I can’t tell you how it happened, but I saw it all take place right before my eyes. Scout’s chair tipped back and the back of her head hit the corner of bricks on the hearth of the fireplace. She’s such a careful kid. She wasn’t doing anything I saw to warrant such a reaction out of that chair. But it happened. In slow motion. Her body going back with the chair tipping, her head hitting the brick, her neck being forced forward because of the blow. I was sitting right there. I saw it all. I went to grab her, but she rolled over and put her body in a curled up sitting position before I reached her, when I saw the blood. In those split seconds, your instincts kick in. And as a mom with a kid with LDS you rehearse these situations in your head thousands of times, not for fun, but because they are a very real threat. Because just about everything that may be just kid stuff for just kids is on a whole other level of emergent for a kid like Scout.
I knew this was an ambulance worthy ride when I saw the blood. There was a lot of it and it was coming quick. within seconds, I called 911, and held Scout.
“911 what’s your emergency?”
“My daughter fell and is bleeding a lot. Send an ambulance now. She probably needs stitches. She has an aneurism disease, is a heart patient, and has C1/C2 instability.”
(Dispatch got our address and told me the ambulance was on it’s way)
“Put pressure on her head and don’t let go. If it bleeds through, keep it on. Keep pressure on it. Don’t let her go to sleep.”
“Is it really on the way? Where is it? Do you need to send a medi-vac?”
“Why would I need to send medi-vac?”
“Because we live far out here. And an ambulance takes a while sometimes”.
“It’s on it’s way.”
(In a sing songy kind of, I don’t really believe you voice)
I look at the clock 3:07pm
“What is her disease?”
“Loeys-Dietz Syndrome. It’s a connective tissue disorder”
“Can you tell me more plainly what that means?”
“She’s 5 years old, is at risk for aneurisms, has heart issues, and has neck issues”.
(I can hear in her voice that she knows that I mean business)
“I need to call my husband”
“We can call for you”
(I can hear her getting another dispatcher to do that while she stays on the phone with me)
Meanwhile the tea kettle starts screaming on the stove because I had started to make a pot right before all of this happened. I decide to leave Scout for a brief second to turn that off because that is not a calming noise to add to the stress of the situation and a little girl that is obviously scared. I go back to holding a wash cloth on the back of her head while holding her in my arms. She just keeps looking at me and telling me over and over that she wants to go to sleep and that she loves me. I tell her I love her too, and to not go to sleep. At this point we had shifted into the bathroom. I grab the ipad that appeared out of nowhere and turn on a movie to keep her distracted.
“What is she saying?”
“She’s telling me she’s tired and she loves me”
At that point I wonder if it’s because she either knows she’s about to die, thinks she’s about to die, or she’s just tired and loves me.
“Honey, you are going to be fine. You just hit your head hard and it’s bleeding”
Scout, crying with the thought that she will need a band-aid:
“I don’t want a band-aid”
“Oh well, that’s the cool thing about it, you probably won’t get a band-aid. They’ll have something cooler to put the boo-boo back together.”
(I always feel guilty when I try to make all of these medical scary things sound totally rad).
“We couldn’t get your husband”
“Where is the ambulance? Do you know where it is?”
“No, I don’t but it’s on it’s way”
Meanwhile, my 2 year old knows there is a serious situation amidst this chaos. He kisses Scout on the head, sits down next to us in the bathroom floor and watches whatever movie I put on the ipad. I start thinking of all of the things that are going to need to happen before we leave in the ambulance. I’m dressed. Good. Scout’s dressed, but bloody. Ash is in a diaper and only a diaper. What am I going to do with Ash? I know they won’t let him ride in the ambulance.
“I need to call my husband”
“OK, you can call me back if you need to. The ambulance is on it’s way”
Call Gabe. No answer.
Call friend that lives kind of close by, No answer.
Call Gabe. No answer.
text Gabe: “911. Call Me!!!”
Call friend that lives kind of close by, No answer.
I have no idea what I’m going to do about my 2 year old.
“Scout fell and an ambulance is on it’s way. She’s probably going to need stitches, I think the bleeding has slowed down. I need you to come home and get Ash. I can’t get a hold of anyone”.
The neighbors we did know all were either out of town or at work. There’s Edna, but I don’t want to scare her.
3 Paramedics arrive. I forgot to look at my phone to see how long it took. This has been a very real concern for me , but I still don’t know the response time. I’ll just say it was quick enough. Rght behind the paramedics, Edna, our 70 something neighbor runs, RUNS in right behind them. She’s out of breath and looks terrified. Sits down in the chair next to the offending one to catch her breath. I have no idea how she got here so fast. We live on a farm and our houses are farther away than suburb houses. I don’t even know how she saw the ambulance, or how she knew. I will speak to her in a minute. She will wait with Ash until relief arrives.
I ask all of the Paramedics their names so I can introduce them to Scout. One’s name is Alex (She loves Alex the lion from Madagascar). Everything is coming to a calm now. I repeat everything I told the 911 operator. They take a look at her head. At this point, I hadn’t even been able to see the wound because of her blood and hair in the way.
“She’s going to need stitches.”
My phone rings, it’s the one person I thought could possibly come get Ash.
I look at Edna,
“Will you watch Ash until Jen gets here?”
Edna nods. I hadn’t even asked Jen yet. I pick up the phone.
“Jen, what are you doing?”
“I’m scraping paint, why, what’s up?”
“We have a little emergency, Scout fell and I need to take her to the hospital. Can you come get Ash until Gabe gets here? Edna will be here with him until then”
“I’m on my way”
My phone dies. The paramedics are patiently watching all of this unfold. I look back at them and say,
“Are we ready?”
“Yes. Maury Regional”?
Given everything I had told them, they knew they needed to take more precautions than usual. One of the paramedics took her in their arms and secured her in the ambulance, while I got her milk, my water, the ipad, chargers, my shoes, and her backpack that I take everywhere for those just in case occasions. I leave the lunch on the table we were just finishing up when the fall happened. I Look at Edna and say “Thank You” and walk out to the ambulance.
They told me they were going to have to give her some braces, so when I walked in the ambulance, she was laying on the stretcher, she had on a neck brace and some kind of head bracing as well.
Scout’s bracing in the ambulance
Here’s the thing. This is her third ambulance ride. This year. I am not proud to tell you that she’s getting to be a pro at this. She was calm and didn’t talk. I always have to answer questions that I don’t really want to to whatever paramedic rides in the back with us (i.e. Now what’s Loeys-Dietz, again?, What’s the life expectancy?, Are there mental issues?…) but I always answer the questions, because who else can?
I wondered why they didn’t turn the lights on so we could get through traffic. It’s a 45 minute ride now that we moved to the country. I tell Scout that they have TV so maybe we can find ‘My Little Pony’ or something and they have internet so she can watch PBS kids. We don’t have TV or internet at home so I say this to now hopefully soften the blow of her hospital visit.
We finally arrive. They take us to a room. When you first arrive in an ambulance at an ER, the whole team comes in to meet the new patient. I go through the script again.
Starting with the most important at hand before they touch her.
“She has C1/C2 instability, has had an aortic root replacement, She has Loeys-Dietz syndrome” I look for understanding eyes. None. “Which is similar to Marfan, her cardiologist is Markham, her Ortho is Mencio”
The only thing I heard the paramedics say was that she fell from a chair onto a hearth and that the mother denied her ever loosing consciousness.
Here’s where something occurs to me. I am not the same person I was 5 years ago. I wouldn’t understand a word I just said. I would look at this future me and think, “Wow, she sure does think she’s like some kind of doctor or something and being all assertive with these medical peoples. And why isn’t she wearing socks?
They took a look at the wound, took her temp, BP, and sats, ask me more questions about her and not much about the actual incident. They decide to do a CT scan, just in case. I told them she had been limping for over two weeks from a fall just in case they wanted to do an xray of that. They didn’t. I wondered how long it would take and if they would have to put her under for the scan. They didn’t think they would have to.
Gabe arrives at the hospital. He worked out to have Ash stay with our friends so he could be at the hospital as long as it took. God Bless them. They are good ones.
Scout was happy to see her Daddy. At this point we were in the 5:00pm hour.
When she went to get the CT scan, they told her they were going to take some pictures. She said she would smile for the camera. We told her to stay really still. She did. I found a ‘Fluttershy’ sticker for her in the scan room, and the radiologist gave her some kind of miniature stuffed leopard backpacky concoction. They said it would take 20 minutes for the results.
Scout smiling for the CT scan picture
We went back to the room to wait for results, play a free ‘Strawberry Shortcake’ smoothie game I downloaded on the ipad (because we had internet at the hospital), and went to the movie cabinet to find something Scout would like. Two movies with lion characters, and ‘Horton Hears a Who’ which she recently just saw for the first time at the LDSF conference movie night and loved. She picked ‘Horton’.
The annoying, yet precautionary neck brace
In the 7:00pm hour the resident doctor came to ask me if anyone had come back to tell me the results of the CT scan. I said softly “Really”? because I really actually thought he was kidding. He saw I was weary and Scout was too. All of the sudden, very quickly, after waiting a very long time, he came in with the doctor in charge with the results. The CT scan looked fine. Scout was finally relieved of her neck brace. The doctors would be back to numb the head wound.
The head doctor explained to Scout about the magic gel that he would apply. It would help her not feel much when he put the magic thread in, it would just feel like a little tug like when someone tugs on your hair. He told her that if anything hurts that she could punch him in the stomach as many times as it hurt. They applied the magic gel. It would take 45 minutes for it to take effect.
After the neck brace was removed and the magic gel took effect (sparing you the blood from the back view)
I asked Gabe to go get some dinner and bring something back that Scout will like. None of the hospital food is good or good for you, so he walks to Hillsboro Village on such occasions. He got Sushi for us and Chicken Skewers for Scout. She ate one bite.
The doctors came back to stitch her up and cleaned the wound. Gabe took pictures, of course. I won’t show you, but it was a pretty big gash. I called our friends to tell them we would hopefully be home by 10:00. They had taken Ash to all of their kid’s baseball games. It had never occurred to me that they had plans for the night.
Scout gave the doctor 6 punches to the gut. The resident told Scout he deserved some of those. I think he wanted to get punched too. She didn’t do it.
We carried her to the car. Gabe had a booster seat in his car, which he never usually has in there. I sat in the back with her. She said she was just really tired. She wouldn’t lean back because she was afraid to hurt her stitches. I Moved over so she could lean on me. As we were approaching our exit home, Scout had that all too familiar feeling of nausea. She threw up. I caught the second round of vomit in my water cup. But her stuffed lion, Alex and her Nala and Simba shirt caught the first round. I immediately blamed the neck brace for this one in my mind, but told Scout that it was ok and we were almost home. Gabe asked what he should do, I told him to keep driving, take her home, and go back out and pick up Ash.
Gabe left to get Ash at the meeting point of the McDonald’s off of the exit, I got Scout in the tub to wash her off, and tried peroxide on Scout’s shirt to wash out all of the blood. I had already sent a text to my sister to start looking for a new one. Gabe had asked me in the hospital why I was so worried about that shirt. I told him because it was the only one that had Nala on it (I’m sure he has no idea how hard it is to find a shirt with Nala on it. It’s not the ’90’s anymore).
When I got her out of the tub, she said “I just want to lay in bed with you and watch a little movie”. I put her in bed with me and she immediately fell asleep. Ash and Gabe soon arrived home where Gabe moved Scout to her room. We agreed that he should sleep with Scout all night just to keep an eye on her. He did, but let’s be honest, I woke up every hour or so to check her temp and if she was breathing too. She was. Ash slept well from his big day too.
I know This isn’t a post for everyone. Maybe it’s just for me. Maybe I’m putting it out here for those one or two parents that can relate and to let them know they’re not alone. Maybe, I just needed to get it out of my brain and put it down. But then there’s that side of me that wants everybody to know what Scout goes through. The further we go on this journey as parents, the more we know how people very close to us still don’t get it even though we want them too. But how can they? Old me would totally not get it. I guess until you have a child like Scout, you may never fully grasp how consuming this syndrome is. A fall that requires stitches is a bigger deal than it should be. There are plenty of medical professionals that we’ve dealt with that don’t get it…yet. But we have hope in the future. We have hope in the doctors that are working daily to bring a better quality of life for our kids.
I’d like to close with a quote from my friend, Kate who wrote about her experiences with her daughter, Mo and her first 17 years of life. There’s a lot more hope than there was in 2005 when LDS was first described. This is from a chapter in the book where they meet Dr. Dietz for the first time and he is explaining some things to Mo and Kate. This is before Loeys-Dietz even had a name.
“Mo, when we first started studying this disease process, the story didn’t have a very happy ending most of the time. But now we’re finding so many people with so many different degrees of this syndrome that with early and vigilant care people are living long and fulfilling lives. I want you to go home to Wisconsin thinking about going to high school and college and walking down the aisle when you get married some day.”
Mo is about to start her second year of college in nursing school.
Please keep praying for Scout, Mo, and all of her fellow LDS warriors. Please keep praying for complete healing. Please pray for a cure that my human mind seems to think is impossible, but my faith tells me it’s not. Thank you for your love. We love you.