Ellie's Medical Update

I'm going to preface this post with the fact that most of it is boring medical mumbo-jumbo and it also contains graphic details about pee and poop. Read on at your own risk.

You might remember from previous posts that Elise has a condition called vesico-ureteral reflux. This is where urine passes from the bladder back into Elise's ureters instead of all out through her urethra. If Elise gets a urinary tract infection it predisposes her to kidney infections and kidney damage. Thankfully her case is mild, but we've really struggled this summer and fall with recurrent infections and some incontinence issues. We were finally able to get back in to see her Urologist yesterday to get a better understanding about what was happening and get a plan in place for how to deal with this.

First, I want to say that we've been dealing with this through Elise's regular pediatrician all summer. Three months ago I decided that we needed to get back to her specialist. I was told that I needed to repeat some tests prior to getting back into him. We tried to do that, but Elise couldn't tolerate the testing. After that, I tried for literally 1 month to get the appointment with the Urologist made. I talked to his scheduling office and at least 2 of his nurses detailing what the problems were. I was told that they couldn't do anything for me until urine cultures were faxed, or until a certain nurse was back in the office, etc. etc. Finally a got the appointment made, but had to wait another month to be seen. Well, the first thing the doctor does when he gets in the room is chastise me about not calling sooner and how they would have been doing all kinds of things if they had known what was going on. Seriously? I was fuming. But, I wanted to use my time with him to get answers not argue about his office staff so I stuffed my feelings down. Plus, he's a good pediatric urologist. I'd rather have someone who knows what he's doing, but has a bad bedside manner (he is good with Ellie). And, I did get my answers.

What we learned:
1. Infection thickens the lining of the bladder and predisposes to more infection. He suggested we go back on prophylactic antibiotics for a few months to try and break the cycle of infection. I've given in and said okay to nitrofurantoin. If she needs to be on it more than a few months I might request a change though. If Ellie gets pulmonary fibrosis as a side effect I will feel forever guilty. Only my pulmonologist friends will likely appreciate my issue with this medicine.
2. She is definitely having bladder instability and spasm. This may not be what caused the vesico-ureteral reflux, but is certainly propagating it. He stated that kids with bladder instability take an average of 2-3 years longer to resolve their reflux than kids who don't. So, we're also starting an anti-spasmodic agent.
3. Her bladder instability, spasms, and infections are all worsened by chronic constipation. We are going on a bowel regimen of fiber supplements. Her poop is supposed to be of a "toothpaste" consistency. There is actually a print out sheet that we were given with a scale of different levels of poop softness. It has pictures. It's hideous. "Toothpaste consistency" was more than I needed to know.
4. We go back in 6 months to reevaluate. At some point she will need to have the VCUG procedure that freaked her out and she wasn't able to complete the last time, but we can wait 6 months to a year depending on how she's doing and hopefully she'll be old enough to reason with better at that point. The reasoning behind this is because they do like to make sure that reflux resolves in girls prior to pregnancy otherwise it can cause problems.

Update on Speech and Insurance - AKA the nitty gritty of parenting a cleft affected child

So far, Max's cleft hasn't been a big deal. The surgery and recovery weren't nearly as bad as I had anticipated. Day to day, speech is really our biggest issue and Max seems to be making really good progress with that. I really like our speech therapist. As you recall, his therapy is provided through infant toddler services of Johnson County until he is three. We were lucky enough that we got one of their therapists who is very knowledgeable about cleft and speech issues. Prior to his palate closure Max could make m and vowel sounds well and could do an occasional h, w, or n sound. Now he can do h and w well, n when he chooses, b and p well, d pretty well, t and f occasionally. This is with about 4 speech visits since surgery. Also, his language is exploding. He's always tried to say a lot and mimicked well, but it's unbelievable the things he's trying to say now. Off topic, but another thing that I've noticed lately is that his play skills have skyrocketed. When he first came home he really didn't know how to play with toys or with other kids. Now, every day he's playing more. He and Ellie love hide and seek, he loves to push around toy cars, trucks, and trains, he enjoys puzzles, and he's even doing some pretend play. Yesterday he was crawling around the house meowing and pretending to be a cat. Too cute! He also LOVES Spiderman. What is it with boys and Spiderman. We almost had a major meltdown the other night when his Spiderman pajamas were dirty. Thankfully mommy found a Spiderman t-shirt that worked.

On the insurance front we got the insurance company to agree to rereview the claim. We have the operative report describing why the vestibuloplasty was necessary from a cleft repair standpoint and we also have our insurance contract that specifically states that the dental exclusions do not apply to cleft repair issues. Hopefully that will be enough. If not, we'll be getting a letter from our surgeon and we will file an official appeal as well as sending letters to the state insurance commission and our state senators and representatives.

Elise's advent calendar

Our kids are very into opening the advent calendar every day. They do not appreciate having to take turns though. So Ellie decided to create her own advent calendar for her personal use. I was very impressed. She made it in the shape of a clock and is marking off one number on the clock for each day that passes. She a little short on days since the clock only has 12 numbers, but I still thought it was a great idea. Also, notice in the picture of her in front of the door how she's taped a crown up high on the door so Max can't reach it and only she can mark off the days. Her mind is always working. It makes me a bit nervous.

Snow Day

It was bitter cold here today. It snowed some last night, but really was just cold and icy. Just bad enough that they didn't cancel Ellie's school, but made it a late start (10am instead of 8:30). Who thought this was a good idea. Try to get a 4 year old to want to go to school after playing in the snow. Max only lasted about 5 minutes. It was just too cold. But Ellie persevered. We had to coerce her in with hot chocolate.

Just a couple of cute pics

Santa Baby

This weekend we went to the Santa brunch at our country club. It is an over the top celebration for the kids that we all look forward to. I must say, I think they have the best Santa and Mrs. Clause I've ever seen.

Seriously, look at this Santa. Ellie had a bit of trepidation, but warmed up after she got her blinking reindeer nose.

Max had no problems. He jumped right up on Mrs. Clause's lap and waved over at Santa.

This is Ellie with her reindeer nose making reindeer face and getting ready to make a grab for some candy.

Ellie with her BFF.

Our BFFs. Aren't they a cute family!

This is my favorite. If I get around to it you may see it as a Christmas card as well. But, since I still haven't sent Max's announcement don't count on it.

Max LOVED his woo woo train outfit. He keeps sneaking into his room trying to put in on.

These two love each other!

Fall Pictures

My cute nephew
My adorable niece

Ellie of course

Maxybaby loves the leaves

How often do I get a picture with all of their faces visible?

Yes, I'm behind. These are some cute photos of some cute cousins playing in the leaves this fall. Once I figure out some basic photo editing I'll edit that marker right off of Ellie's face and they'll be even cuter.

GRRRRR!!!!!!!!!!! I HATE INSURANCE COMPANIES

First of all, I know I'm a bad blogger. I was on call for a good part of the week before and after Thanksgiving and I got overwhelmed. After a nice 4 day weekend I am somewhat caught up with bills and cleaning and I got in some great time with my kiddos and my hubby. I also got some great pictures of the kids that I promise I'll post soon. Now, on to the real post.

I was so proud of myself. We got Max's cleft repair surgery pre-approved by our insurance. The bills were coming in and I was staying on top of things. I caught the $800 overcharge for ear drops and got that fixed. I thought I had it all under control. I should have known better. I deal with insurance companies as a patient and a physician and it's never pretty. I am quite positive that the majority of them are trying to trick and cheat people into paying more than they should. So, I wasn't entirely surprised when I got Max's surgery bill and our insurance had declined paying for $3500 of the procedure saying that it was dental. His surgery bill was broken up into three parts. The first two parts they covered fine. The third part was something called a vestibuloplasty. My non-surgeon understanding of this is that they make some incisions near the gum line (recall my freak out of this being a fistula) and pull the tissue mid line to close the cleft. Feel free to correct me if someone has a better understanding of this. So, my insurance declined to pay this part of the procedure stating that it was dental. Even though in my mind (and my surgeon's) they couldn't close the cleft without doing this. So, I thought when I called and explained this surely the insurance company would understand their faulty thinking and pay for the procedure. Wrong. They are still saying it's dental and refusing to pay. They also said that although the surgeon pre-authorized the procedure, he didn't pre-authorize the vestibuloplasty code (who would have known that it wasn't bundled into the cleft repair). I don't think I'm an idiot, but I really don't know how to convince an insurance company that they're wrong when they are unwilling to hear it.

Here's my plan. I've called the physician's office and the physician's billing office to have them talk directly to the insurance company and try to explain (probably they won't listen to them either). I've called my insurance agent to ask him to talk directly with the insurance company (probably won't listen to him either). If this doesn't work I'll file an appeal with letters of medical necessity from the surgeon (since it's an internal appeal I doubt this will work either). I also plan on sending a letter to the insurance commissioner for the state. If anyone has ever dealt with this before or has any other ideas please let me know.