Any time you walk into a children’s hospital with your child, you know your life has the distinct possibility of being forever changed. Whether it’s for an accident, a chronic disease, or a mystery illness yet to be diagnosed, the hallways of those institutions of healing and hope can be a long walk.
I have been dreading our regular three-month cardiology checkup for a good six weeks now. I just had a bad feeling about it. It wasn’t a bad feeling like something was extra-wrong with my babe, just a general annoyance with having to revisit his reality in regular intervals.
I remember the moment we were made aware of McKay’s condition I started an insatiable quest for information, names, connections, explanations, resources and on and on and on. But over the last three months, that part of me has shut down. Yes, I still keep my eyes and ears open, but something has changed and I have turned inward on my babe. As much as I want to give him the best options, the best resources, the best treatment available, I also feel a need to protect him from becoming ‘the sick kid.’ You know the one people stare at but don’t talk to, touch or interact with; the one people either feel obligated to ask about or avoid.
When people ask me about McKay I want to answer with a report about milestones centered on mobility, appetite, speech and all other things oh-so-15-months old. I do not want to assume the interested party expects me to lead with an update on our search for a surgeon, the latest cardiology report, prognosis, or plans. So I don’t. I say he’s fine. I call him a stinker when he’s a stinker. I’ve been more normal with him and it feels better.
Call it denial. Call it going numb. But I needed to change the focus. And going back into visit the cardiologist meant the pretending was over.
The usual weight, height and sat measurements were taken. 27 pounds. 29 inches. 79 on ¼ liter of oxygen. 68 on his own. Growth exceptional, saturations miserable. It was the same story we’ve been living off and on for the last year.
So the visit mostly centered on what’s next. And what’s next is 8-9 more months of oxygen as we wait for him to either take a serious turn south and require some unscheduled intervention or hold steady as tests are run and visits are made to a facility with a surgeon ready to tackle his case. While Primary Children’s touts a respected roster of cardiothoracic surgeons, they are still short a senior surgeon. Word is that the surgeons have met with the cardiologists on some of the more complicated cases such as McKay’s and they have asked that, for now, all Fontan operations complicated with dextrocardia be referred out.
Basically, being referred out means that we get to go shopping for a surgeon. When our card asked if we had preference for hospital, location or surgeon, I just said, “Yes, we prefer you find us the best surgeon.” I asked her to find someone who had done the Fontan in at least half a dozen dextrocardic kids with a good outcome. She said she thinks our best bet may be Children’s Hospital of Philadelphia (CHOP). But maybe Michigan. Or Stanford. Like I said, it’s time to shop.
For now, 2010 is shaping up a little something like this:
March 2010: sedated echocardiogram scheduled at Primary’s to do a full study of McKay’s heart and prepare a study to send out for review to candidate hospitals. (Apparently, many hospitals compete for complicated cases—that may play in our favor as far as getting access to senior surgeons.)
May/June 2010: Make initial visit to selected facility for work ups and pre-surgery heart cath.
July/August 2010: Fontan. Take our show on the road for anywhere between 2 weeks to who knows how long to get Mac re-plumbed and well enough to travel home again. The other monkeys may come for all or some of it depending on the location. I would love to make this some sort of “good” summer memory for them instead of “the summer when mom and dad left us.” I’m going to have to do some thinking on how to make that happen.
So that’s the latest. A lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been. In the meantime we’re just trying to keep Mac as happy and as untangled as possible. He is freight train on a short track and it’s a frustrating journey to watch. I spend most of my day chasing him around trying to give him enough space and slack to be himself. He’s a special little kiddo. I’m glad he’s mine. We will do right by him.