I have started several posts about our time at the hospital for Lil' Bit's surgery, and may or may not get around to finishing and posting them. For now, we'll talk about today. Today was to be our triumphant return. Discharge day. And it was. Sort of. We are all home and, although totally exhausted, we are doing fairly well. But I relearned a few lessons today.
First, I relearned not to make assumptions. This lesson came upon the discovery that I had, in fact, made a giant assumption. I did not realize I had, but I did. I had assumed that surgery would "fix" my child. Sure, it would be difficult and emotionally taxing and recovery would be hard. But, in the end, surgery would either fix my child, or it wouldn't. I never considered what would be involved during the waiting to find out period. You know, the period where you get to bring them home, but you still have to give them meds. That's right meds. It never occurred to me that when I brought my child home she would be on medication, let alone three different meds multiple times per day. Oh, and did I mention that they all tend to make her vomit? We have learned a few tricks and most of the time they work. But today we had 5 administrations for 3 doses, and lots of "clean up on isle mommy." I hate holding my screaming child and trying to get her to take medication I know she needs. I really hate having to do it 6 times per day. I'm freaked out that I will have to start doing it 8 times a day once the third med finally arrives. Yeah. About that third med. It's one of those black box medicines that I will need gloves to handle because I've signed up for another round of IVF and we will have to use separate syringes and pill crushers for. *sigh*
As I sat on the floor, trying to be calm (but probably failing miserably) during the last medicine administration, I got angry and couldn't quite figure out why. Until, thud, it finally hit me that I had made this giant assumption that once we brought her home, even if she wasn't fixed, we would be done for now. I don't know why I never considered ongoing treatment such as meds, I just didn't. And, quite honestly, I'm just thrilled that she didn't have to come home with an NG tube (and even more thrilled that I didn't have to be trained how to put one in and take one out)!
This leads me to my second assumption. I assumed that I was prepared to have her home. I expected the
return home to be a great relief. Instead, I felt the same panic as last
year when I brought home a newborn and wondered what the heck I was
supposed to do with her. The panic is the same, but the specifics are different: What happens if she still won't drink whole milk or Pediasure? (This issue is the subject of a post in progress about poor planning on my part). What happens when she vomits up the meds at home? How do we get her to take them when all the tricks we learned failed? How long after taking the meds does vomiting count as not having gotten the dose? (Apparently, the answer to this for our purposes is 20 minutes).
All of these are difficult things to handle by themselves. Doing them on little sleep, after a long day of travel, with nerves and emotions still raw from 2 1/2 weeks of adrenaline and anxiety, is damn near impossible. And yet, we managed to get her meds in her, give her a bath, and get her to bed. We have overnight meds we have to set an alarm for and lots of other challenges ahead of us. We're creating a chart so we can track and make sure we have given her all her meds-- a necessity, since we're lucky to remember our own names these days.
But we're home. And she's doing amazing. And we're taking things one day at a time. Which is, in fact, the only way anything can be done. We live life, whatever challenges, joys, successes, and sorrows come our way, the only way we can. One day at a time. One minute at a time. One moment at a time. Sometimes, though, it takes a giant 2x4 upside the head to remember that lesson. And man, do I have quite a headache.