Tuesday, December 15, 2009
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.
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.
Wednesday, December 9, 2009
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.
Seriously, look at this Santa. Ellie had a bit of trepidation, but warmed up after she got her blinking reindeer nose.
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!
My adorable niece
Ellie of course
Maxybaby loves the leaves
Tuesday, December 1, 2009
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.
Thursday, November 19, 2009
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.
Friday, November 13, 2009
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.
Friday, November 6, 2009
Monday, November 2, 2009
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.
Wednesday, October 28, 2009
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.
I feel like we survived!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Friday, October 23, 2009
Tuesday, October 20, 2009
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.
Monday, October 19, 2009
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.