Wednesday, February 29, 2012

Urology Appointment

Yesterday we had our 1st uro apt. Despite being exhausted from having to get up extra early it was awesome because being the 1st apt of the day we were in and out in a little over an hour! First like always they went over her history and why we were there. Then they took her to US. It was a very quick one to measure her bladder, then back to the room to wait on the doctors. 1st the resident came in talked to us for awhile taking more history. She then told us that Fi's US showed that her bladder capacity is really high for an almost 3yr old, and that despite having soaked wet diaper right before the scan she was still about 60% full.

Then we waited for her to come back with the urologist. He said, "she clearly has alot going and I'm not surprised that she's having urinary problems" It was good/ not good to hear that, I always worry that a new specialist will look at her and be like, um, why are YOU here?

Anyway, for now he just wants us to watch her and how things play out. He feels that her constipation is a big factor in the urine retention. He also said that until we really attempt potty training we won't really see what the true extent of the urinary problems are or really be able to try to work on them with her. So he wants us to go ahead with the behavioral therapist to work towards potty training and come back in 3-6 months.

For now he gave us some info on how to try to prevent UTIs, since she's now at high risk for getting them, and also some other things to try to help get rid of the damn yeast infection. He says if we're still battling the yeast when we come back that he wants to do some further testing to see why she keeps getting them. Since it was a first visit and she's not potty trained he's waiting until our FU to decide if she needs to have urodynamics etc preformed. Overall it was a good apt, however, I'm not really thrilled that his only solution for when she has the screaming in pain episodes which have landed us in the ER twice is to give her motrin. At this point, I know that the pain will eventually stop and probably not bring her to the ER right away, but with a toddler it's hard to distinguish exactly what is causing the pain and I'd hate to miss something because it's just "bladder pain".

Monday, February 27, 2012

Quick GI Update

We saw Dr Charles today at Children's and he was really nearly horrified by the fact that she had gone through 5 cleanouts and 3 ER visits in one month. Of course it happened to be the month that he was out of the country lol.

He thinks that our current plan, no dairy, and 4, 1/2 caps of miralax is good since she's been doing better. He agrees that her getting sick in November was probably the trigger that set her on the down hill slide.

I asked him about several things today 1) her anterior anus and my findings about it requiring surgery, he doesn't feel that she does. 2)her reaction to enemas, he doesn't want her having them period 3)using senna and dulcolax, senna yes, but he doesn't want her using the dulcolax because it puts her anus out of her control 4)potty training, we will be getting into the GI therapy next month 5)urinary issues, he's still unsure if they are being caused by the constipation 6)gagging and spitting things out, still calling it rumination if it worsens she will need a scope to rule out esophigitis

So our current plan: follow up in 1 month. Use miralax daily, if no bm then we will do senna, if she goes more than 3 days without a true bm we will come back sooner and start therapy then. No fiber supplements. Keep and eye on her bowel habits and swallowing...and I think that pretty much covers it. We'll be back at Children's bright and early for urology with Dr Roth tomorrow.

Saturday, February 25, 2012

Busy Bees

We've had so much going on around here. Last Saturday I went with some friends to the Endymion Extravaganza, for those of you who don't live around here, it's a Mardi Gras ball. It was held in the Super Dome for the first time since Katrina. We had so much fun and it was nice to have some mommy time. To go out and hang out with adults was nice esp since with all that's been going on with Fiona lately, I've been pretty stressed.

She's still been having some episodes of painful urination, and frequently going 12+ hours without peeing. We are seeing Dr Roth at Children's on tuesday for our first urology apt. Hoping that he can give us some insight as to what might be going on. I also want to ask him about the yeast infections, she's pretty much had one constantly for the past 5 months and frequent ones before that. Not sure if that's in the uro realm of things to deal with, but I hope so.

We also have GI (Dr Charles) on Monday so it should be a busy 2 days. Interested to hear their take on what's been going on. I also really want to talk to them about our ER experience and my concerns about ever bringing her back to that ER, it was awful!

As far as the constipation goes it does seem like she is improving since coming off of fingers crossed that this was the solution that we needed. She's currently taking 4 1/2 caps of miralax a day and senna/ dulcolax suppositories as needed. We did the senna 2x a day for 1 week along with the 3 days of dulcolax and that was really the turning point. In awesome news Fiona has actually asked to use the potty and pooped on it 2 times! I'm sooo excited by this because I was really beginning to think we may never get to the potty training point with her. Since she's making progress on her own I really want to push to get her in the GI therapy program ASAP. I'm very sure now that her issue is not holding it in since she wants to go.

Of course with the good comes the It's always something. I know I mentioned this months ago, but Fi has been still chewing up food and then gagging and spitting it out. She's also swishing her drinks in her mouth, sometimes swallowing, others letting it roll out of her mouth. So I plan to ask about repeating her swallow study. We had assumed that her dysphagia was gone, but maybe we've just been over looking the signs the whole time...idk. I definitely want to rule it out though because she was at aspiration risk and since she's been coughing a lot lately I want to make sure it's not an aspiration thing.

Even with all of the craziness we've still been having fun. Fiona had a great time at the parades and caught tons of stuff. She told me she wanted to go to parades today and when I told her that there are no parades, she said "but why not?" We did Chuck E Cheese, got pictures taken, bought dressers and I made her a new wonder my house is a mess lol. I'll try to update after each of her apts and also when I hear back from Cinci.

Monday, February 13, 2012

A Mommy Obsessed (and Heart Week)

For those of you who don't know last Monday I got a phone call that Fiona was in severe pain and I needed bring her to the ER. So I rushed to her grandparents, picked her up and off to the ER we went. By that point she had peed and her pain had stopped. We realized that the pain and peeing were correlated.

In the ER we had to go in this creepy multi person, adult and child room, which in all of our trips to Tulane we have never had to do. They thought maybe she had a UTI and she was definitely crying when she had to pee again, the other theory was that she was constipated again and this was causing her to not be able to urinate.

We went for an xray and it showed that she was full of stool, again (3 days post cleanout), but the doctor said he didn't think this was the problem. So they kept trying for a urine sample and finally cathed her. The test was clear, so they sent us home with instructions to keep doing miralax, 2 days of dulcolax suppositories and 1 week of stimulant lax. Well it did work in getting her emptied out. I did notice also that after they cathed her she said she felt much better and did not complain again about peeing. So we still don't know exactly what was causing such severe pain.

Now that she's not just having poop issues, but pee issues (this has been going on to some extent since Nov) I'm even more frustrated...and I feel like our hopes of potty training are drifting farther and farther away.

So I took it upon myself to do some more research into motility disorders, and solutions. Well I found out that the test she had at 1, the barium enema has a false negative rate of 24% when checking for hirschprung's disease, and that it doesn't even look at the actual cells, which is what truly determines whether or not someone has this disease. I also looked up the anterior anus, her dx from children's, and found that it's a debated dx. Many doctors believe that there is no such thing as a malpositioned anus with normal's either a variant of normal or a perineal fistula.

With all of my new info in toe I'm going to request a suction biopsy at our next GI apt, to rule out HD more diffinitively. Secondly, I also emailed Cincinatti, the #1 GI hospital in the country, with the only Colorectal Institute. They already emailed me back and the best thing their email said was "we are happy to help your child". They sent me a request for certain records to send to them. Fi's Dad is very against the idea of Cinci because he is always against having testhing done and just would rather say, "well her body always works funny, what are you going to find out...etc" I want answers, or at least to get her feeling better so that we can get her potty trained and in school...he's content though and thinks things are good enough.

With all of this GI stuff going on I sometimes forget about the other big part of our journey, the heart stuff. This week is CHD awareness week. Fiona is 1 in 100! I would have never known that so many kids are affected by heart defects until I was thrown into this world almost 3 yrs ago. We are so lucky that Fiona, despite not having a prenatal diagnosis, had her CHD caught early and was able to have life saving heart surgery at just 2 days old. We are so grateful for all of the doctors and nurses who have kept Fiona here with us. It isn't always an easy journey, but I wouldn't have it any other way. I am a better person and more importantly a better mommy because I am a heart mommy.

Thursday, February 2, 2012

She's Full of Poop and I'm Vindicated

I don't think ever in history has any parent heard the words, "I reviewed the films and you're right, she's completely full of stool", and felt like doing a happy dance as much as i did. It's not that I didn't know it, but it was sooo good to hear that I, the measly parent, do know what constipation looks like in my child.

Unfortunately this means another cleanout, if you're keeping tabs that's number 3 in the past month and they are no fun. Basically it involves giving nothing but clear liquids and laxative until she poops clear. This is a miserable process and usually involves many tears shed and a very grumpy little girl.

Once we are finished with this Fiona will go back on a milk protein free diet and we will trial using soy milk. Hopefully this will be the change that helps. In 2 months we'll follow up. If we've seen an improvement then we'll stay just milk free, if we're in the same spot we are now she will have to go back on an elemental formula like Elecare Jr. It's really tricky to do such a restrictive diet, so we don't want to have to go that extreme yet.

On a side note February is CHD awareness month...I'll do a heart post soon...but for today it's all about the poop :-)