Our stay in the hospital is now approaching 11 weeks. Allow that to sink in for a moment: 11 weeks. For much of that time, we have been (relatively) spoiled. Ayden was doing exceptionally well. He was taking all of his food and medications by mouth. There was absolutely no discussion of any permanent feeding tube. For about three weeks, we basically had one foot out the door. All we were waiting on was getting the arrhythmia issue figured out. Then, three weeks ago, everything fell apart. Now, it's as if we are starting all over again, except with new and different challenges. And it's really testing my breaking point.
Learning the hard way that Ayden is living his life on the precipice has put me on it right there beside him. I am somewhat skittish around him now, although not as much as I was while he was still in the PCCU. I was used to a child that only had two things connected to him when I picked him up. Until recently, he had as many 6 or 7 lines going in or coming out, some in very scary places. I was fearful of picking him up, messing up something, and doing him serious harm. Over the weekend, as he was suffering through some major refluxing, I was worried I might jostle him and cause him to vomit.
His massive fail at his first swallow study after his arrest was a huge source of stress. My reaction to this area is mostly selfish, as I am scared of the idea of him having a g-tube in his side that I would be responsible for managing and monitoring. Feeding him by bottle is just so much easier. Not for him, but for me (eating for a baby, especially one with Ayden's condition, is like you or me running up and down a flight of stairs for 10-20 minutes). A huge weight was lifted off my shoulders when he passed his second study. (If he didn't have a history of being a bottle feeder, I'm not sure the doctors would've given him a second chance. I know he wasn't getting a third.)
The passing of Monday's swallow study gave us the green light to work on his bottle feeding again, just like we did the last time - start small and work our way up to full feeds. Several things, however, have conspired against us since then. Getting his PICC line in has basically cost us three days of practice. He had to go NPO Monday night because he would get sedation Tuesday morning when the line was put in. Sedation issues - sleeping through practice time, withdrawal, vomiting, dependency, etc. - carried over all the way into early Thursday morning. Later in the day yesterday was really the start of his practicing. While he is still doing some things well - he can latch on fine, his suck is strong - he still has a ways to go to get back to where he was. I don't know if his coordination hasn't returned yet, or if all of the coughing, refluxing, and vomiting he's gone through over the last 5+ days has made him scared of having liquid in his mouth, but right now he will take a couple of pulls from the bottle, hold the formula in his mouth instead of swallowing it, then freak out once too much accumulates. I have no idea if he can get this worked back out. If he can, I have no idea if he'll be given the time he would need to get there. Once again, the (still selfish) fears of a feeding tube are creeping back in.
In the grand scheme of things, I know these are all relatively minor issues. Once they start piling up, however, it wears you down quicker than you realize. Add in some extra ingredients - spending most of your time in a hospital (a stressful place, even on a good day), not seeing your wife enough, almost always being by yourself, not eating regularly, not sleeping regularly - and you have the perfect recipe for a breakdown. While Allison's breakdowns go in the "sad" direction, I get very testy, frustrated, and borderline angry. I had to apologize to one of his nurses over the weekend who had to deal with me in that state, especially since it had nothing to do with her.
I guess I have finally reached the point where all of this is just beating me down. It's winning the battle in my head and in my heart right now. I have tried to stay on an even keel, not just for my own well being but for that of Allison and Ayden, as well. I have tried to be the calming force in an otherwise violent storm. I don't feel at all calm right now. I find that I'm on pins and needles almost all the time. My heart jumps every time the phone rings.
I am so thankful Ayden is still with us and, by all objective measures, again doing well, but I have come to fear and loathe this existence. His second surgery simply cannot get here fast enough.
My heart aches for you.
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