon, and for you as you worry!

Anonymous said...

I just bought a new mask yesterday at CVS but I imagine any drugstore would have them. Ours was less than $10. I hope Sarah feels better soon. All oue asthma kids are sick, something's going around for sure!