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.

Sunday, January 31, 2010

Carma Chameleon Stages a Medical Protest

A note from mom: By late Thursday night, I knew we were in trouble. Sarah had spiked a fever, scratched her trach site raw, and was breathing with heavy, labored, noisy breaths. Not surprising as the temperature outside had plummeted into the teens with a brisk wind. I wrote awhile back how I feel I'm playing a game of roulette with Sarah's life when she gets like this.

This time I knew we were heading to an emergency room. So I started to prepare. Packed a small bag for me and one for Sarah. I took a fresh shower at 4:00 in the morning knowing it would be a few days before I had another. I even posted on Facebook that I was just debating which ER to head to. With our new insurance we can go to any of the three in the area. I decided I would stick with the Cleveland Clinic as I know the layout and the nurses on the peds floor are great. But the area late at night is not the greatest, so I decided to wait until daylight if we could.

When I went in to get Sarah prepared early Friday morning, something happened that has never happened before. She indignantly, flat out refused to go. I was taken a back. Now what do I do? She is twenty years old. I explained to her that she just needs some oxygen to help her breath. Her response in between labored gasping, "I do not need oxygen. I am not a baby." Now what? I tried reasoning with her, reminding her of past acute episodes and how much better she felt with the help of some IV steroids and oxygen. "NO," she screamed, "I am not going." So I left her bedroom. Maybe a few minutes to think about it will help.

About that time the doorbell rang. It was the UPS man with a delivery from our mail order pharmacy. Inside was a box of QVAR. For years Sarah used this inhaler, until it did not seem to be doing any good. When we saw Dr. Norr last week, he suggested that we try it again. Perfect timing. I went upstairs and Sarah willingly took two puffs. I decided to wait an hour or two to see what happened. No change. But then, QVAR is not an emergency asthma medication. I continued to give her Albuterol and tylenol suppositories to try to bring the fever down. Each time I was in her room, I tried to convince her to go to the hospital. And each time, she refused.

I decided my only course of action was going to be calling 911. I even got the camera in position to take a few snaps of the hunks in uniform scooping Sarah out of her bedroom, figuring it would make for a great blog post. Sick humor I know, but for those with medically fragile children, you understand. Then Sarah fell asleep. So I took a nap, something I learned long ago. I call it hospital survival 101.

Friday came and went. Saturday morning I got up really early to run to the office to distribute payroll then come home to head to the ER. While I was gone, John caught Sarah in the bathroom self medicating with the QVAR. We are not sure how many puffs she took. I went searching online to see if one could overdose on QVAR. Not likely. She was ghost white. Her eyeballs were gray. She was burning hot. Totally lethargic. But her breathing was more stable. She was still drinking little bits of apple juice but has not eaten since Thursday. Her lips are cracking. All cues we watch for, in determining if the big crash is imminent.

John and I sat down and discussed what to do. Should we force her into the car? Should we call 911? In the past, there was no question we would have been to the ER by Friday. But now, we felt we had to also listen to Sarah. But do we? I am her court appointed guardian for healthcare matters. That carries a responsibility. One that if not handled properly, can have legal consequences. We are stuck in the middle of a medical dilemma. We decide to wait a few hours, unless she seems worse. Then we will call 911.

I stayed up most of the night checking on her. She seemed no better, but no worse. Matt had a soccer game at 8:00 this morning several counties away. So John and he left around 6:30. I went to bed for awhile. Actually for several hours. I'm finding this fifty year old body can not pull the all nighters like it once did. When I awoke, I was a little panicked. The house was quiet. I lurched to Sarah's room. And this is what I found...

Ms. Carma Chameleon has done it again. She has pulled herself through. She was cool as a cucumber. Breathing is fine. Color back in her checks. Eyeballs are nice and white. And she is singing her song along with her iPod. The one she should have performed, on stage, at her music therapy share night on Thursday.

23 comments:

AZ Chapman said...

I am glad u made it sarah next time listen to your mom though,

Adelaide Dupont said...

Carma Chamelon!

What a great nickname!

Tsquared417 said...

Oh my...you scared me to death! I'm so glad she's ok.

The VW's said...

Glad you had such a great turn around Sarah! Usually I say "Mom's know best", but obviously you know yourself quite well too! Love and Hugs!!!

Rochelle said...

Scared me too...So thankful that Sarah pulled through on her own without any intervention.

Emily said...

This post had me so worried... but she made it through! Way to go Sarah!

Anonymous said...

You have more angels then ever. You are blessed. Love you!!!!!!!! a thousand times over. Catherine

Mary said...

Glad to hear you're feeling better without an ED visit!

stephanie said...

OMG! I was getting anxiety reading this. Sarah you're amazing. And Joyce you are too! You both a very cool under pressure.

Cindy said...

I'm so grateful Sarah is okay. I find that Beth usually makes better decisions than I give her credit for. There's more going on inside her brain that I realize. It is SO hard to trust them, especially in medical decisions! Scary, but you BOTH did great!!

To Love Endlessly said...

whew, that would be scary. Glad you pulled through tho, but I agree next time Sarah you should listen to your mom!

JRS said...

Wow. Just, wow. So glad she's better.
---Jen

FBF Rothkopf said...

I'll second that "Wow", but really, I think "OY!" But I'm so glad she's feeling better now!

Cammie Heflin said...

Praise you Jesus!!! I was so worried about her after I saw your FB post! SO thankful for all of you!

Kristin said...

Wow - glad you're feeling MUCH better!

Anonymous said...

"Wow! What an amazing story...leave it to Sarah to know she needed a little music therapy! ;-) We missed you Sarah, but SO glad you are feeling better." Bonnie

Leah said...

Oh man! This same type of situation is just over the horizon for us, I can feel it! Thanfully Angela LOVES the hospital and the attention it brings. But I just know she's going to pull something like this!

I'm glad to know Sarah is feeling better!

Karen said...

I'm glad things ended well, because you had us all worried.

Jessica said...

Very glad to hear you pulled through on your own Sarah - you really should stop scaring your mom like that :)

my family said...

what a scare! glad all is well now

starrlife said...

Late to the post but my that was frightening! Glad it all came out alright but what is the plan for the next refusal? That's a tough one.

ABandCsMom said...

Whew! Good for you Sarah. You're a trooper!

jjpsmommy07 said...

Wow Great job Sarah! Glad you are doing better