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.