Wednesday, March 5, 2014

“You’re Here Too Much”

After spending all morning at Cook's today for Madison to have a procedure done, I remembered that I had written this post and in my busyness, failed to post it back in November when it was written. Working on getting back into the swing of things here on the old blog. It may take a little different direction from here, but it desperately needs to be revived.

Cook Children's Hospital
Ft. Worth, Texas
November 2013

Cook Children’s, compared to other children’s hospitals we have been in, is medium sized and laid out in such a way that we run into many of the same people in the hallway, regularly. It is also...probably because of this main hallway concept...a place where we see not just our nurse’s and child life specialists, but also our doctors. It’s also an incredibly friendly place, so these amazing professionals don’t hesitate to stop and say hello.

Occasionally see celebrities too!!
Garth Brooks with Chanel,
one of two therapy dogs now in residence
 at Cook Childrens

The truth is, we spend a lot of time there, wandering the halls from point A to B, and sometimes just wandering as we kill time between appointments. Add in our volunteer time, and yeah…

We are there frequently, and we see some of the same people in passing more than others, with our Palliative Care doctor being one of them.

He always smiles and acknowledges us, and always appears to be on a mission to get somewhere expediently, so we smile, say hi, and move on.  This week though, the comment was not “Hi, nice to see you.”, it was…

“You’re here too much.”

And the truth is, I couldn’t read the intent behind it.

As in, was he saying this out of concern for us? Was it directed at me in an accusatory way? Or, was it just an observation?

I really don’t know.

At the time my thought was, HA!! You have no idea!! We see him, in passing maybe once every 4 or 5 times we are there. And even if, out of curiosity, he’s checked the schedule to see what it looks like, he doesn’t know about the times we are there for volunteer activities, or unexpected appointments. He really doesn’t have a clue how much we are really there.

And then I wonder, what if he did actually realize how much we are there?

The truth is, this schedule we are keeping is not happening without contemplation. There is a rhyme and reason if you will, and while it remains something that should be regularly re-evaluated, there is little that happens in our lives that I have not considered in great detail.

Early last year we were in a difficult place. Madison was quite unwell and really needed to be inpatient, however, the specialists we needed to be involved were at two different hospitals here in town, and our pediatrician and I spent hours contemplating what was the best course of action. Ultimately I decided that we honestly did not have a place to go where her needs could truly be met…where I was not likely to be insane from the experience, and most likely bringing her home no better than she went in. I realized in that moment that while our way of doing things had worked remarkably well for a long time, we were moving into a place in this journey where having a “home hospital” was critical to the kids care.

We will always be split to some extent, with our Houston team needing to be a part of what is going on, but here locally, it was time to commit. Our local team was too scattered, and as coordination of care became more important, this scatter was hurting us, not helping us. We needed to pick a “team” and go for it, as scary and overwhelming as that seemed at the time.

So as I cared for my daughter here at home, with the support and guidance of our pediatrician, I formulated a plan to slowly and deliberately start building our team at Cooks. We already had some awesome, key doctors there, and it is definitely the hospital I prefer being in if we need to spend some time inpatient. So while not the closest hospital, and not the hospital our beloved pediatrician has privileges at, for a whole host of reasons, it is where we need to be.

Iron infusions x 2

This decision comes with sacrifices (don’t they all), and in this case, we went into it knowing it meant more time on the road, being further from home, for more hours than we had been. It meant being patient as I worked with schedulers and found ways to get more than one appointment scheduled in a day to make it a more worthwhile trek. It meant building a support system there that allows us to incorporate the fun, worthwhile things to do as we accomplish the medical side of our lives.

Construction wall the kids have helped paint

This decision also comes with some awesome advantages!! Some we have seen, some we are still working on, but the potential is there. It is truly becoming our “home hospital”, in more ways than it being where the bulk of our doctors are…

and this is vitally important.

This place, where there is the potential of spending hours per week, needs to be more than just a building and medical professionals…needs to be more than just a place where we know we can get good quality care. Unknowingly at the time, I have come to realize that a “home hospital” needs to be a place where…wait for it…

we feel AT HOME.

Where there is, at least potentially, more to be had from a visit there than good medical information (as vitally important as that is). As strange is it may be to contemplate for most, the reality is, when you spend half or more of your life in the medical world, it’s in the medical world that you find your friends.

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