Category Archives: reflux

VCUG take two

Kaylee had a SUPER early morning. And she is NOT an early morning person. We left the house just after 6 am and headed to the Children's hospital for her VCUG imaging test.

 

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I had the gal who checked us in at imaging snap a quick photo of us. I let Kaylee put lipstick on last night. it stained her face. She had pink smeer all day.

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They hand out coloring pages and crayons to the children to keep them entertained while they wait.

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The nurse and social worker (child advocate) were dying over her little photo shoot. They said it was the best thing ever watching her strike her poses and giggle over the breeze on her backside.

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She did amazing. She only yelled "OUCH" when they put in the catheter (expected and understandable), but otherwise was happy to chat away and play on the ipad. Kaylee actually used the bed pan this time so they were able to get good imaging. It looks as though the duflux procedure didn't take at all. Frustrating.

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Her comfort toy for this visit was her new Twilight Sparkle. She told her advocate ALL about My Little Pony. The advocates give the children a toy after procedures/test/imaging and she found Kaylee a new Twilight Sparkle. Kaylee was VERY pleased.

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Two hours later we were done. And we were both tired all day from our abnormally early morning. We meet with her urologist next Friday. Hopefully he will have something new to share with us.

Post surgery ultrasound

Kaylee had her post surgery follow-up today after playgroup. A sweet friend watched Regan for me so I didn’t have to wrangle him. It made a world of difference.

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Kaylee drank 20 oz of water for the ultrasound. Her bladder was FULL. She peed right before we got called back so I was worried that the tech wouldn’t get good readings. I had her guzzle more water just minutes before she got called back.

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I think the tech Nancy was concerned about it too since she mentioned Kaylee having just voided her bladder, but we didn’t need to be. Her bladder was already SO full again.

Nancy, “Wow. I am surprised at how full her bladder is. It’s huge! She just peed right?”

She had to pee again half way through. They needed her to for measurements, and she HAD to go again.

I love that she is so happy and relaxed for her ultrasounds now. It just makes life nicer.

“It’s not scary or ouchy Mom. It just tickles!”

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While we waited for Dr. R. Kaylee decided to give Lamby a check up.

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She thought that it was too funny.

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Her deflux procedure looked good on the ultrasound, BUT she’s been just this week having UTI symptoms, and her urine had white blood cells in it. So it’s being shipped off to the lab. And while we wait for results she is getting a double dose of her daily antibiotics.

Dr. R. also mention she had some “pooling” of fluids, but that it was nothing to worry about and was common in people with extra tubes like Kaylee has. It was more of a FYI sort of deal. So it’s getting jotted down lest I forget.

Her Dr. asked her how she was doing.

“I doing good. I just have anodder UTI.” Just so matter of fact like.

Dr.,”WOW. You are really smart.” There was high fiving and fist pounding.

Ya. We think she’s pretty smart too.

Oh, and she peed again right before we left. Three times in one hour! And it was quite a lot each time. I swear by the last one you could have bottled what was coming out of her! Crystal clear. If I hadn’t been in the bathroom with her I wouldn’t have believed she actually went!

Phoenix Children’s Hospital

Fair warning this is a long post for Kaylee’s book, and for me to remember.
She was so happy with her prize. I forgot the camera and my phone takes crapy SLOW pictures. So I ended up with a picture on the tail end of a smile.

We finally got Kaylee into a pediatric Urologist. She has now had two ultrasounds (one in UT and one in AZ) and is a pro and peeing in a cup. So sad.

This last ultrasound was done in office and the tech was awesome. Since Kaylee has had one before she was super relaxed about it. She just chatted this guy up the whole time he was getting images of her bladder and kidneys. He was pretty impressed with her attitude.

Her Dr. was very nice and went over her whole history with me. Dr. R was very thorough which I always appreciate. He decided she needed more extensive imaging done since both her ultrasounds came back normal looking. So we left the office knowing that the Children’s Hospital would be calling us soon to schedule her VCUG test. That was May 2nd.

Friday (May 11th) morning she and I dropped Regan off at the Day’s house (where he had a blast) and headed down town to the children’s hospital. She was excited that it was, “”Just the girls. No boys allowed.”

It was my first time being in a children’s hospital and I have to say it was VERY nice. Kaylee was fascinated with the floor (has all these color changing lights.)  She was also very spoiled by everyone. It was a very different experience from her last hospital imaging test.

Anyway… Kaylee she’s feisty. And stubborn. She did not want to open her legs for the catheter. Not that we could blame her. And we all had to tell her to relax and breath because after it was placed she started pushing it out. Evidently she has good control of those muscles… They ended up taping her catheter in place. After her catheter was in place they started filling up her bladder. Kaylee was so busy playing games on an iPad to even notice.

The Dr. asked her which t.v. was cooler. The iPad or his t.v. of her insides? She said his t.v. was cooler and I think he fell in love with her a little. He said he NEVER gets that response to that question. She happily watched his t.v. for a bit to see the “magic water” fill up her belly, then went back to playing on the iPad. The Dr. was just all smiles after that.

After her bladder was full to bursting we tried very hard to get her to pee into the bed pan. Well Kaylee has always been a potty pee-er. Kid will just hold it until she is on a toilet. For hours if she has too. No joke. I had mentioned several times that I didn’t think she would go in the bed pan. So all the nurses and the Dr. are telling her it’s a special princess potty and that if she just pees in it she can have a Barbie (Serious bribery was happening. The Barbie’s are usually saved for the cancer patients.), and she’s looking at everyone like we are all crazy people.

The Dr. decided to move the X-ray camera away so she could sit up to see if that would help. 15 minutes later she released maybe an ounce, and then announced that she was done and ready for her Barbie. We could all clearly see on the monitor that she was SO not done. The Dr. then decided that Mom was right. Kaylee was just not going to pee in a pan on a table. Laying down, sitting up… doesn’t matter.

So what we ended up doing was having a nurse hold open the bathroom door (attached to the imaging room) while I RAN Kaylee to the toilet where as soon as her cheeks touched seat the flood gates opened. Then as per Dr. orders we Ran back to the table without wiping or washing (germaphob me had issues with that…and we washed up ASAP.) laid her out and slid the x-ray camera over to get images. Not ideal for the test as we were trying to get images while she was peeing, but we did get enough imaging for answers.

He was able to see that Kaylee has reflux. The scale is 1-5, 1 being low and 5 being high. Kaylee’s reflux is a 2. So not the worst that it could be which is nice.. I guess. And we now know why she keeps getting UTI’s despite our best efforts. It is such a blessing to have and answer. So for now she is on a daily low dose of antibiotics.

We will meet with Dr. R soon to discuss our options. We are hoping he has some good ideas and that she will not have to suffer any more UTI’s, or be on long term antibiotics.

All in all not a bad visit to the Children’s hospital. She went in calm and came out smiling after a very uncomfortable awkward test. Ya. She’s freaking awesome.

And Kaylee was quite proud of herself,”Mom, I am SO awesome! Huh?”

My response, “Ya. Freaking AWESOME!”  Imagine us doing a little dance, and then we high fived.

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