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.
And through it all it was essential to us to make sure that neither she nor her sister knew just how worried we were, but tensions were indeed high because we still didn’t know what we were dealing with. To top it off, in December we had gotten a test done on Alexa to try and rule out Cystic Fibrosis as the cause of Alexa’s lung troubles. As always, both my wife and I did extensive internet research when told we should go through this testing, and it understandably freaked us out. We just wanted to know what was going on, and then we were told we would have to wait a month for the test results.
Needless to say, it was extremely difficult to hide the huge emotions that were overwhelming us then. And both of the girls could probably sense it. But there was literally nothing we could do about it but wait. And as Tom Petty so accurately put it, the waiting is the hardest part. We waited to see if our vibrant young daughter would have to deal with a debilitating illness that would affect her for the rest of her life.
A month later, we were still waiting…