that was a long day
All in all, it was exhausting, but Emma had a good time. Lots of one-on-one time with me and lots of time to check out the different floors at Children's, plus breakfast, snack and lunch there. She loved that part. Their cafeteria rocks and if you happen to be there tomorrow, they're having an Iron Chef competition at 11:00. I hope you don't have any reason to be there tomorrow. We also knitted together (Louisa Harding's Thinking Dress--scroll down).
The bad news is that her right kidney is damaged, but the good news is that it's
not too bad. The urologist said that it probably will not cause her any problems in the future. During the scan you could see that her left kidney was a normal shape but the right one looked like a kidney with the top chopped off.
The procedure itself wasn't bad--an iv-type thing (she did great), then lying still for a long time during the scan. There was lots of waiting around between the injection and when they can do the scan (1 1/2 hrs) and then again before seeing the urologist (same, again). It's pretty freaky taking your child into a room that says "nuclear medicine, though."
After talking further to him about the surgery, we are opting to go with the less invasive procedure even though the odds of success are lower (they have a 98% success rate at Children's with the open surgery and about 80% with the Deflux) and a certain percentage (can't remember off the top of my head) of kids end up having to have it repeated one or more times before it is successful or they then move on to the open surgery. He recommended trying it once. She'll then be re-tested for the VUR three months after that and, if it was successful, again 12 mos after. If it isn't successful, we will move on to the open surgery. In the meantime, she'll continue to take the daily antibiotics until we have a successful result.
I'm not sure when it will be. I have to call this afternoon to schedule it. Hopefully it won't be a two month wait like the DMSA was.
He also recommended having Lydia tested since she is in the prime risk group (<4, girl, sibling with VUR). I'm choosing not to think about that right now. She has her 18 month check up on the 2nd, so I'll talk to the pediatrician about it then.
I really cannot thank you all enough for your kind words, prayers and good thoughts for Emma through this.
The bad news is that her right kidney is damaged, but the good news is that it's
not too bad. The urologist said that it probably will not cause her any problems in the future. During the scan you could see that her left kidney was a normal shape but the right one looked like a kidney with the top chopped off.
The procedure itself wasn't bad--an iv-type thing (she did great), then lying still for a long time during the scan. There was lots of waiting around between the injection and when they can do the scan (1 1/2 hrs) and then again before seeing the urologist (same, again). It's pretty freaky taking your child into a room that says "nuclear medicine, though."
After talking further to him about the surgery, we are opting to go with the less invasive procedure even though the odds of success are lower (they have a 98% success rate at Children's with the open surgery and about 80% with the Deflux) and a certain percentage (can't remember off the top of my head) of kids end up having to have it repeated one or more times before it is successful or they then move on to the open surgery. He recommended trying it once. She'll then be re-tested for the VUR three months after that and, if it was successful, again 12 mos after. If it isn't successful, we will move on to the open surgery. In the meantime, she'll continue to take the daily antibiotics until we have a successful result.
I'm not sure when it will be. I have to call this afternoon to schedule it. Hopefully it won't be a two month wait like the DMSA was.
He also recommended having Lydia tested since she is in the prime risk group (<4, girl, sibling with VUR). I'm choosing not to think about that right now. She has her 18 month check up on the 2nd, so I'll talk to the pediatrician about it then.
I really cannot thank you all enough for your kind words, prayers and good thoughts for Emma through this.
Labels: Emma, reflux sux
posted by Gretchen at 11:15 AM
12 Comments:
I love it when children are on their best behavior for the doctors. It always makes me proud as you must be now.
Your decision to go for the Deflux first. I would take 80% for anyone of my procedures!
Thanks for the update and I am hoping the procedure goes exactly the way it should.
Sounds like good results for the situation. And I think the less invasive procedure is a good idea! I know I would have picked that and you know you have to do everything I do! :-)
The worst part about having Lydia tested is keeping her still.
Hopefully we can get together soon.
Did you get a time for the deflux to take place?
Good results.
glad you all survived a long and stressful day.
You are all in my thoughts and prayers.
Lindy
I'm glad to hear you've decided to give the less invasive procedure first, and that the damage to her kidneys isn't tremendous.
Sounds like a great mother/daughter day, despite the stressful situation and circumstances.
Oh Gretchen, I have been thinking of you all throughout this. My wee sister (the fifth child in our family) had a kidney dysfunction at age five which I am about to spell wrong(?) Glomerulonephritis, which results in kidney damage after a strep infection, one bullet I managed to dodge, even after two bouts of scarlet fever. Go figure. Please know I will be praying that Emma has a good go of it. Hugs to the whole family.
None of us are doing anything compared to you. Continued good luck, and knit on.
Thinking of you,
BIIIIG HUG,
j
Continued good thoughts, dear Gretchen.
Hi there, I have 2 kids with kidney reflux and right now am having hard feelings about what my youngest is going though. I really understand how difficult this is for you. My thoughts are with you and your family, I wish you all the best.
You're never far from my thoughts Gretchen. I'm so sorry you are dealing with this, and that Lydia is at risk, and poor Emma... I hope she's feeling ok.
I hope you ALL are doing well. Just wanted to let you know I'm missing you.
Just sending you good thoughts. I hope all goes well on the 18th!
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