Surgery Monday
Reuben’s surgery to place a g-tube has been scheduled for Monday. We’re meeting with the anaesthetist at 1:00 and the surgery will be at 3:00. It’s all supposed to be very straightforward. Given Reuben’s chronic lung disease, they want to do general anaesthesia so Reuben can be intubated and if anything should go wrong they can immediately provide respiratory support. To me, it’s a sign of what a strange year it has been that my main question was what kind of ventilator they wanted to put him on — last year at this time I don’t think I knew what a ventilator was, and now I wonder about the benefits of various kinds!
We’ll stay overnight in the hospital and bring him home on Tuesday.
This wasn’t an easy decision for us, but after talking with Dr. Klein, our family doctor, the OT, and a nurse from a program in Virginia that specializes in weaning kids from feeding tubes, we concluded that it’s probably best. When we realized that the only reason against it seemed to be Eric’s and my reluctance to do it, we decided we should go ahead. The OT felt that she had gone as far as she could with Reuben while the NG tube is still in the back of his throat — that at this point, the NG tube itself is a big part of Reuben’s reluctance to eat. This was verified a bit by our observation that he ate much more the week we had the feeding tube out — but still lost three ounces. So he’s not ready to go cold turkey without any feeding support, and we can’t take any risks with his calories at this crucial stage of development.
I think it was hard because we’ve also never felt that any of the decisions about Reuben’s care were really ours to make. When he was very ill, it was plain that we didn’t know anything about how to save his life, and the doctors did. Everything was so critical and plainly needed to be done. I remember waking up the night after Reuben was born (almost exactly a year ago!) about 2 AM and going down to Reuben’s room in the NICU. All of a sudden this guy (who I later realized was a resident, but at the time I didn’t even know who all the people were) materialized at my side with a form that he was sort of sheepishly but persistently asking me to sign — it was retroactively giving them permission to give Reuben a transfusion he’d gotten almost immediately after he was born. Even if it hadn’t already been done, there would have been no question in my mind. And then the day Reuben’s lung collapsed and they wanted to put him on ECMO, one of the residents came up to me and Eric while all of the surgery preparations were being made and one of the fellows was saying, “We don’t want that stat, we want it emergency.” The resident started to go through the list they legally have to tell you, of all the risks and benefits of the procedure, and I just cut him off and said, “Whatever. Where do I sign?”
So, it’s been strange to be back in a decision-making role for Reuben. And there are ways in which we still know that the doctors know more about certain things that we do. The GI doc was telling us that they probably wanted to do general anaesthesia because of Reuben’s breathing issues, but that they’d have the anaesthesiologist call us to talk about it. Eric and I just looked at each other and said, ” That really wouldn’t be our decision; we would rely on Dr. Klein’s advice.” But Eric and I both felt strange that they would think of leaving such a decision to us — we’re not used to it.
It’s all a little frustrating because we (especially I) feel that Reuben’s feeding issues were not handled as aggressively and comprehensively as they should have been from the beginning. But maybe that’s not true, I don’t know. At any rate, we can’t go back in time; we have to move forward from where we are now. So hopefully the surgery will help us do that.
So, once again, please play for Reuben on Monday.
Love,
Jonna
