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.
It was a crazy schedule for me, and for Heidi too, but I would argue it was craziest for Madeline. She hadn’t spent much time in her life apart from Heidi so it quickly became, “Miss mommy.” I would look into her sad little face and snuggle her up close to me, because, honestly I had no idea of our timeline and of when she would get to see her mother again. Eventually I was able to bring her to the hospital on what turned out to be surgery day, and she was able to spend some time with her sister and with her mother, but it reminded me once more of why the family unit is important, whatever the family unit happens to be. That visit proved to last her until the two of them finally came home two days later.
And after we got Alexa home it seemed like the questions would end, but instead we discovered a host more of them, and then the therapies began…
Sam
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