We finally saw the urologist yesterday as a follow-up to the VCUG. He reiterated what the doctor doing the test said - there were no signs of kidney reflux, which means the hydronephrosis is being caused by the neurogenic bladder not emptying. This in turns means that we need to increase the catheterizing even more. Which of course I cannot do on my own, without my husband or nurse. So, we're definately on for the Mitrofanoff procedure.
I asked him about an MRI of her spine, and he said to have neurology order it. Even if she has a tethered cord of chiari malformation that can be repaired, he said it won't help the neurogenic bladder. It could stop it from getting worse, but it can't be reversed. He says that either way, he is pretty sure she'll be catheterized for a very long time, if not forever.
So we are waiting on surgery authorization. He said he is booked solid until September! Geez. I explained that I can't cath her as many times a day as he wants, without this surgery. And then in a weaker almost crying moment, I explained that I am the PTO President next year and it would be a HUGE problem if she's in the hospital the first month of school. :(
We are going to be the number on case on his cancellation list. He said it's common for surgery to be cancelled during the summer, so he feels confident we will get in sooner than September. We just have to wait for authorization.
In MY medical news, I had a follow-up appointment with my spine doctor. The epidural injection we did a month back only lasted about 2 weeks. He wants to try it one more time, in a slightly different location. I am waiting for authorization for that also, so I can schedule. He prescribed me an anti-inflammatory and some muscle relaxers, but I can't take those while home taking care of Peanut!
I am taking Monkey to Disneyland a couple days next week, so the doctor wrote a note saying that I can't walk or stand for more than short periods of time. Hopefully this will help us get to through the lines quicker, or I will be in a world of hurt. I am excited though, Monkey is going to LOVE it!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
4 comments:
Prayers that the authorizations will come through quickly.
Have a great time at Disneyland.
I'm sorry it's not getting easier with Peanut quite yet! Hopefully the surgery will be scheduled soon so you can have it help.
As for the epidural injections: they usually schedule 3. The first one doesn't last long at all or doesn't really help. The second one you feel like you died and went to heaven and are tempted to cancel the third. If you don't have the third, the relief will be much shorter lived than if you have the third, so DEFINITELY do the 3rd! Good luck!
Enjoy the time with Monkey boy!
I pray that her surgery is sooner for you! It must be so hard cathing her so often!
Have a great time at Disney!
You'll love the Mitrofanoff. How often are you cathing? You won the picture caption give-away. Send me your address via e-mail (look for contact me on my blog) and I'll send you the tatted cross.
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