Monday, January 14, 2019

Lucky Ducks and Another X-Ray

The stressful gastro saga continues (accompanied with random pictures from our weekend to lighten up the ugh factor).

In the last post I explained that on Wednesday morning I called the GI office and told them that the after six days of colonoscopy clean out protocol for a certain little kid in the house, things weren't going well.

They sent us for an x-ray, gave the kid a two day break, and told us to start up the clean out again on Friday.

So all weekend that's what we did, focused on Monday, when it would be done, the ninth day of this horrible process, and we'd go in for another x-ray that would hopefully say that things were "good enough."

The progress that occurred this week gave no indication that we'd reached a point that they would consider "good enough"... but doing the same thing over and over again was beginning to feel like insanity.

And I have a kid who has had to miss the first week back to school (because you can't really go to school during this whole process) and who desperately doesn't want to miss the second week.

At six a.m. this morning this particular kid kept begging me to ask their teacher if it was okay if they went and I kept explaining that we just had to get their tummy a little bit better for that to happen, while wishing desperately that I could make it happen so that they could go and run around on the playground and play with their friends.

This morning I called gastro first thing to tell them we'd completed the additional three days of the process and to see about the x-ray.

The urgent nurse line went to voice mail (the non-urgent line has a two day turn around and that's why this is "urgent").

I left a message and checked everything off my to do list that I could do. I had a window of time, midday when we could do the x-ray with just me and this particular kid, without hauling siblings along with us, or having to go late at night.

"Please, please, please, have sent it." I whispered as I drove a couple of hours after I left the first message.

But it wasn't sent and no one was calling me back.

So I called his pediatrician and spoke with the nurse there. I explained that last week his doctor had told me to use the x-ray that we already had and had promised me that if we needed another x-ray he would order one ASAP (gastro later also told me to use that x-ray when they called, so they knew that it had been used).

Well, now we were supposed to get that other x-ray, and I couldn't get ahold of gastro, so could he maybe send that order in like he'd offered to, so that I didn't have to bring all five kids along to the hospital after school?

I knew that the nurse, who'd been there during appointments when I'd had to do exactly that, could picture what that would be like.

Unfortunately his doctor wasn't in the office today, and it might take a while to get an answer back about whether they could order the x-ray for us.

I picked the kid up and we went to Dollar Tree so this particular child could pick out six small presents for doing so wonderfully through all of this.

"Six is so many!" were the words I heard from the back seat.

I called radiology. Any chance the order was already in? No, they didn't have anything new. I hung up the phone.

The phone rang again there, in the parking lot at Dollar Tree. It was the nurse from gastroenterology returning my call.

It doesn't sound like things are where we want them and we have no record of wanting another x-ray. Please continue with the cleanse.

I took a deep breath and asked her to double check with the provider. I was certain, totally certain today was supposed to be an x-ray. And this is painful. Really painful. The first five days were okay, but now it's hurting. I don't want to keep pushing this thing if we don't have to. We need to check and see if this is enough.

I hung up the phone and stared at the screen and screamed internally.

I know it's nobody's fault. It's just hard to get little things done and it's already a hard, exhausting process and it's already dragged on far too long (the cleanse). And it's hard not to get discouraged by the fact that it doesn't seem to be working.

We lingered as long as we could in the area around the hospital before driving home so that we could get the other kids after school.

We'd made it the thirty miles and had been in the house for ten minutes when the phone rang. It was gastro again.

They had wanted an x-ray.

The order was in. We could go to the hospital at any time now.

"Thank you." I said, feeling completely drained. And now to decide between having all the kids come along, or going super late.

Fun times.


Meanwhile we did have some really fun times yesterday.

I found a Lucky Duck Game on clearance for $10 at Walmart and the kids thought it was basically the best find ever.

Maggie played it with the boys, which I think is pretty much the first successful game I've seen her play with them, and it was pretty wonderful.

I still had to help her, but not really any more than I had to help the boys remember whose turn it was and not to forget that they couldn't just randomly start grabbing ducks in excitement.

All in all a pretty successful game time.

Saturday, January 12, 2019

Stress, Surgery, and Haircuts

The new year came out in a rush of things that I knew that we had to do, but that didn't make the last couple of weeks any less hectic.

And stressful. There was definitely heaps of stress mostly caused by one particular doctor's appointment for one of our younger kids.

I'm not saying which kid it is, because gastro issues aren't fun, but I will tell you what happened since we have quite a few kids and quite a few of the kids are still little.

I took one of our littles to an appointment at the Children's Hospital for an issue we've been dealing with since summer. This particular little kid has already had to go through three colonoscopy prep clean outs and I thought they were doing better. Definitely better than when we first got a referral to gastro.

The doctor thought otherwise.

The little progress that had been made over the last six months since the process had started, and three months since we'd last seen them, wasn't enough. Even with two daily meds that we faithfully give this child every, single, day.

We'd even gone along with the GI suggestions that are common with these types of issues to take this particular child to a therapist, to make sure the issue wasn't psychological, and had returned after a couple months of visits with a message from the therapist that they needed to figure out what was going on because he believed that it was 100% physical.

They ordered a three day colonoscopy prep clean out for the kid and I gasped.

To be clear, they'd just said to prepare a colonoscopy clean out every day for three afternoons and give it to this particular child. If it didn't work (as in have colonoscopy worthy results) by the third day, we were to call them, and prepare for a forth day.

We could stop at any time if the results looked good.

But she said to expect more than one day.

At the time, I thought three sounded so long.

A week and a half later I'm glad I didn't know what was ahead of us.

Three days passed. Little progress was made. I talked to the doctor on call because it was the weekend. He said to repeat the clean out for two more days and to call after the fifth day.

I sighed and we did it. Five days sounded impossible, but we were already three days in.

Days four and five weren't too bad. The kid was a good sport about it, faithfully drinking their sippy cups and on those days they didn't seem to mind it as much. But the drinks weren't successful in doing much either.

On day five I called back and gave them the news that we still weren't seeing anything like the results they wanted.

I carefully went over exactly what I'd done, and how exactly I'd followed their instructions for the third time, and then the fourth time, until they were satisfied that I really hadn't messed it up somehow and that it really wasn't working.

We needed to do a sixth day they said.

And the sixth day was when things got bad and the kid got sick and after that we were at the hospital for x-rays confirming there wasn't a blockage, it just hadn't worked. And my kid was hanging out with the x-ray guys who were giving them an action figure that they had found in the sticker box and stickers and what this particular kid really wanted, a rubber band that had fallen off of one of the rounds of stickers.

The next day I got the call that we needed to do three more days of clean out.

I may have begged and pleaded and said I don't even know how it's possible when this kid feels this sick at this point when drinking this stuff.

Isn't there any easier way? And I meant any easier non-surgical way.  There was not.

And they said, you have to, you absolutely have to, we need to complete the clean out.

Midway through last nights colonoscopy prep drink party, when this particular kid hit the wall and "couldn't" drink anymore I excused them from helping pickup toys (let's face it they weren't doing all that much anyway, mostly following the bigger kids around while they were doing their chores) if they finished their drink.

I hadn't really meant for this particular kid to be cleaning up when I said "okay guys, time to pickup" anyways. The kid in question flopped down on the couch and drank and drank and that pushed them through day seven.

We have two days left in this newest prescribed span of time. And then back to the hospital for another x-ray. I am so ready to be done and I know this particular little is more than ready for it to be done.

I'm so afraid that it isn't going to work (since it hasn't worked much so far) and that they're going to say we need to keep pushing through more days.

Meanwhile, in the midst of all this, Sadie had two big days.

Around the new year she started begging me to chop off her hair.

Are you sure? I said, mostly because in the past she's asked me to cut her hair and then changed her mind when it was done. This time I wanted to make sure that she was sure.

She assured me that she was absolutely certain and after giving her a chance to change her mind for a week, and being certain that she wasn't going to, I did what she asked.

She told me that I could record it and I'm so glad that she did because she was hilarious.

She kept telling me that she was "lightheaded" because she thought that lightheaded meant her head felt light from not having as much hair.

She's such an awesome kid.

And I'm really glad that she likes how it turned out.

The next day it was time for her surgery.

We got out of the car at her surgery, which I wasn't planning on vlogging in any way shape or form and she asked where my camera was and why I wasn't recording.

I told her I hadn't planned on recording anything, and she said that she wanted a vlog about her day and her surgery. I pointed out that I'd left my camera at home and she pointed to my phone and said "what about that."

So I laughed and filmed bits of her day, and she got her video.

And she lost her adenoids in a very successful, easy surgery where she had hardly any pain afterwards.

She was the most excited when the anesthesiologist told her that they would put in the IV after she was asleep with gas, because the IV was what she was the most nervous about beforehand.

And we're all pretty excited that she can now, for the first time in her life, actually breath through her nose.

In the midst of all this, my car ended up spending a few mornings at a tractor mechanic down the street from our house, where they drilled into the frame so that we could connect a new harness for Maggie, to the frame of our car.

She is little, but she's so muscular that she's outgrown the weight limits on most five point harness car seats. It took a bit for us to figure out what came next, but we finally got the special harness, and another special strap, and a special seatbelt lock and altogether it seems to be working.

The only problem was that the special harness had to be drilled into the car frame. But the guys at the mechanic place down the street can fix just about anything and they were able to move the brake lines and drill the harness hardware into the car and now she is set.

For now at least.

And she seems pretty excited about her "big girl" harness with a booster.

And during all of this while I was picking up a few little prize/treats at Dollar Tree I realized that they were putting out their Valentine's Day items already.

Now I don't know if this is the same everywhere, but where we are the seasonal items at Dollar Tree sell out fast. The cashier told me it's not unusual for them to sell out in a single day at the store I usually shop at near Maggie's therapy center.

Which is why, when I saw a mermaid box of chocolates I knew that I needed to stop then and there and change my plans from a quick trip to a quick trip getting the kids their little Valentine's Day gifts if I wanted to get them at Dollar Tree.

And I made a little video about it because Dollar Tree has some surprisingly neat stuff. Ours even had mermaid fabric pillows shaped like hearts (so I guess you know what Tessie's getting with her chocolates)!

And that is what has been going on with us and keeping me so busy that I haven't even been able to sit down and get out a blog post in the last two weeks.

I'm hoping the next couple of weeks will be a little less eventful.