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Friday, April 5, 2013

Home... Feels SO Good!!

We are home.

I feel like I could end the post there and it would be just perfect ;).

We were discharged at about 11:45 am, then met David, Conner, and Ramya downstairs for lunch in the cafeteria before heading over to Ramya's urodynamics testing and urologist appointment at 1:00.  The urodynamics test went well.  Ramya is able to hold more than we thought she could, though she leaks a lot still.  The doctor thinks her bladder size is decent, and it doesn't seem to be too spastic or rigid.  He's thinking the leaking might be due to poor muscle control.  He thinks if we bulk up the area (not with botox, but another substance I can't remember the name of right now, I think it starts with a 'd'), she may not leak and she also may not need augmentation surgery.  He wants us to come in for an out-patient exploratory surgery so he can see if this is the case.  He also wants to check her mitrofanoff and try to get that up and working.  I asked if he can clean up her granulation tissue as well during that time and he thinks he can.

I talked to Dr. Zuniga more about Madi's episode, and he is in agreeance with me.  It seems they get "lucky" and find bacteria to blame for the seizures, and just don't explore further, even though neither of us (though I'm not doctor so I know my opinion only matters so much to them) think that is what is causing them.  Because Madi is cathed, and because she has renal reflux, she is basically always colonizing bacteria.  You could culture her at any point in time and find bacteria.  If that was the cause of the seizures, that poor girl would constantly have them!  If she had a bad UTI she was symptomatic for, or if she had the underlying bacteria plus something else going on, then that would make more sense to me.  I'm praying that I'm wrong, though, and the antibiotics do the trick. 

After we got home we went to see The Croods and eat ice cream. We laughed a lot and it is just what we needed!!!  After we got home and got ready, all the kiddos piled on top of me to go to sleep, as they are all missing momma and more clingy.  I tried to sneak out of the room, but Madi woke up looking for me.  She's a lot more on guard right now and worked up because of what had happened. 

Heading to bed soon and praying for uneventful and restful sleep tonight!!!  I pray the same for all of you!

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