Monday, February 3, 2014

So we took a road trip....

Last week, Harper, Nick and I headed out for Kansas City. It wasn't a trip for fun, but it was the first time I'd ventured out of Wichita since arriving in September. It was good to see a different flat, brown landscape for a few hours.

We went to KC for Harper's first appointment at the spina bifida clinic at Children's Mercy Hospital. It was basically an all-day affair. We stayed in a hotel. We ate in restaurants. If Harper hadn't been so sick with a cold, she might have actually enjoyed our little quasi-vacation.

As it was though, she just felt rotten. She was a trooper though, and handled the revolving door of nurses, doctors, social workers, dietitians, physical therapists and orthotists quite patiently. Really wish I could say the same for myself.

We never had this experience in Tennessee where you have to be Medicaid eligible to qualify for a special care clinic like this. Since we weren't, we got to coordinate all those disciplines separately and schedule individual appointments with each doc or clinic or therapist or whatever she needed at the time. We drove to Knoxville and Nashville a lot. In Kansas, we come to clinic only once a year, unless something comes up. It's obviously much better.

Even though it was much more convenient, my head was spinning when we left. We got a lot of information, met a lot of people, discovered doctors we liked and others we didn't and determined the hospital's parking garage is an impenetrable fortress that seriously needs way finding signage. And this is coming from two people who used to work at Holston Valley Medical Center, which everyone from Kingsport will recognize as the world's most confusing hospital.

Most significantly, we decided that Harper will have surgery this summer to correct congenital deformities in both her feet. It's been a year since her last surgery, and surgery number 11 is now on the horizon. No reason for worry. We've done this plenty of times before, right? Wrong.

Because the surgeon will actually break her foot and ankle bones to realign them, she'll have to wear casts on both feet for six weeks and then protective braces for a few weeks after that. You're right. Holy four-letter-word is the correct response here.

At least the surgeon had the courtesy to point out that her recovery won't be any fun. Some surgeons describe procedures not unlike an oil change or tune up. I honestly had a surgeon describe a procedure not unlike this:

"Well, I'll just have to get in there and open her up and see if I can find her appendix. The whole thing shouldn't take too long, and she'll be up and running around again in a day or two."

I've known for some time that we would have to surgically address Harper's feet, but I had hoped it wouldn't be this soon. The orthopedic surgeon made a good case for doing it sooner rather than later so we can keep her upright and walking. Waiting til she's older risks skin breakdown and pressure sores in her feet which would prevent her from walking at all. Not good.

I still haven't figured out how this "Harper can't walk" thing is going to work. We've never had a truly handicapped accessible house since she can negotiate most places fairly independently. We may have to make some temporary modifications to the house so she can get around safely in her wheelchair, and I don't have to hire a live-in chiropractor to keep my back functioning.

She took the news of her impending surgery with as much grace as a five-year-old can muster. She's not thrilled, but seems to understand we wouldn't ask her to do this if it wasn't absolutely necessary. (And I promised a really good gift. The Barbie Glam Jet was mentioned as an appropriate reward.) Of course, she hasn't yet realized that she won't be able to swim, ride a bike or play at the park for six long weeks. I'm not going to clarify that point until I absolutely must.

No, it wasn't the surgery that left the biggest impression on Harper. It was the meal we had while driving KC. We planed to stop for dinner once we got on the road, but we quickly discovered there's just not a lot between here and there. Our dining options were limited to say the least.

Lucky for us, we happened upon a buffet restaurant called the Sirloin Stockade in a little town called Ottawa. It seemed similar to a Shoney's or a Ryan's. It was crowded for a Tuesday night. Couldn't be that bad, right?

Admit it - you would have eaten here, too.

Holy heartburn, Batman! Nick and I ate some fried food, a salad-y mix of vegetables and cheese and bacon, and we each had a piece of apple pie. It wasn't healthy at all or even all that good, but it was sustenance. Harper had chicken tenders, green beans and mac and cheese. She was a happy little girl.

Her happiness increased exponentially when she discovered the chocolate fountain on the dessert bar. She has told anyone who will listen about the chocolate fountain. She's a fan.

I did a little research on the ol' Sirloin Stockade after our visit and discovered why it was so crowded that night. As one Facebook reviewer wrote:

"there's not much choices here in ottawa. but at least we have this one :)"

Yep. That sums it up quite nicely.

But given we'll be making additional trips to KC in the coming months, I daresay we'll be frequenting the Sirloin Stockade again. And since sticking a pink marshmallow into a fountain of melted chocolate brings my little girl such joy, I'll happily eat here as often as she likes - or my intestinal tract allows.

And because I didn't manage to take any pictures anyone would be remotely interested in during our trip, here's a look at Harper during several of her previous surgeries.

This was right after her back closure. She's still on a ventillator and probably about three days old.

This was after her shunt malfunctioned. It was removed and externalized until her cerebral spinal fluid could be cultured. She had another surgery to replace the shunt three days later. She was five months old.

This was her most recent - and hopefully last - facial surgery. She's not as puny as she looks in this picture. I think she was mad because I made her stop playing to take a photo.
After surgery to place a MACE for bowel irrigation. She was pretty puny here, but she hadn't eaten anything but Jello for three days.

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