That was easy.

After learning about the MINI One button, a g-tube button with a lower profile and more ability to customize the balloon size for the wearer’s needs, I found out about the hoops to get it. Look in my past posts if you want to know more about that.

Katie and I took time out to go meet with a surgeon last Friday to talk about switching buttons- something that wouldn’t require surgery.

The new doc agreed that this was a simple process. She got a new button out, and showed it to me. It is smaller – not so small that it disappears or anything, but it stands off the skin maybe half as far as our MIC-key does. The underside has a gentle arc, so it hugs the skin better, without having any corners to it. It also feels considerably softer and more pliable. So that sells it for me. I am guessing this is more comfortable.

Katie's MICkey tends to sag a bit.
Katie’s MICkey tends to sag a bit.

Katie has an 18 french stoma (think diameter of the hole to her tummy). The biggest MINIs are only 14 french, but stomas will close as much as they aren’t blocked, so it should tighten up around it in short order. At five days, we have just a bit of leakage.

This doctor was confused why Katie had such a large stoma. Um, because that’s how the first surgeon did it? I just love it when doctors say things that make me wonder if our previous doctor screwed up.

The only reason this surgeon could give for putting us through a surgical eval to get this was that there was a slight chance the button wouldn’t go where it’s supposed to. If the stalk wasn’t long enough, it could end up outside the stomach wall. In that case, we would need a surgeon, and quickly.

Doctor then asked me who normally changes Katie’s button. There’s me with my hand in the air again. Okay, no problem.

She quickly removed Kate’s MIC, and inserted the new button. She announced everything to her doctor duckling (student). And in about five seconds, Katie had her first MINI.

The MINIOne sticks out about half as far as the TLSO.
The MINIOne sticks out about half as far as the TLSO.

The new button works just the same as the old one. There’s nothing to heal. It even works with the same tubing. If we want to switch back, it’s as easy as replacing a button – which I’ve been doing every three months for about eight years now.

Wow, that really was easy.

easy button

And I STILL don’t know what I don’t know…

A recurring frustration for me has come from not knowing what questions to ask. I have lost count of the number of times I have been stumbling along with some problem or difficulty, only to inadvertently blunder into a solution that everyone else seemed to already know about.

When Katie outgrew her first wheelchair, we were having big struggles with her high muscle tone, and getting her seated. Her body wanted to be straight, not bent. We were looking at designs from our local children’s hospital, and they were basically all the same. Sit here. Strap. SHOVE! Latch. Strapstrapstrap. Strap. Latch. Velcro. Etc.

At the eleventh hour of ordering a new chair, I asked in frustration, ‘Isn’t there something that would let her extend when she needs to?’. They looked at me blankly for a moment. Then I heard, ‘Well, yeah. There’s this chair, here…’

I think I may still have bald patches from tearing my hair out. These people have been seeing us for YEARS! They KNOW we have major difficulties with seating and fluctuating tone! So why on earth didn’t they volunteer this information??

And the bigger, and continually haunting question: What else don’t I know to ask?

One of Katie’s therapists was a mom to a child with special needs. One day, she mentioned offhand that she was thinking about keeping her daughter home from school this year. She felt like they were just warehousing her, and she might be happier just staying home with the nurse.

The, um… what?

Therapist: You do have a nurse for Katie, don’t you?

Me, scraping my jaw off the floor: Well… no. I didn’t know that was an option.

I stayed home with Katie for the first four years of her life, and after that I was only able to go back to work because it was part time and very flexible.

Nurse? I could have had a private nurse for my daughter for three years. Instead I struggled with overpriced daycare, underqualified help, and calling in favors from family and friends. Why? Because noone had volunteered that there was another option, and I didn’t know to ask the right question.

I hadn’t had on of these experiences in awhile, but yesterday, I called in an order for Katie’s g-tube supplies. Her script was expired, and the home health place asked that I call her GE doc for a new one.

So, I called the gastro, and talked with his nurse. As she was figuring out what to order, she asked, ‘Does Katie have a MIC-Key or a MINI One?’.

A… what?

A MINI One. As in, a g-tube button, only newer and in some ways better.

Um, ‘kay. It would have been nice to know THAT existed.

So I told her Katie uses a MIC-key, hung up, and went on to the next thing on my list.

And then, of course, my wheels started turning.

I looked up the MINI One, which does the same thing, only it has a lower profile, is more adaptable (more variable balloon volume, to customize it to the wearer), leaks less, and has a a more natural curve on the body side, to be more comfortable.

MIni_MicKey

Katie wears a body brace. The brace has a hole cut out at her tummy so that we can access her g-tube. The button sometimes gets caught on the edges of the brace. She’s been wearing this brace for years. Why didn’t any of her staff of medical people ever bother to mention that there was a lower profile option?

Oh, yeah. Because I didn’t ask.

So, I called the nurse back. It turns out that the gastroenterologist can’t prescribe a change in buttons (wha…?), a surgeon has to do that. Surgery isn’t necessary to change button styles. (Yes, I’m scratching my head at this, too.)

So, now we have an appointment with a new doctor, who is a surgeon, so that they can prescribe something which won’t involve (new) surgery. Meanwhile, we have a wonderful GE doc, but he’s never bothered to mention that there was another option. And even though he’s a pediatric GE, he can’t prescribe a different gastrostomy button.

Good grief.

Do I need to ask if there’s something else that would work better every time we do anything? Will the general question yield me anything? Or, do I just need to go line by line, thinking of each item I wish we had, each item I have at some point wished existed, and ask for it specifically and repeatedly?

Clearly, noone is going to offer the best solutions to me. I have to chase them.

Did you hear that sound? …on scoliosis

I really do have to stop tempting fate.

A few days ago, we did Botox. Even though I know that it isn’t a big deal, it stressed me out. Every time we do something new it stresses me out. But it went just fine, other than a lot of yelling and a bloody nose. And, being me, I said, I’ll look back on this, and it will seem like cake. Of course, that will be because we’ve move on to something scarier.

Welcome to something scarier.

It took exactly one day. That’s because we traveled from our town in South Dakota up to the Minneapolis area for Katie’s care. Because it’s a bit of a jaunt – anywhere from half a day to a whole day depending on how well she’s traveling – I stacked appointments and made a week of it. So, the day after the Botox shots, we met with our new orthopedic surgeon.

We’ve been talking with one ortho or another for about six years now. Katie has scoliosis, and we’ve been watching it, and wearing a TLSO. (BTW, when she had to be casted for a TLSO, she was two. When we received it, and the nurse roughly showed me how to strap her into it, it was the first time I really found myself saying, ‘I can’t do this!’ Do you hear me laughing at my own whiny self now? I am.) Every year, I have been looking at x-rays of Katie’s ever-increasing curve. And every year, I hear that we will eventually need to do something about this.

X-rays from previous years.
X-rays from previous years.

Something. That means something other than the brace, the therapy, the chiropractic, the hippotherapy, the craniosacral therapy, the hyperbaric therapy, the massage, the stretching that we have tried over the years. It means surgery. It means opening her up, and moving her spine back where it needs to be, and using a bunch of metal to make sure it stays there.

I have had years to get used to the idea that this is coming. But I’ve always managed to keep a spark of hope that we would avoid it. That she would stop growing before her curve got too big to manage. She’s only nine. She’s only four feet tall. As our nice new doctor said, ‘she hasn’t even hit her growth spurt yet’.

Last year, we talked with a different ortho, our local one. He isn’t a pediatric specialist, but he handles most of the peds cases in our area. He looked at Katie’s curve and said that we might want to consider doing something sooner than later, because he curve is smaller (T11-L4 ish) and sharper, and we may be able to get away with aggressively fusing just that length. But, he wanted to wait another year and see where we were at.

Last year.
Last year.

Where we’re at is here. An eighty degree curve. If you’re unfamiliar with this, I’ll tell you what an orthopedic surgeon/physiatrist that I work with told me: he would want to correct anything over sixty degrees, because after that it gets more complicated. After that, you start to risk encroaching on organs.

Well, okay. So, we’re sitting in our room and waiting to see our new doc, and the nurse comes in the does nurse stuff, and then she puts Katie’s new and improved x-rays up on the screen before she leaves.

This year.
This year.

I don’t need a doctor to tell me: this is not good.

So we meet the new doctor. He’s very nice. He has doctor ducklings following him: a resident and a student. We talk about Katie’s history and what’s been suggested and done to this date. He talks about misconceptions that many people have about the body jacket Katie has been wearing for years. (They don’t correct anything, and there is question as to whether they even slow the progression of scoliosis.) He tells me that he doesn’t usually suggest surgery the first time he meets a family, and that he doesn’t expect us to make a decision on the spot.

Me: Is there any advantage in waiting?

Doc: No. If anything, her curve will keep getting bigger. She is still pretty flexible right now. As she gets older, she is likely to get more and more locked into place. That will make the surgery more complicated.

Me: Would we need surgery if her curve stops progressing? (read: grabbing at straws)

Doc: (Gently) Well, if that were to happen, she could probably just be braced like she has been. But, there is NO WAY that will happen. (He didn’t shout, he just made it very, very clear.) This curve has momentum.

Me: What would the schedule look like for this?

Doc: The surgery would take about five or six hours. He would probably have another surgeon assist, and they could each start at one end, so it would take less time. She would need to be in the hospital for about a week. She would need follow up appointments at six weeks, four months and a year. She’d be out of school for three or four weeks. She couldn’t play contact sports for four months (not that she would).

I’m running low on questions. Oh, then there’s this one: So how many levels are you thinking we should do?

Doc: T2 to the pelvis.

I didn’t fall on the floor. But it was close.

…(find my composure. Use my mantra). Me: I had been told previously we might be able to get away with a smaller section. ?

Doc: Some docs try to do just the curving section. But what happens is that the stress of the curve is transferred to the neighboring sections, and after awhile, she would need a second, bigger surgery to fix that damage.

I know this is true. I read medical records and interpret people’s conditions for a living. I just don’t want to process that thought.

Me: I’ve heard about a selective dorsal rhizotomy. If she has to be opened like this, is it possible we could look at doing that at the same time, and she might gain some control over her legs?

Aside: the SDR is a surgery where a neurosurgeon uses an EMG to figure out which muscles are responding abnormally to nerve stimuli, and snips them. It is supposed to help the person have more and smoother control. I have a friend who had this done as a child, and feels it really improved her quality of life.

Doc: (Looks thoughtful. Ha! Nailed him with an unusual question! Score one for me.) Well, normally the rhizotomy is for people with more control to start with than Katie has. But, since she will be having surgery anyway, I don’t know. I can talk with a neurosurgeon here to see what they think of that idea. I’ll get back to you.

And then I’m out of questions. And my head is in a cloud – a dark one. I have spent years joking that I am keeping my head in the sand about scoliosis surgery – I prefer not to think about it, talk about, stress about it. I like to maintain some delusion that she will stop growing before this becomes critical.

Did you hear that sound? That was my head popping out of the sand.

Botox, Part II

So, yesterday Katie had her first Botox shots. We drove up to Minneapolis a day ahead of time. It’s about a four hour drive under normal circumstances, about seven or eight with my girl, because she needs more breaks/stretching/time to sit and eat lunch/etc.

The day went pretty well. She thoughtfully slept in, which is good, because she wasn’t going to get to have breakfast beforehand. We stayed at a very nice hotel, which gives a good discount to the patients at Gillette Children’s Hospital.

On the way out to the van, a man asked, “Going to Gillette?”. Yep.

“We’re here for that, too.” Cool. I love the comradery most of us parents seem to naturally fall into.

“We’re getting Botox today. First time.”

He smiled.
“That’s pretty easy.”

Then he held the door for us because, even though there is a ramp at the entrance, it’s about a four foot square of concrete which steps off in two directions, and the ramp shoots out parallel to the building. So, it doesn’t leave a lot of room to hold the door, keep your feet, and pull a chair through.

(Note to self; look up a good link for ramp guidelines.)

We made it through a small stretch of city to the hospital. Siri is my copilot – I used to get very stressed about finding my way in the urban jungle. Why is it that children’s hospitals are always downtown? Anyway, we got checked in, and signed the many forms, and got to our room.

Roughly seventeen people came through. The procedure was explained four times. We confirmed her name and birthday five times. Then the show was on. Because we were just doing Botox, the only medicine Katie got beforehand was nitrous oxide. Most people would find this no big deal, but honestly, I would rather she had just gotten a shot – having a mask held over her face was NOT FUN.

So, the Child Life specialist tried to distract and entertain her (that didn’t work). I tried to soothe her (that didn’t work). One nurse (?) held the mask over her face (with both hands, and a pretty impressive struggle, right up to the end of it all). Some random guy stood in the background and watched. Two nurses held her legs, and our doctor did the shots in her hamstrings. (That part went okay.)

And tada! We were done. An hour and a half, start to finish. Not too bad.

There weren’t any obvious side effects. The only thing that came up was Katie had a nosebleed that afternoon. I’m guessing it was from the battle over the face mask.

If we get good results (we should know in the next week or less), I think we’d be up for a second round. But next time, I’m going to insist that we skip the nitrous, and go for a light knockout.

Don’t sweat the small stuff

Okay. No food after midnight. Check. No milk after 2 am. No problem. No water for three hours prior to the procedure, and morning meds are okay, as long as there’s no more than an ounce of water with them.

Check and check. And to make life a little easier, Katie is actually sleeping in this morning (after being up at 2 am for no reason that I could find). So, overall, this is starting out smoothly.

So why am I stressed?

This is not a big deal. I know I’ll look back and say, ‘That was cake.’. Of course, when I do, it will most likely be because we have moved on to dealing with something harder.

When Katie was born, we didn’t know she would have a disability. But she did have some jaundice. She had to spend an extra day in the hospital under the lights, and then she was on something called a bili blanket – think ‘baby wrapped in cumbersome neon blankie’, and you’ll have a good visual.

At the time, I was really stressed out by that. It was hard to hold my baby. I was a new mom, trying to get the hang of breastfeeding, get the hang of not sleeping any more, heal, and on and on.

Yes, yes. The horror.

But at the time, it was horror for me. It was stressful. I wanted to get rid of the stupid apparatus and move on with our beautiful new life. I had no idea that our beautiful new life would include days, months, years of things that would make that blanket look like the briefest of afterthoughts.

So, this morning I’m taking Katie in for her first set of Botox shots. It’s stressful, because we’ve never done this before. I don’t really know what to expect. It’s a PROCEDURE. It involves drugs. It involves a toxin, for goodness sake.

I know that there will be a day very soon where I will ask myself, ‘Why was I stressed about that? That was cake!’.

But I also know that part of that realization will come when we face a bigger challenge. So, for now I will be happy to indulge myself by stressing over the little things.