UPDATE: The test went well! Phoenix Childrens Hospital is AWESOME! We had such a better experience than last time. At Banner Desert, they had to try several times to get the cath in, this time it took only once. The whole procedure went so much better. Also, Ava's urologist recommended we ask for a Life Care Specialist. She was great. She helped explain things to Ava, got her excited about her hospital gown and kept her occupied with a princess pony movie, magic wands, etc. And even though Ava was scared she said, "Hi Doctor" with the sweetest smile and cutest voice ever (those of you who know Ava, know she has THE cutest voice). The doctor was taken aback that she was so sweet with everything going on. He said "that was quite possibly the sweetest thing I've ever seen........ no, I know it's the sweetest thing I've ever seen.". Anyway, after the procedure, the doctor said he didn't seen any sign of the reflux - meaning she outgrew it!! He's got to look at the images a little closer, but so far the news looks great. That means no surgery. Next Thursday we'll go to her urologist for an ultrasound to check for any kidney damage that could have happened over the past year, but I'm thinking (hoping) that it will be good too. Whew! I'm so glad the test is over - at least for her anyway. If we have any more kids, they have a 30% chance of the same problem and would each have to be tested when they're a few months old. But, at least it will be familiar territory and not as scary as the first time around. Thanks for all the prayers and well wishes. Love you all!
Well it's been a year since Ava was diagnosed with urinary reflux (urine backing up into her kidneys, which can cause kidney damage). She been on antibiotics for a year while we've waited to see if her body will fix the problem itself. Tomorrow morning we go to Phoenix Children's Hospital for the procedure and I'm really nervous. Luckily since Joe is out of town on business, my sweet mom is coming with us. I'm more scared this time than last time b/c Ava is so much older and she'll remember this and won't be able to figure out why we are doing this to her. It's a painful procedure and they can't give her any drugs to sedate her b/c it can interfere with the results. I just can't handle when my child is looking at me, crying, and asking why this is happening. Just plain sucks! Anyway, the test will tell us if she needs surgery or if the problem fixed itself. Hopefully this will be the last test they'll have to do. Then, next week, she'll have an ultrasound of her kidneys to see if any damage was done during the last week. That's the scariest part. Once there is damage, there is no correcting it. Anyway, I just really hope Ava will be brave. This little girl is too sweet to have to deal with this!
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14 comments:
My thoughts and prayers are with You and Ava tomorrow.
I'm so sorry she has to go through that. We'll be praying for you.
Oh Alisa, there is nothing worse than watching your baby suffer and there's nothing you can do to help her. Hopefully it will have corrected itself and this will be the last of it. Stay strong and we'll keep sweet Ava in our prayers.
We're praying for her. She is too sweet to have to deal with this!
Poor baby. I hope everything goes well for her today, I will keep her in my prayers.
We love little Ava! So glad she doesnt need surgery!
Alisa,
my baby has the same thing! She spiked a fever @ 5 weeks old and we had to take her into the ER where they did all these invasive tests, including a lumbar puncture :( horrible. Anyway, it turned out to be a UTI which led us to do all the other testing 2 months later to find she too had the urinary reflux. She's been on furidanton [sp?] since then and they'll retest her when she turns 1. I know EXACTLY what you mean when she is laying there strapped down just staring into your eyes while screaming, not knowing what the heck, while you just stand there trying not to fall apart yourself. It is AWFUL. I feel for you. I do not look forward to going through that again come summer. It turned out that Chloe was a stage 3 out of 5 I think? in severity so she has a 50/50 chance of out growing it. What about your daughter? I just pray they both can out grow this on there own!
Your empathetic cous,
Kami
Hey Kami! Do you have a blog? I didn't know where to respond to your question, so hopefully you read this!
Ava's was in between a 3 and 4, and the good new is that they don't think she'll need the surgery!! I need to update my post now that the test is over. We'll get the final results next week and they'll do an ultrasound to look for any kidney damage. So, we're almost done with all the tests! Hooray! So, hopefully your little girl will outgrow it too. Call me if you have any questions. We went to Phx Childrens this time and it made a HUGE difference in how Ava handled the procedure. Hope you're doing well. Love ya!
Alisa
She is so adorably precious! What a cute girl. Back in the days when I was working, I did those procedures to children. It's always hard. I know it seems scary, it is definately more scary than painful. You are being a great mom just by being there with her. I can't tell you how many parents can't deal with what tests their children are having, so they would leave the room. Their poor kids would freak out with just us strangers there.
You can do it! We'll keep your family in our prayers.
I am glad I was able to go with you. You were a brave little Mommy and Ava did great, all things considering. It is amazing how soon she got back to her old self. You guys have been so blessed lately. We love you all.
Wow! What an ordeal. As a mom there is nothing I want to do more than take away the pain for my kids. I am so sorry you had to watch your baby go through such a hard thing. Take care of that sweet girl. I hope things will be easier from here on out.
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