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 20, 2009

The Calm before the Storm

I should have known that near perfect ER visit was going to be followed up by something. Sarah had a pretty rough night. The high fever returned which it usually doesn't after two doses of Rocephin. I'm not sure what's going on there. And she really had a very hard time breathing again. By 3:00 a.m. (why does this always happen in the middle of the night?) she was coughing, coughing, and coughing.


Sarah wanted to be sure I posted this picture. She is so proud that she always uses her bucket now.
The good part about coughing is the mucus that follows. During these episodes, Sarah has so much mucus. We refer to it as asthma crude, although a few times doctors have tested for Cystic Fibrosis because the mucus buildup is so similar. The test always comes back negative, but I wish we could figure this out. For years, we have thought we were alone on this path. Since joining the blogging world, we realize we are definitely not alone. There are so many other families whose children with Down syndrome experience the same episodes. We also thought it was because of the Ohio weather, but we now know this is happening in all geographic locations. Another common factor seems to be that the doctors are frequently baffled with the cause and how to treat it. Is it asthma? Copd? Pulmonary hypertension? or is it something unique to children with Down syndrome that has yet to be identified due to lack of research dollars?
Nothing like Daddy to make you feel better. It is 5:30 a.m. and John is heading to the office. A quick detour first. Sarah is demanding apple juice and we are all out. Thank goodness for the 24/7 CVS down the street. Thanks dad.

The supplies for home IV therapy just arrived. They are always packed so neatly. And of course with every box comes the special red, bio hazard container. For a while we had several of these in our garage, full. What do you do with them? You can't put them out on the tree lawn on garbage day. I know you're suppose to take them to a medical facility, like I ever remember to grab them when we are running out in time of crisis.

Home IV supplies have come a long way since we first started doing this. No need for poles and floppy bags anymore. All the medicine is preloaded in this cute little container. I'm sure there is a medical term for them, but we call them "baby bottle pops." You know, that candy the kids like that looks like a little baby bottle, only it's full of colored sugar. Stay tuned, the home health nurse should be here this afternoon. There could be fireworks if she insists on changing the IV lead line. Sarah does hate that. But being in your own bed sure beats the hospital.

16 comments:

Junior said...

Sarah so sorry you are still not feeling well. We will keep you in our prayers.

Kristen said...

It's rough being that sick.

What sweet parents you have to take care of her every need and desire.

I'm wishing and praying you get well thoughts Sarah. I hope you feel better soon.

Ruby's Mom said...

Sarah, sorry your feeling so awful.
I'm praying for you to get better.
We have colds at my house too and I'm worried Ruby will get it.

The VW's said...

Hope you feel better soon Sarah!!! Glad to hear that you are able to heal up at home!

Lacey said...

Wow thats fancy, I've never seen those. These stinker downs kids, babies, teens, and adults. If only we could figure them out and how their little bodies work.

Melissa said...

SARAH! MY goodness, you poor thing!! Hope you get to feeling better soon:) Sending you & your poor Mommy some BIG hugs!


HAA..LOL THE WORD VERIFICATION SAYS...FUNSARRA!!!!

Debbie Yost said...

I'm sorry it's not going well? I was hoping she'd be doing much better after her little trip to the ER. I've not heard of the mucus thing, but Peanut is only 4 and we are just starting this journey. That's great that you have found support through blogging though.

I hope Sarah is feeling better real soon and you all get some much needed rest!

Stephanie said...

Will the home health nurse take the bio-hazard containers? Ours does.

Aiden has the mucus thing also.

Beverly said...

Hope your feeling better soon Sarah! I love the color of your room!

Lianna said...

Oh my heart. I feel so badly for all of you. Sweet Sarah please get well!♥

Cammie Heflin said...

Oh bless your heart! I hope Sarah feels better soon!

Jeanette said...

Sorry to hear that you are feeling so bad. In one of those pictures you just looked so miserable! I hope that you are feeling better soon!!

Heather said...

Feel better sweet Sarah.And Joyce ... can you believe it.We STILL have numerous bio hazard containers FULL from last March and April when I was injecting Zoey twice a day with ACTH for her seizure disorder.What the heck should I do with them?

sheree said...

bummer she is still not feeling well. Gabby landed in the E.R. tonight and she is also suffering from vomitting as a result of nasty mucous. No fun. Feel better soon, Sarah!

Monica said...

Sarah, hope you are feeling better!!! We will put you in our prayers!! ~hugs~

Ellen said...

Oh, Sarah, I am sorry and I hope you are feeling SO much better as you read this. I gave you and your wonderful mom an award over at my blog, come get it when you are up to it.

Ellen and Max