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.

Progress/No progress

Some days things really seem to be going well with Max.

He is not waking up at night anymore and is consistently sleeping until 6:30-7am. It was 5:30 for a while which is just too early.
He may still wake up crying for mama, but he lets the nanny comfort him and it doesn't last for an hour. A plate of pancakes and sausage helps as well.
He lets the nanny put him on the toilet. He may scream or say no, but at least he can be coerced with candy corn instead of screaming in misery because he has to potty, but doesn't want her to help him go.
When we're the ones home we're seeing fewer tantrums.

We have had some new issues develop though. Well really just one. When he gets upset he's started getting shoes and clothes out of his closet and drawers and uses these items to comfort him. I would have expected this for an institutionalized child, but Max seemed to have plenty of clothes/shoes at his foster home so I'm not sure where this came from. I do remember that when we first got him he had to have shoes on him/in his hands at all times. I thought then that he wanted to go to try and find his foster mom. His attachment to his shoes persisted, but this seems different. He's also taken to burying his face in his bed or up against a wall and not looking at us when he's upset. It makes me so sad. I feel like we're not doing something wrong and now he's looking to other means of comfort besides us. At least he'll let us redirect him from these activities to us and then lets us comfort him, but it's a bit disheartening. I still think all of this stems from me going back to work so soon after cleft surgery. Unfortunately that wasn't optional.

Ellie has had some rough spots this week as well. I think she's just really tired, but she's not wanted to go to school the last couple of days which is very unusual for her. I've emailed her teacher to make sure that there's not an issue there, but I suspect it's fatigues since she's been fairly grumpy at home too.

The good news there is even when she's grumpy, and even when she tantrums, it's not the frequency or the extent that it was 3-4 months ago. And, if we can recognize and intervene earlier in the pattern (which we're getting better at) she's even been able to calm herself down several times. This is big progress and I'm trying to focus on that instead of the problems.

We're also doing better with the bathroom with her. We are trying to keep her on an every 2 hour bathroom schedule. When we can do this she's not having accidents. If we exceed that time we've had a couple of small issues, but no big accidents. She's also been dry at night about 1/2 of the nights this week which was previously unheard of. Most importantly no infections this month!

Okay, that's the gory details of this week. I still need to post pictures. Not of tantrums or potties though.

Palate Update

We had our second follow up with the plastic surgeon today. We just love him.

Max is doing very well. He seems completely recovered. No pain for sure. We are still having occasional nighttime awakenings, but I'm not sure if these are surgery related or more due to the fact that I'm back at work. He's been on a soft diet for the past two weeks, but he hasn't seemed to mind this at all.

The area of his palate that I was initially concerned about (by the gum line on the side where the created the flap to pull mid line) has healed up very nicely. There was an area in the mid line towards the back of the palate that was concerning me as well. The doctor saw it and said that he still can't tell if it's a full fistula or a superficial opening only. He says that he thinks that it will close in the next couple of weeks, but if it hasn't we need to see him to talk about repairing it. If it has, then we're good until our next cleft team appointment in August! Our next surgery would then be between age 4 and 6 for a lip/nose revision and possibly palate lengthening if needed. That would be ideal, but as worried as I was about a fistula early on, I have a peace about it now. It wouldn't be the most fun to have to do another surgery this year, but I realized after this one that it's not a huge deal either. Max really did well with this surgery. Even if he needs a fistula repair this is pretty small and I expect that he'll do fine with that as well. The surgeon also cleared Max for a full diet, so we came home and had some cheddar bunnies to celebrate.

Other good news. My camera lens came yesterday and works perfectly. Hopefully I'll get some cute pictures this weekend to post.

Finally Halloween Pictures

This is his pouty face. He did not like the hood over his head.

Taken the night before. Before the camera lens broke. Uploaded on my crummy computer since the laptop is broken - thus the wait for the photos.

Feeling Grumpy

1. I was on call this weekend. Never fun. I'm tired.

2. Max has been waking up at night again. All he wants is me. Don't get me wrong, I'm glad that when he calls out for "momma" he wants me, but I'm tired.

3. Halloween is a busy weekend. Squeezing all of the Halloween fun in while taking care of 40 inpatients is hard. I'm tired.

4. Jason had the kids all weekend. He's tired and grumpy. He's not a very good housekeeper. I got to clean up when I got home, give the kids baths, and do a big chunk of the bedtime routine. I'm tired.

5. Our camera lens broke this weekend and I get to deal with the waranty and getting it fixed. I was able to get a couple of pics of the kids in their costumes prior to it's breaking, but missed lots of cute photo ops.

6. Our laptop broke this weekend and I get to deal with the waranty and getting it fixed.

7. I think Ellie might have another UTI. I still haven't heard back from the urologist about her appointment.

8. I think Max might have a different hole in the back of his palate. Yes, you can tell me not to worry all you want, but you all know I'm worrying. Our follow-up is not until Friday the 13th. Let's hope that's not a sign.

9. Our pediatrician is only offering H1N1 shots from 8:30-11:30 on Tuesday am. This is a hard time for me to make and I would have to take Ellie out of school for this. This seems silly to schedule this during school hours. I'll make time to take Max because I'm not really sure he had it. I'm sure enough about Ellie that I'm not going to pull her out of school. Max also gets to restart his vaccination series at this visit. This should be fun.

10. I still need to make time to take Ellie in for a blood draw.

11. I need to get a stool sample from Max to take in. Good times.

12. My car is a disaster and I don't know when I'll clean it.

13. I haven't paid bills or balanced my checkbook in 3 weeks. Hoepfully nothing is late.

14. Have I said I'm tired.

Great news from the surgeon

Max had his first follow up appointment with the surgeon today and we got excellent news. The area that I was concerned about is probably not a fistula. There has been some separation of the superficial layer of closure, but he thinks the deeper layer is intact and he thinks that the superficial layer will close on it's own. We'll know more at our three week follow up, but he doesn't seem worried.
Also, we now get to advance to a soft diet!!!! This is big news for our hungry kiddo. Also, it's very exciting for mommy, daddy, and sister who won't have to eat standing at the kitchen counter and who can now go out to eat with Maxybaby.
WOHOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I feel like we survived!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We have a problem

I'm pretty darn sure there's a big hole in Max's palate. The interesting thing is it's over at the gum line on the side. I think they create a flap from that area to close the midline defect (which looks great by the way). I'm so depressed. Of course my mind has raced ahead. I'm already quite sure that Max's speech will never progress and that we'll be re-operating every year without ever successfully closing this fistula. (Is this even called a fistula since it's not at the closure site?) Clearly, he'll need a free flap if this is ever to be closed. I know way too much about the worst case scenario.

Recovery

Warning: read at your own risk. This post has details that not everyone wants to read. But, I'm putting it all out there so that those people getting ready for this process with their kids will have a better idea about what to expect.

We got home from the hospital on Wednesday afternoon and Max has been making slow improvements since then. That first evening he was pretty fussy, but he went to bed at 7:30pm and slept until about 7:30am the next morning with only two short awakenings for pain medicine. We all felt much better yesterday after our good night's sleep. He was pretty clingy yesterday and spent a good amount of time on mommy's lap snuggling and napping, but he didn't seem to be in as much pain. We were already able to decrease the amount of narcotic that we were giving him and switched to mainly plain Tylenol. I actually enjoyed yesterday. Remember that this is the boy who has always preferred daddy over mommy. Now he reaches for mommy and wants to snuggle up closely to me. This surgery has definitely helped move our attachment forward. Not that I'm recommending surgery solely for this purpose, but for those of you wondering if you should do a surgery fairly quickly after bringing your child home, I wouldn't hesitate. Max did not want to drink as much yesterday as he had on Wednesday. I don't think this was as related to discomfort as it was to the fact that he wanted real food. We are trying not to eat in front of him, but he saw sister eating a banana and cereal and he wasn't at all happy that he couldn't have any. It's no problem for us to wait to eat or to eat somewhere else in the house, but Ellie has to eat on time and with our small house there just isn't a great place completely away from him. Having Ellie home from school sick this week has added a whole new dimension to this process. Both kids have needed lots of attention so the balance has been difficult. And, don't forget that our nanny was out sick for half of the week too. Thankfully, my mom stepped up once again and was a huge help in balancing the needs of two sick kids. Our other big battle yesterday was constipation. This is our child who poops three times a day average. Yesterday was his third day without a bowel movement and he was definitely feeling it. He would hold his tummy and bend over crying, but could not poop. We ended up giving him two suppositories before we got some action. Not surprisingly, he wasn't a fan of these either. Other issues, Max has run a low grade fever since surgery - 99's. We aren't supposed to worry about it unless it gets up to 100.4 and we're hoping it won't. I'm wondering if this is a post-surgery phenomenon because it started right after surgery. But, another part of me thinks maybe this is mild H1N1. I don't suppose it matters much at this point since he's had Tamiflu and is on an antibiotic. We haven't gotten a great look at his palate. There's not a hole there anymore and it looks brown and crusty, but that's all I can tell. Okay, that's all I can think to report.

Max is out of surgery

Well, we made it. Everyone stayed healthy long enough for Max to have his surgery. Hopefully we'll all stay healthy through recovery as well. We met with the surgeon about 15 minutes ago and he said that everything went well. Max was a little "oozy" and lost a bit more than the usual amount of blood, but everything else went fine. The cleft closed, but it was "a little tight" so they used allograft (donor tissue) to complete the closure. We haven't gotten to go back and see him yet, but hopefully we will soon. I'm gearing up for a long night at the hospital (and a long next couple of weeks), but we're glad that we've made it this far.

FYI, Ellie is better today as well. She has been fever free for 36 hours. She was still a bit stuffy last night, but slept 13 hours and woke up a new girl.

Surgery Tomorrow - We Hope

Max's cleft palate repair is scheduled for tomorrow. We have been focused on this date for several weeks now and have rearranged our lives accordingly. We may be rearranging. Sunday morning Ellie woke up with a fever, congestion, and a sore throat. I'm guessing it's H1N1 since it's been working it's way through her school. We knew that if Max got any signs of illness he wouldn't be able to have his surgery. So, we started Ellie on Tamiflu immediately and Max got started on prophylaxis. Jason and I also took the prophylaxis. I can't imagine being down with this and trying to take care of Max post-operatively. Or one of us being sick and the other one having to take care of him by themself. So far so good. Ellie has been fever free since about 6am this morning, and Max, Jason, and I aren't showing any signs of the illness. We've gotten the green light for surger as long as Max is symptom free for the next 18 hours, so keep us in your prayers.

This is suck a yucky virus. Ellie hasn't been this sick in a long time. Thankfully she's tolerating it really well. Going to sleep has been difficult due to the congestion, but she went to sleep much easier tonight. Also, she's woken up at about 5:30 the last two mornings with a low grade fever and "feeling funny". I'm hoping she can get a better night's rest tonight because she does seem really fatigued.

The other kicker is that our nanny called me about 3 hours after getting to our house this morning. She had a fever, splitting headache, and was vomiting. I had to drive home to relieve her until my mom could get here to watch the kids while I tried to get a whole week's worth of work done in one day. Thank you mom. Yes, she's now on prophylaxis as well. I know these are not the CDC guidelines for treatment, but I've already seen too many young people die from this illness this season and I'll be darned if I'm going to let any of my family members be one of those patients. Plus, I think Max's surgery puts us in a special risk category.

I think Grandma had an interesting day with the kids. Ellie is such a creative soul that a day with her is never boring. When Grandma got here Ellie was modeling the dress she had made with tape, markers, and paper. I wish I would have gotten a picture of it, but she got frustrated with the tape and ripped it off before I could. Ellie also made a bowling set with paper, tape, and an apple. I have pictures of the bowling pins, but the apple was toast by the time I made it home. Finally, when I got home, Ellie decorated the birthday cake she had made for Jason. His birthday was yesterday and we got it baked, but with all of the illness it didn't get decorated and eaten until today. The design on the cake should you not be able to recognize it is a forklift just like at daddy's shop. She came up with that idea and implemented it herself.

So, now that both kids are in bed I'm starting to pack for the hospital tomorrow. I won't be able to finish until tomorrow since alot of what I need is in Max's room. I've got our DVD player and videos, the computer (once I finish using it) and charger, my phone and charger, some toys and books, a sippy cup and a regular cup. I need to add some clothes and personal items and my very important kindle and I'll be about ready. The surgery itself is going to be about 1:30pm. We need to be at the hospital at 12:30. I think it's going to be a long morning. Thankfully they're letting Max have clear liquids up until 10:30, but he can't have any solids after 1:30am and I'm not getting him up to feed him at that point. We just gave him a big dinner and cake. I think the surgery will take about 3 hours and then he'll be in recovery for a little bit. Grandma is going to watch Ellie until we get into a room and then Jason will come home to stay with her and I'll hang with Max at the hospital. As long as Max is taking liquids and oral pain medicine on Wednesday we should be able to come home late that afternoon. I'm already looking forward to that.

The Pumpkin Patch

I'm just getting the photos out there. I'll post details later.