Category: children

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Disturbance at the Heron House: Volume 3

tumblr_lbajisxTfT1qc4y1yo1_500_large…and we were still waiting.

My wife heard back from the doctor a week after the testing was done to see whether or not Alexa had Cystic Fibrosis, and the word back was that the test was inconclusive. They would have to do genetic testing to see whether or not she tested positive, and in the meantime we would have to keep waiting. Over a month later and we were still in that holding pattern, completing the treatments twice a day, and dealing with the weight of knowing we were one step closer to our child possibly having CF, something we were supposed to be “simply ruling out” with the initial test.

And during that time period we worried. What you need to know about my wife is that in our relationship she’s the worrier on the outside, and me, I’m the worrier on the inside. I might look like I’m doing just fine, but underneath the facade I’m freaking out. In fact, sometimes I just sit still and shake because I’m so worried. It happened when I was so worried that Madeline might have DS, but then when she tested positive for it it was okay. I was able to deal with it, and I figured that would be the same way with Alexa and the possibility of CF. The possibility worried me a lot more than the actual diagnosis, because if the diagnosis came back that she had it then I could make a plan, then I could deal with it.

But Heidi, she worries from the start, and it shows on her face and in her demeanor. Reading about all the issues that children with CF have, she had driven herself into the cycle of “what if.” And don’t get me wrong. I’m not saying her way of dealing with it is wrong. It’s just different how we approach things, but we eventually get to the same place. If that place is acceptance, then we work on it, and if it’s a sigh of relief then we sigh at the same time. We were both preparing ourselves for the possibilities during that month, just in our different ways. Continue reading “Disturbance at the Heron House: Volume 3”

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Disturbance at the Heron House: Volume 2

Quotation-Napoleon-Hill-failure-adversity-Meetville-Quotes-12088…and then the treatments began.

The night I brought my wife and daughter home from the hospital we were still in flux. Yes, the surgery was done, but in order to let them go home the treatments had to already be set up, the equipment had to be scheduled to arrive at our home, and both my wife and I would have to be trained on it. It was such a small window, but we dotted our i’s and crossed our t’s and were able to go home.

Alexa couldn’t go back to school for an entire week, though, so there was also a reshuffling of schedules to accomplish that. During this whole time, too, Madeline knew things were different, and she was incredibly needy. It was very tough for us dealing with Alexa and the new therapies, dealing with Madeline and her new clingy-ness, and trying to wrap our brains around what the future might hold for us as a family.

When the therapist showed up with the “vest,” there was a lot to learn: from plugging it in correctly, to connecting the tubes properly, to running the machine through its programs, to even breaking it down in order to put it back in the case. The program took 22 minutes to cycle through with each treatment, and Alexa kept saying that it bothered her by making her itch with its vibrations. But we knew it was necessary to try and get her lung healthy again. Continue reading “Disturbance at the Heron House: Volume 2”

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Disturbance at the Heron House: Volume 1

Look at those smiles.

I am constantly astounded by the resiliency of children, the way they can adjust to just about anything, no matter how odd it is or how much it differs from their previous pattern, even my children. Now, if you know my children at all you’ll realize that they are pretty rigid in the things they do and like. For example, my 5-year old, Madeline, likes to play CandyLand, followed by Chutes & Ladders, and it has to be in that order. She also likes to try and cheat at both, but we’re working on keeping her honest. My 7-year old, Alexa, refuses to eat homemade macaroni & cheese (unless bribed with the promise of some sort of desert at the end of the mac and cheese rainbow), but she absolutely adores boxed mac & cheese with the fake orange “cheese.”

They are both also relatively stubborn when it comes to activities to do. Alexa likes to be in charge, but Madeline is not your classic follower. If there’s something she doesn’t want to do, she just won’t do it, even if they’re in the middle of it already. So, when Alexa came home from the hospital after her bronchoscopy in November, it was interesting to note how quickly both of them adjusted to the new way of life around here. I’ll explain…

  • Alexa had to have two “vest” administrations per day, one in the morning and one at night. The “vest” is an actual vest that inflates using two tubes attached to a powerful little machine that pushes air into the vest. It operates on escalating levels of what equates to vigorous shaking of her body in order to break up whatever mucous remained in her left lung.
  • Alexa also needed to have various inhalants as treatments, all of which were designed to open up her airways so that when the mucous was broken up by the vigorous shaking it would come out of the lung altogether and she would aspirate it. These treatments were also twice a day, and generally took place at the same time as the vest treatments.
  • During all of these treatments Alexa was far and away our focal point, which was a massive change from how things had been to that point. Because Madeline has Down syndrome it had become routine to focus on her health more so than the health of Alexa, and the issues that sent Alexa to the emergency room and then to surgery woke us up to that.

While Alexa was in the hospital, my wife Heidi stayed with her for the entire five tumultuous days, and I was back and forth from the hospital, to home, to work, and back to the hospital. It was ironically reminiscent of when Alexa was born. We weren’t sure of the time of her operation, or even what we were really dealing with for a while, and during the whole back and forth Madeline was with me, and then with her grandmother, and then back with me. Continue reading “Disturbance at the Heron House: Volume 1”

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Those Strings of Tension

tumblr_l3x5vcFP271qzklmoo1_500Monday night couldn’t get here soon enough. First they told us probably Monday morning, then it was “sometime after four,” and we were hoping for four but we knew it wasn’t to be, and then the final time quoted us was six o’clock in the evening. We had been in and out of Alexa’s room all day, playing the waiting game, a game that no one wins. And it would have been easy to give in to the impatience that had been building all day long, but we held strong somehow, even if that strength happened to be a fragile one. They had given her no food since seven o’clock on Sunday night, in readiness for her procedure, but as the day stretched on and we found out the “four o’clock” timetable, we were definitely not pleased because it meant no food for the entire day, and Alexa was starving by lunchtime while everyone else was able to eat. I felt horrible for my little one.

Then the doctor came in at 4:30, while the strings of tension were stretched tautly, and told us the final aim was for six that night, and because it was the first time we had actually seen someone in scrubs who had obviously just been in the operating room, or because we were just all out of steam, we believed him. And like clockwork things were finally starting to happen as they should. The assistant came up with a wheelchair right around six to escort Alexa to the operating floor to get prepared for the procedure. Of course that didn’t sit well with Lex because she gets really anxious, so you can imagine even though everyone from nursing students, to nurses, to doctors told her she wouldn’t feel a thing, that she was going under general anesthesia, she still got so upset.

When I say upset, I mean upset, too. Continue reading “Those Strings of Tension”

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Saying Hello

Every afternoon when it’s time to go, she’s does her rock star approximation, flashing that beautiful smile and waving at everyone. “Bye, Lisa,” and “Bye, Mike,” she says as she is escorted out of the building, with everyone excited that she decided to speak to them. I am that escort most days and I smile … Continue reading Saying Hello