Well today started off in true Schmidt Fashion…. a disaster. I got up two and a half hours early and STILL was late to our appt… because OUR CITY FLOODED. Half the city was out of power, there were trees down and the whole city traffic flow was impeded from the standing water. The rain came so fast and so hard we literally could NOT see to drive. It was pretty bad but even if it had taken us 6 hours we were determined to get to Cincy today!

So here is our journey on the road:

The crazy weird looking shelf cloud that brought the wildest rain I have ever seen….1 ft of water dropped on Lexington in under an hour… the guy in the mustang… his car was flood… the water was up over his doors!

Do you see the entire ROAD covered by water? I have never honestly been scared of water… today I truly wondered if we would flood and end up stuck!

Crappy Iphone.. but if you look closely you will see that there is a newspaper stand and a trashcan floating down the street!!!!!!!!!! The manholes were spewing water like volcanoes and the storm sewers were overflowing so much that the water could not even go down them!!
So needless to say it took us nearly 30 minutes just to LEAVE THE CITY. Always the excitement with the Schmidts. Then when we were on the highway the rain was sheeting so hard that we just had to turn on the hazards and go 35 for a lot of the way.

We managed to make it to Cincy at 9:15. Then I thought the appt was in GI… when it was in Multidiscpline… so we were 5 minutes late for the appt time but 20 mins late for the suggested arrival.

I had already sent Ky’s 13 page dissertation that I continue to keep updated with all of the diagnosis, meds, docs, etc. So they were prepared and I took a CD of all of our GI studies and Dr. Kaul kept that but somehow they did not get the FLOURO swallow studies etc on the CD. FUN. We had our feeding evaluation… let me tell you… those people pick you apart like REALLY do you think he entire intestinal system is failing because she does not chew every piece of food 30 times? And like I can MAKE a 2 year old CHEW… yeah… whatever.

Finally we get to see Dr. Kaul. I swear this man might as well wear wings. He listened to everything and talked with Ky and I don’t know what it is but something about him… just made me feel comfortable. He was very sure and honest and I appreciate that.

We talked about a great variety of things and learned the difference between VOMITING and GERD spit up. Which we had already established that Ky had two distinct forms of puke… so without knowing specifically we “knew”. We were glad to confirm that we did know what we were talking about. We also talked about the fact that Dr. Kaul believes that Ky’s Chiari is more significant that anyone has led us to believe. So… tomorrow I will RE-acquire my films from Bob’s office and hopefully I can pick those up tomorrow seeing as how I will be in Cincy tomorrow night (AGAIN) for our monthly Heart Center Board Meeting and I could just drop them to Dr. Kaul’s nurse then. He is going to give the films to Dr. Kerry Crone (Neurosurgeon in Cincy) and get his opinion.

But we will be moving forward with the Motility studies in spite of the Chiari. For right now Dr. Kaul said that his main concern is figuring out the source of her vomiting and intolerance for food. They switched her formula from Pepatament Jr. to EleCare and sent us home with three cans of Elecare and a script. So now I just have to get all of that changed with WIC and our home health. FUN.

Now comes the bad part. Ky needs an Endoscopy (EGD) and a 24 hour probe. He wants to know what the inside of her Esophogus looks like because it very well could be something in the Eosinophilic Disorders family. Its quite possible that this would explain her intestinal issues, colon, stomach, heart, urology, etc. So… at least this new testing may bring a means to the end. The best news is that we now have new options to explore.

On the Urology front I talked for a long time with Debbie, Dr. Alam’s nurse, yesterday and we were able to pick up some new caths to hold us over until the nursing company gets us our shipment. We also discussed having a Cystoscopy done to look inside her bladder and see if there is something there (may like Eosinophilis…) that would explain why Ky is having pain when cathing, peeing, and having her meds put into her bladder. We also discussed possibly doing a Vesicostomy which would eliminate our need for both Ditropan and cathing. Truly… what we are having to do to Ky to cath her is inhumane. so even though this would mean another surgery it would be a welcome relief for our daily life.

So… they said that we should have a date for the Endoscopy within two weeks or so… we will move forward and hopefully find some more useful information and a treatment. Until then we will hope that the new caths and the Elecare will help. Dr. Kaul said he does not anticipate that it will but we will try anything once right?

Here’s pics in his office today:

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