Clouds, May 2010

Clouds, May 2010

Sunday, July 17, 2011


Dan said something which is encouraging me to post this. 

I have no desire to re-live the last couple days, and I have no desire to force anyone else to experience it. However, last night around H's bedtime when we were merging onto the highway on our way home from hospital #2, Dan said, "You know, people don't really get it. They say oh yeah I know Fragile X...yeah, anxiety... but until they've treated someone with it, they have no idea."

So as per my intention, I will remain dedicated to making this blog all about awarenexs. The good, the bad, the ugly, and the beautiful. 

The last couple days were a mix of all four (almost in that order).  

I can not recall whether I first realized Hayden's limp on Thursday evening, but I do know that it was evident Friday morning. Subtle, but evident.

Friday morning when I dropped H off at summer school program, I mentioned to his Aide that it seemed he was favoring his right foot. I said, "While I was at work yesterday, and Dan was working from home, I know Kayla did water play with him outside. Perhaps he just slipped on the grass."

Kayla is her (energetic, sweet, child-loving) daughter and a new babysitter for H. It's evident her bond with Hayden runs in the family. 

His Aide said he would have PT and OT that morning, so she'd mention it to them.  

I got a call from Dan while I was at work on Friday, and I was surprised and curious when he said, "I got some good news." After he gave me a brief rundown of his promotion, he said, "we'll have to celebrate." As soon as we got off the phone I thought about picking up a cake for him on my way home. 

There are lots of people who pitch-in during the help us get through the work/ school days. Our schedules are carefully orchestrated. Fridays, one or both of my in-laws will be at the house for H. 

Around 5:30 I pulled in the driveway with a couple of pizzas in the stifling back-back of my truck, and a salad and cake under the AC on the floor of the passenger seat. Which, by the way, when I ordered the latter, a cake decorator at the grocery store bakery asked me how to spell congratulations. 

When I walked in the house Dan was finishing up telling his parents about the good news. I am pretty certain that before we even sat down for dinner, I realized that Hayden's limp was more severe. Once I said something, Dan agreed and said he couldn't believe he didn't notice it when he got home. I think it's understandable that he was distracted (albeit, happily). 

Saturday morning, when Dan and Hayden left for their weekly diner breakfast I savored my weekly opportunity to stay in bed. Typically they go on Sundays, but the next morning he'd be leaving early for a day of golf. I was just beginning to get ready for a bridal shower when they arrived home. (A childhood friend of Dan's is getting married in about six weeks.)

By this time, the gate and limp in Hayden's pirate-like walk was very obvious. And his out-turned left foot quite prominent. 

After I arrived at the shower, but before the bride got there, Dan texted me to call him. The pediatrician said that the area should be x-rayed and if that comes back normal, he'll need bloodwork to check for lymes disease and a few other ugly things scribbled on the script. 

Dan and Hayden took a lunch break from what lay ahead.

Within the next couple of hours, I had wished the shower was literal. Between the stressful updates from Dan and the unfortunate broken air conditioning in the party room, I was literally sweating. 

Dan (bravely, by himself) took Hayden to the hospital closest to our house. 

More than an hour after they got there, the text from Dan read, "They won't x-ray him cause he won't sit still. They're calling his doc."

I asked if he could somehow lay there with him, or if there was another technician available. The replies were "No" and "No" followed by, "Guy was a(n) [expletive] Hayden is freaking out. Having a great day." 

The next communication was a phone call that they were leaving the hospital. I asked if they were finally able to get any images or draw blood? His answers were "No" and "I wasn't about to put him through that after the nightmare with the x-ray."

By the time I arrived home that afternoon, Hayden was slumped to the side in his foam armchair. He looked miserable. Dan was on the couch wearing an expression that translated to I'm out of ideas and I'm exhausted.

I foolishly got on the phone and called the hospital to ask if they could give me an approximate wait-time for the ER. Then I called a different hospital (approx 35-40 min away) and asked the same thing. 

Both responses were, "an hour or more," and one followed by, "it could get worse or it could get better. Unless you're here at 3 in the morning...I'm not being sarcastic... it's difficult to say."

I decided we should drive to the other hospital, to avoid returning to the scene of that morning's situation. This is one of the hospitals owned by the healthcare company for which Dan is a part of their technical support. He maintains a certain number of software systems that hospitals rely on, such as patient applications, bed tracking, etc.  (Interestingly enough, the hospital that is only 10 minutes away from us was recently acquired by this healthcare company as well.)

Having access to employee parking areas and entrances certainly made getting into the building somewhat quicker and easier. Or it seemed so, anyway. At the very least, it was nice to be led by someone who knew exactly where they were going. 

Let's just fast-forward past the the whole registration process and getting assigned a patient room in the ER (before which Hayden went to the bathroom out of nervousness).

Four nurses entered the room, prepared to do the blood work. One of my blog posts last month, titled "another aspect of personal hygiene", outlines the horrific experience of grooming Hayden's nails. This was worse. 

The hospital bed was raised above countertop height, and there were two nurses to my left, and two nurses across from me. I believe Dan was at the foot of the bed, but my eyes were closed. Standing on an angle with my calves clenched, I was leaning towards Hayden with my chin just barely resting on his left shoulder. 

As his panicking cry escalated, and he was nearly choking, the voices of everyone trying to calm him grew louder. With my right palm rubbing his back and my left palm resting against his chest, amidst the surreal scene I whispered to him. I don't know whether or not he could hear me, or register anything other than a needle puncturing his arm and being forced to stay still. 

In between kissing the tears on his cheek, I breathed the words "I'm so proud of're doing a great job...I love're okay...almost done..."

I don't know how to begin describing the transition to the x-ray room, but I can tell you that it was an unsuccessful attempt and we ended up back in the patient room. 

I am certain that I communicated to the pediatrician who first saw him, that one of us would have to put a vest on and lay with him because he would never be still. I explained that we needed to do whatever we could to avoid a repeat of this morning. There was no way I was leaving that hospital without both of the tests completed.

This information may have not made its way to the radiologist. I don't know-- what I do know, is that she (the radiologist) was not a very good listener.

As I stood beside the x-ray table while my son was trying everything possible to get out of Dan's hold, I attempted to recap my conversation with the pediatrician. The radiologist repeatedly interrupted me with, "I know, trust me, I know... I been doin this a lotta years and I know."

When she walked across the dark, cold x-ray dungeon to grab a miniature rubber duckie, at that moment I KNEW something too. She was in fact talking out of her ass. Which is exactly where I wanted to shove that damn duck as I watched her approach a terrified, still-crying Hayden in an embarrassing (for her) attempt to use the stupid thing as a distraction. As if it would calm him that she was pretend-playing with a bath toy. A BATH TOY. In an absurd voice she pretended to be speaking for it, and said, "I want to get x-rayed, too!"

Hayden actually stopped crying for about two seconds. In complete shock. Then his panic resumed worse than before. 

It was shortly after this, that the flappy-mouthed radiologist was quiet as we walked back to the room we had been assigned in the ER. While we waited for next steps, we had to change Hayden again.

They ran tests for another patient, and then came back to us. When Flappy-Mouth returned, she was accompanied by a doctor already wearing a protective vest. I bit my tongue to avoid the "I told you so" from slipping out of my mouth. 

If someone had been listening against the dungeon door they would have thought Hayden had been locked in there with Hannibal Lecter. 

While the one doctor wearing the protective vest tried to keep Hayden's legs steady, Dan (also "vested") was beside the x-ray table completely sloped over Hayden to keep his torso still. 

I was behind a three-sided area with the cruddiologist. Almost ceiling-height glass separated us from my son. 

Needless to say he was once again thrashing about, screaming and crying in hysterics, and purple-faced. 

When they had to pull Hayden's pants down and force his legs in a frog position to get the image of his hips, I saw him spring-forward in an attempt to sit up, throw his head back, jaw dropped... and no sound came out. 

This was a reaction to vulnerability, not pain. His fear of not being in control, and not knowing what to expect. 

A second later, after he caught his breath, the desperation that released from this child's mouth was not something I care to dwell on any further. In fact, from this point forward I'd rather forget it ever happened.

At this point they thought they were done, and I said, "you already got his foot and his ankle?" The cruddiologist answered, "They didn't put the code for both." 

I heard her say "hips" and "foot", but I don't know what else. My brain was stuck on the expression of the other doctor's face.

"You should do both," he said. "We'll need both." 

"I can't without the request," she answered. 

"I'll have them change it," he said. 

"Ok," she said, and then took a step back from the cockpit of keyboards and monitors to signal that she'd wait.

Hayden continued to have a nervous breakdown, and as the other doctor walked towards me and the cruddiologist, Dan was now on the battlefield by himself. 

The doctor angrily replied to the radiologist, "then I'll go get it now!" We didn't resume the torture until the stupid piece of paper came through the printer to confirm the complete x-ray. 

When they were finally done for real this time, my wet cheeks alerted me to the fact that apparently I had been crying. 

Even though it was over, Dan was still struggling with Hayden to calm him enough to get his socks and sneakers back on. Through his short gasps for air Hayden repeatedly cried, "Get pize now?" The "pize", for "prize", was louder every time he said it.

At home he gets a prize when he cooperates for something exceptionally difficult for him to tolerate. Or, to acknowledge an accomplishment. So anything from accepting medicine to sitting on the toilet.

Still frozen in the same spot where I was initially instructed to stand, I heard the cruddiologist talking to herself as she was scrolling through the x-ray images on one of the monitors. Barely paying attention to anything on the screen, she shook her head at nothing in particular and said, "I seen tough. I seeeen tooough." 
She paused. "I ain't never seen tough like that."

I don't know what kind of noise was still going on around the x-ray room, but for me, after that it was all silence. 

The blood test results came back negative. The x-ray images all normal. The conclusion was that it may be a sprain, but it will be a few days before we have the lymes disease results.

At this point we were just waiting for the discharge papers, and they mentioned something about giving him ibuprofen in case of swelling. 

A young nurse with skinny eyes, or maybe it was the iridescent shadow on the complete surface area of her eyelids (which seemed entirely too far from her brows), came in to force some of the liquid orange medicine down Hayden's throat. With my permission, that is. It's the only way. He gagged, choked, threw up, and then we were done. It was over.

During the drive home I wanted to keep turning around to check on Hayden, but I could barely tolerate the sight of his his wide-eyed comatose expression. 

Even though it was well past his bedtime, I think it made US feel better to stop and get Hayden a "pize". While Dan was in the store, Hayden and I waited in the car. He was silent.

I believe a good five minutes passed and he started to say something that I couldn't quite decipher. But he held out his arm with the patient ID band, and I figured he needed a visual confirmation that we really were done with the "hos-pal". 

I asked him if he wanted it off, as well as the cotton on the inside of his elbow. He said yes. He flinched as I removed the surgical tape, gently as I could with lotion on my fingertips. When it was off, miraculously, one side of his mouth curled up to a half-smile. "Thanks help, Mom" his voice cracked.

That was all I needed. I let out an exaggerated exhale for both of us. 

I know Hayden is so much stronger than I'll ever be.


  1. Oh My Good Grief. What a horrifying story, but thank you for sharing it.

  2. I think hospital staff should have different protocols in place when treating patients with hidden disabilities, such as fragile x or autism. Maybe they do, and it all depends who ends up helping you.