Wednesday, April 27, 2011

Appointment Round-Up!

We had a triple header yesterday! It has been a while since we've had multiple appointments on one day, but that's just how it worked this time. KayTar needed to see the ENT and have audiology testing done before her ARD meeting next week, but we got a surprise confirmation call about a GI appointment on the same worked time-wise so we kept them all. It was a surprise because those pesky burglars stole my iPod which had KayTar's appointment schedule for the next YEAR on it, so I'm sure we'll be getting several more of those surprise appointment confirmations as the year goes on. I use Google calendar now, synced with my iPad and iPhone, in case the devices are stolen again, I won't lose all that information.

KayTar is still having fecal incontinence, which is a nice way of saying she almost always has stool leakage prior to going to the bathroom, which is our sign to put her on the toilet and ask her to go. We put her on the toilet at the same time every day to try to avoid that leakage, but there is a limit to how well you can control someone else's bowels...know what I mean? We give Miralax, we put her on the toilet at the same time to avoid accidents, but it isn't 100% effective, because her colon isn't 100% predictable. She is in undies, but we have to use pantyliners so we aren't changing/washing 3,000 pairs of underwear per day. Anyway, the GI thinks it is time to do manometry testing (link is not to our hospital, but the information is good) this summer, to find out if this is behavioral or if she truly doesn't have nerve signaling from that particular area. KayTar overheard me explaining the procedure to Josh on the phone and said, "What?! They want to put a balloon in my butt?! Am I going to float up to the ceiling?!" We're trying to decide if she is mature enough to handle it this summer or if we should wait until next year. I asked the GI if this continued fecal incontinence is common in kids like KayTar and she said, "Well, there aren't really any kids like KayTar to go by!" Isn't that the truth! KayTar was ON for that appointment. She really likes to perform for our GI doctor and we're lucky to get the chance to discuss any sort of business, honestly. Somehow, we found time to talk about the #2 situation in-depth and then touch base on her frequent vomiting, bizarre diet, elevated LFTs and reflux. We're not changing anything at this point, just updating information. She said the elevated LFTs might be from something mild, like a virus, or part of her overall presentation, but we don't want to do a liver biopsy just yet. We're seeing a new doctor in June who will likely re-order all sorts of labs, so if they are still elevated then, we might need to deal with it. I really like her GI doctor because she is always interested in KayTar as a WHOLE person, not just the GI-tract, so we also go over any changes to the whole picture since her last appointment. She is one of the few doctors who does this and I appreciate it.

After GI, we tried to meet up with Heather and her kids who are in town for medical testing/appointments, but it was lunchtime rush hour in the hospital so by the time we got food (There were like 6-7 doctors in front of us at Subway and KayTar said, "What is this, the doctor store?" LOL.), found an elevator with room for me and KayTar's stroller, and made it to the parking garage, we didn't have enough time left before they had to be off to their next appointment. KayTar and I had a quick lunch and went to the bookstore to kill some time before the next appointment. KayTar read part of a Flat Stanley book, Knuffle Bunny Free, Quackenstein, and The Stinky Cheese Man while I listened/borrowed Borders' Wi-Fi to check my email. We grabbed a coffee (for me) and a milk (for her) and headed off to the next stop.

KayTar HATES the sound booth testing. The white noise is too loud, the whistling is too whistley, the booth is too cramped. She did fine, though. Left ear is non-functional, right ear still looks perfect. Hooray!

Is it just me or are ENT appointments totally useless? He basically looked at her and said, "Yup, those are ears, and that is a nose, and that is a throat." Oh well, we had to do it so we can get her otological eval for her ARD.

In the waiting room, KayTar made friends (doesn't she always?) with a mom and baby. The mom was very nice and chatted with KayTar with great interest and once KayTar hooks someone like that, I can't reel her back I just went and sat on the floor near them. The baby was ADORABLE. Oh my gosh. He seemed to really like KayTar, too, which she loved. She's after me to give her a little sibling, but that's not happening! At one point, KayTar said, "Look (baby's name), you have ten fingers! One, two, three, four, five, six, seven, eight, nine, ten!" But the mom said, "Oh, look! How many fingers does he have?" Turns out he had polydatctyly and actually had TWELVE adorable, pudgy baby fingers. KayTar thought this was awesome and said, "Ohhhh, he's a SPECIAL baby...I just have ten." Sometimes I have to worry about saying inappropriate things, like "Why is that lady so wrinkly, did she stay in the bath too long?" or "That man is so FAT!" but I really never have to worry about how she'll react to differences like these...she's sees the best in all of it. Twelve fingers just means Kindergarten math will be easier for him. ;) Later she kept asking me, "Are you SURE I didn't used to have twelve fingers?"

After all our appointments were done, we headed over to the Ronald McDonald House (which KayTar thinks is AWESOME and is a little bummed we live too close to stay there when we need to see the doctors) to see Heather and her family.We had a great time and KayTar is just OVER THE MOON about her new teenage friends (seriously, the whole ride home was "My teenage friends..." this and "My teenage friends..." that.) and was tickled beyond measure that they all have g-buttons like her. We actually met Heather through our pediatrician, who evidently networks in the ladies' room for us, LOL! Dr. H was at the RM House with her mom a month or two ago and met Heather...her kids reminded our doctor of KayTar, so she got her contact information and her doctor's info, and I'm sure glad she did. For me, it is an exceedingly rare thing to talk to another parent who understands even half of what I'm talking about in reference to KayTar, so meeting someone who understands all of it, is miraculous. Her kids have mito and we'll be seeing their mito specialist in June. I'm really looking forward to having a fresh pair of eyes look over KayTar's case! Anyway, Heather and her family are so sweet and I'm very glad we had the chance to spend some time is KayTar, who was doodling Abby's name this morning before school. Haha! She's already making plans for when they come back in June.


Magpie said...

Twelve fingers would be good when it's time to learn base 12.

InTheFastLane said...

It is good when you can get those all taken care of on the same day, but what a day!

~aj~ said...

Oooooh, I'm so glad you were able to find some time to squeeze in a visit with Heather and her children. What a blessing your pedi and the ladies' bathroom turned out to be!

Such a sweet story with the baby in the waiting room. I sometimes wonder what KayTar is going to do as an adult...obviously her public relation skills are excellent. The sky's the limit for that girl!

Gizabeth Shyder said...

Reading this exhausted me - I can't imagine what it was like for you guys!

leah said...

Long appointment days are exhausting! Our ENT appointments are always the most complicated (lots of airway involved reflux issues for us). We're sort of lucky that most of our appointments get spread out, though!

I hope the manometry testing goes well - the process certainly doesn't sound like fun!

jill said...

Kyla, is there any chance her colon and stomach problems are from something ordinary, like a milk sensitivity? I just wonder if you took her off dairy what would happen. And from there I would try wheat, eggs, etc. I'm not sure what she gets in her g-tube so that may not be possible, but some of her stuff looks familiar here.

Kyla said...

Leah: That is interesting. Our ENT has never discussed her reflux with us...we just handle that through GI and PCP.

Jill: Everyone is pretty sure it is all tied to her underlying neurological issues/metabolic disorder...some dysmotility and nerve issues. She gets Pediasure through her g-tube which only has a negligible amount of lactose...but it isn't dairy free. It has been such a miracle as far as getting rid of her episodes, I don't know that we'd be willing to try something else unles things got worse in the GI department. Her stools are not loose (though we keep them soft with Miralax) but she always has some "leakage" before knowing she needs to go to the bathroom and we are the ones who kind of watch her for signals and send her to the toilet.