Heartsick

Utterly heart-sick.

There’s not a better description for it.  After months of anticipation, doctor’s visits, and an emotional roller coaster, we were less than two weeks away from cochlear implant surgery…and then we weren’t.  There was nothing we could do to prevent Gaige from getting RSV, and nothing we could do about his surgery getting pushed back.

In the grand scheme of things, it wasn’t so bad. The RSV was very mild, and it definitely could’ve been a lot worse. The surgery wasn’t cancelled all-together—just pushed back 3 extra weeks.  I keep telling myself that if God delayed the surgery, then Gaige must’ve needed those extra weeks. Everyone keeps telling me that it’s not that bad, and it’s just a few more weeks, but that honestly makes me feel even worse.

I shouldn’t be this devastated—after all, in the grand scheme of things, it’s not that bad—but I am, and my heart hurts.  There are so many reasons why this is just a set-back for me:

  • We’ve been waiting and waiting for months! The surgery was in less than two weeks—just days away. We were so close that I could taste it!  And then all of a sudden, it was ripped away, and had to start waiting all over again.
  • We knew Gaige would have Medicaid through his first birthday, but we weren’t sure if he would qualify to keep it after that. With his surgery and device activation happening right before his first birthday, we no longer had any room for another delay. If something happened to delay his surgery further out, there’s a very strong chance it could be billed solely to our private insurance, and we could be left with a very hefty out-of-pocket price tag.
  • We were supposed to go to a weekend camp for the families of newly diagnosed deaf children. It included several informational sessions and panels, which is great—but the real draw for me, was getting to network with other families/moms going through the exact same thing as us, at the same time. With Gaige having a viral infection, we could not risk exposing him to the other infants, and decided to bow out. A once in a lifetime opportunity for us: gone.
  • Talk about a scheduling nightmare. Trying to cancel all of Gaige’s appointments, and reschedule them, was awful. Admins would assure us that someone else was supposed to call us to reschedule this and that, and that it wasn’t their job…but we had no time to wait. We needed to know now, so that we could make sure we got the time off. My job is more relaxed, as far as scheduling time off, but I don’t have much time to take off. Adam has a lot of PTO available, but he is required to go through official channels through a third-party company, and it’s not as simple as telling his boss when he needs time off. He now has to completely cancel everything he took off for the next month, and try to move it to March, which of course is a much harder month for him to schedule.  He has several things at work, which he simply cannot miss, and that effects when we can schedule things, and the amount of time I have to take off now vs. before.  Then there’s the judgemental tone of pushing a two-week follow up, to three weeks, because we simply cannot make the two-week, now that the surgery date has been completely changed.
  • Because of the surgery change, Gaige’s audiologist, will not be available for his initial activation. We will have to sub that first appointment, with a different audiologist, who will be there to help and catch our audiologist up the next day.  Maybe this sounds a little silly to complain about, but we love Gaige’s cochlear audiologist, and really wanted her to be the one there for Gaige’s activation.

Adam has been amazing through all of this.  As someone who is a total man’s man, and sometimes struggles with the emotional support bit, he has nailed it. The day I found out his surgery was being pushed back, he called on his lunch break and on his way home, just to check and seeing how I was coping.  When he got home, I was the first person he acknowledged as he walked through the door, and he wanted to see how I was.  I don’t know how people make it through life, without the Adams of the world.

My saving grace through all of this, is that my Gaige is blissfully unaware of what is going on.  He has no idea that he has a surgery that is being pushed back, or about the journey that he is about to embark on.  With the exception of feeling sick from the RSV, he is just as lovely as ever.

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