Abby · Down syndrome

Fifteen minutes of fear.

Minute one.

Sleeping, her coughing subsided as her body began to tremble. Small shakes turned quickly to an uneven but terrifying shiver. Her breath caught as her eyes blinked open. I could see the shock in her eyes. Her body was betraying her.  Her body was cool. No fever. Lance scooped her up and stripped off her clothes as I ran into the bathroom to run a bath.

Two.

Her breathing was labored and erratic. Her body shivered in kind. Seeing that she was having trouble sitting on her own, I pulled off my clothes and got in the tub with her. I held her against me and breathed with her. The water was hot, but her shivering wouldn’t quit.

Three.

The water covered her now as I rocked her in my arms. Her skin was mottled, her hands a patchy purple. Breathe…slow…breathe….slow….shhhhh….slow, I willed her to calm. I willed myself to calm. Lance ran in with more albuterol and ibuprofen to add to her tylenol and steroids.

Breathe. Slow. Shhhhhhhh.

Four.

Fever. Fever. She’s hot. Too fast. This was happening too fast. Breathe. Her coloring worsened, the lines of the mottling of her skin grew purple. I moved her from my chest and laid her against the back of the tub, hoping that stretching her out a little would help her breathing to slow. It didn’t work. “Something is wrong.”  Lance came in with a towel, swaddled her gently and then held her tight as she continued to shiver.

Five.

Soaking wet, I ran without a towel into my closet to find clothes. We had to get her to a hospital.  Do we call rescue? Would they be fast enough? Breathe. Calm down. Breathe.  Her shivering subsided but her breathing had yet to respond to the medication. Clothes. Where the hell were my t-shirts? Why do I have ONLY pajama pants but no t-shirts? Focus. FOCUS. Think.

Six.

I grabbed my hospital bag that I had emptied just last week in a fit of arrogance. Things had been going so well. Six months since our last ambulance ride! Focus. Focus. Why won’t my ADHD quiet just for a minute? Focus. Clothes. Socks. Hospitals are cold. Clothes for Abby. I’m sunburned.  Stop. Focus. What do I need? Where are my t-shirts?

Seven.

“Get Heidi!” I yelled to my boys downstairs.  “I need a diaper bag. I need…shit…” I notice my hands trembling. Pull it together. Breathe. Lance is sitting on the bed with Abby who has fallen back asleep. Her breathing is too labored, but the shivering has almost stopped. Her fingers were still purple.

Eight.

We need to go. We need to go. Where’s my phone? Breathe. Breathe. Shhhh. Lance carried Abby who was at this point not waking up to the car. Heidi handed me my keys and a soda as I ran out to the car.  Too fast. This is going too fast. The last time her body reacted like this she was carried away by a helicopter.

Nine.

I gun it out of the neighborhood, careful of the kids playing as the sun shined too brightly in my window. I glance back at Lance. His face grave as he held Abby in his arms. He was too afraid to put her in her seat where her head would slump against her body, further obstructing her already labored breathing. The car was hot, but Abby was still shaking so we didn’t turn on the air conditioner.

Ten.

Grateful for a car with some horsepower, I screech the tires as I head out onto the main road to the hospital. I’ve done this drive too many times in the amount of time we’ve lived here. I clench my fists and release them again in an effort to make the shaking in my hands subside.

Eleven.

Cars are too slow. I pound my hands on the steering will in an unseen effort to get them to just move.

Twelve.

Breathe, Abby. Breathe. Slow it down. Please, God. Slow it down.  Her eyes were still closed, her head still slack against Lance’s chest. Her body seemed to calm a little. She was no longer shivering.

Thirteen

I notice little things outside. Cars parked on the side of the road, people in the strawberry patches at Shartner Farms. I glance back at Abby. Her color was returning to her fingers, the mottling on her skin had almost disappeared.

Fourteen.

“She’s okay. She’s okay. Her breathing has slowed down. I think she’s responding to the medicine,” Lance says. I pull over and open the back door. Her breathing had slowed. Her chest had stopped pulling into itself. She was okay. She had responded. She was sick, but not hospital sick.

Fifteen.

I shut the door to the car and place my hand against it, feeling the heat under my palm. I steady myself for a minute, convinced I’m about to cry. I don’t usually have time to break down fifteen minutes into trauma. It’s usually days before I realize how scary things got. She was okay in almost the same time it took her to scare us in the first place. She’s okay. The fear that had been directing my movements now had little place within my body. I felt it wash through my veins.

I hate being afraid. I hate it. I hate not knowing if she’ll respond to the medicines we give her at home or if we’re on our way to our next trip to intensive care. I hate the worry that accompanies the knowledge that without intervention, we could have just lost our daughter. In fifteen minutes.

I’m exhausted. The fear that pushes me to act also seems to drain me of any energy when it leaves my system. My bones hurt. I know I won’t sleep much tonight. I will sit by her bed and listen to her breathe. With any of my other kids, we would have still gone to the hospital to make sure everything was okay. But for Abby, we only go to the hospital when we have no other choice. Exposing her crappy immune system to new strains of her next emergency doesn’t make a lot of sense when we can care for her at home. Still though, I think about what a relief it would be to have her hooked up to machines that would watch her sleep so I didn’t  have to. So I could sleep.

I laugh. I wouldn’t be able to sleep in the hospital, either.

30 thoughts on “Fifteen minutes of fear.

  1. Watch her closely. This sounds like Sepsis. The severe shaking, nothing can warm you and then the fever shoots up. Even the mottled skin. Saying a prayer for your sweet girl. But, get her blood checked, blood cultures if she has this happen again. It’s happened to me, way too many times. It’s scary. Hugs ~ Jo

    1. That’s so scary. I’m glad you mentioned it because I had no idea sepsis caused that reaction. Fortunately, I guess, it seems as though it was heat exhaustion. We will definitely get blood drawn if it happens again not related to being outside in the heat. Thank you for commenting.

  2. Oh god. Tears and absolute fear just from reading this. Love you all and sending all the strength and love I’ve got.

    1. I’m with Kristin. I was trembling while reading every word. I don’t know how you make it through things like this!

  3. When we have a child living with a chronic illness or condition:

    Living near a hospital is MAJOR.

    Having the right medications on hand is IMPERATIVE.

    Thinking about a struggling economy that could take those two things away from us all is my BIGGEST fear of all.

    Let us pray.

    1. You’re totally right. We live about forty minutes from the Children’s hospital, and for Abby, regular hospitals just don’t cut it. We need to think about that in our move to Washington in a few months. UGH!

  4. Oh my god. I’m so sorry that you all had such a terrifying experience and that you’ve been through this before and may go through it again. Wishing you sleep – sleep filled with mermaid dreams where you don a killer turquoise shimmering, scaly mermaid tail. Xoxo – Akamm

  5. So terrifying. I’m so glad she was ok but so sorry for all of you having to go through it. You are able to put us all right there with you through your brilliant writing. I think I can finally exhale now that I’m at the end of your blog post – I can’t imagine being a mom going through that. What strength. Phew….god bless.

  6. So glad you are near the hospital. We are 15 minutes from ours and with my son’s condition I don’t want to go any further away. So scary. I think I held my breathe from your first sentence to your last. Thankful she’s alright.

  7. Sending you all some warm aloha and hoping everything will be ok. I know how terrifying it can be but i am sure you are greatful to have found her and taken action when you did. …xoxo

  8. Just like Mary, I think I held my breath through that entire blog. My head hurts and my body is tense. I can only imagine how you feel having lived it firsthand. I am so, so sorry for what you all went through. How terrifying. I am so thankful to God that the medicine kicked in and worked. Trust me, I will be bending His ear for the next little while, praying for your sweet, precious girl. I know it’s easier said than done, but I hope you can get some restful sleep. Love, prayers, hugs, comfort and peace are being sent your way.

  9. I had the read the end first. I’m sorry you had to go through that. I can’t even imagine. Love you. So glad she’s okay.

  10. Have you considered a SNUZA? This is what I use so I can sleep while my son, who had infantile seizures, sleeps.
    It is a small clip that alarms after 15 seconds of irratic or no breathing.
    Sorry you went throug hthat.

    1. I have never even heard of such a thing! I’m going to have to look into it. We begged the doctors when she was in intensive care the second time to order a pulse oximeter with an alarm, but they won’t do it. They have all said that if her breathing is bad enough that we think she needs to be on one of those things, she needs to be in the hospital. I get that, but at the same time, taking her to ANY hospital is dangerous because of the crap that lurks there. If we could care for her at home, we’re going to. Did you get yours through your doctor?

      1. I don’t mean to answer for Alice but I was curious about them so I googled them. There are some on Amazon, ranging from $60-$100 each. They’re rated 4.5 stars of out 5 stars, meaning a whole lot of people are pleased with them. Definitely something worth looking into! Good luck!

  11. I’m so glad she’s doing ok now. Scary as shit. Even reading along, my blood pressure was rising. Can’t even imagine how you and lance felt.

    Hugs.

  12. Oh baby. I’m so so sorry. We were in that same exact spot so many times with James. I felt like they should have room reserved at for us as we were frequent fliers. That and our own personal helicopter on stand by for Cleveland Clinic. Our insurance and medicaid approved a in home nurse due to his fragile immune system. Is it possible you could make a case to your insurance company for this?

    1. She was DENIED for medicaid here. DENIED! This after spending time in the ICU in December, having to see seven different doctors several times a year, and not being able to hear very well. It blows my mind.

      We’re moving back to Washington, but prospects aren’t great there, either as far as the waiver goes. Virginia was the best. That’s how we had Heidi living with us last year.

      But I haven’t thought about our insurance offering something like this. If we’re going to have to pay up to our catastrophic out of pocket limit every year anyways, I should see if I could get them to help. They’ve been pretty good to us so far…

  13. Oh hun, your sweet girl! How terrifying for everyone. Sending you mucho love and prayers and lit candles and all sorts of woo-woo energy for strength and faith.

  14. You have all of our love and support. I know our babies are different in their differences, but we fight everyday and will always be there if you need someone to stand by you.
    These days are terrifying and remind us to embrace and love each healthy day we have. Sending you the biggest hug ❤

  15. They are pricey, but my in-laws looked into getting a pulse ox alarm when Kaitlyn was being discharged from the NICU as a preemie. She had lots of apnea spells añd I was in
    .We ended up with a basic breathing motion monitor that alarms if they stop breathing. I will look around and send you any links I find.

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