I have birthday pictures to post and I just can't get more than five minutes at a time on the computer! Hopefully later this afternoon.
Peanut's nurse and I cath'ed her yesterday and her pee was cloudy and stinky with little particulates in it. I called urology, no doctor in the office on Monday. I called the pediatrician, he won't call in antibiotics without a culture. Ugh!
Then her seizures kicked up. They were the worst yesterday than they've been so far. I assume the UTI is to blame.
Today we go to the pediatrician to leave a sample and get on antibiotics. Tomorrow morning we go to the neurologist to talk about another seizure med and decide which one to start her on. Tomorrow afternoon we go to the urologist to be taught how to cath the mitrofanoff stoma. Last week all they did was removed the catheter that's been in it and told me to leave it alone for a week.
What happened to boring??
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.
5 comments:
Oh, I am sorry to read all this! Not good! I'm praying for you and Peanut, for all this stuff to clear up and for boring to come again.
Oh, sister. My girl is on her second UTI this month. We'll be starting her on another round of bladder wash.
I'll be praying for you and Peanut.
Boring definitely sounds better! I'm so sorry! I hope that her infection clears up soon and the seizures go away and STAY AWAY!!! Gavin always has some seizures when he is sick, so hopefully it's just the UTI! Hang in there Momma! HUGS!!!
If they told you not to cath the new stoma how is the urine leaving her body. I am new to this so don't understand. Praying that you get this taken care of and her seizures under control..
lots of prayers that you can get the issue taken care of and her seizures under control. Juniors seizures can be the first thing that lets us know he is ill.
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