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 function...it'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.

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