Gaelicspirit (gaelicspirit) wrote,

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Visit to Children's Mercy

Hey all -- sorry about two posts in two days. Don't feel like you have to read or respond. Hope everyone got to see the epi last night!! :)

So, as some of you know, the hubs and I took Mo Chuisle to Children's Mercy in Kansas City yesterday for some tests to see if we could get to the bottom of her frequent high fevers. There are two going theories right now: JRA or Periodic Fever Syndrome. Both are auto-immune disorders, both could potentially be outgrown, but the JRA has the lasting effects of joint pain and damage.

Because neither can be confirmed through just blood work on a two year old, they have to rule out other possibilities. One such possibility is frequent UTIs due to abnormal structure of the urinary tract or reflux. Since Mo had two UTIs in the last 6 weeks, the doctors, frankly, were hoping these tests would confirm that diagnosis and we wouldn't have to go down the road of an auto-immune disorder.

The hubs was amazing. I was tense and quiet all morning prior to having to leave. My head hurt and I was queasy. He told me that I needed to relax because Mo Chuisle really responds to my moods. She always has -- she seems to pick up on them like radar. Which is probably normal for kids, but she's my first and only, so I'm uber-aware of it. Hubs printed up some material on the tests they were going to do on her and let me read it over. I both comforted me and made me more anxious -- especially because it said "if your small child can't hold still, they may be strapped down to the table." ACK!

We took her to McDonalds on the way out of town because chicken nuggets have become her favorite food. *Bad Gaelic* I drove to the hospital while the hubs sat in the back next to the baby and talked her through the tests, showing her the print out. She listened attentively, and when he was done, she said "'Gin!" As if he were reading her a story. I had to chuckle at that.

I was really impressed with the hospital. It's totally geared toward kids. And that was both amazing and heartbreaking. One little guy was wheeled past us with a mask on and tethered to an IV Pump, but instead of being on a bed, he was in a wagon. The nurses and techs squatted down so that they were at Mo's height when they talked to us, making their prescense much less imposing. And they talked us through each proceedure step-by-step. There were murals and toys and all kinds of distractors for kids of all ages. I knew she was in good hands.

They let me sit on the bed and hold her while they did the renal sonogram, and hubs and I both held her -- instead of me and two nurses like here in town -- when they drew blood. She cried pretty hard, but she didn't buck and fight like she's done before. Once she fought so hard I pulled a muscle in my side holding her. This time, they were able to stick her once and get what they need.

Then came the VCUG, which is a dye test to see inside her urethra and bladder. That was long and hard and exhausting. She cried and clung to me, but again, they made it so that she didn't fight them when the cath went in or when they filled her bladder with water. The only problem was that to finish the test, she had to pee. Which she wouldn't. We spent 45 mins trying to calm her and entice her to pee -- water flowing, water poured on her lower half, toys to distract, finally she said, sobbing, "Mama, sing. Birds."

So, I gave a little impromptu concert starting with Mary Poppins' "Feed the Birds" and went through every Disney tune I knew, then onto "Carry On My Wayward Son" and "Heaven" then into "Nothing Else Matters." I was self-conscious at first, but I just started at her big blue eyes and watched her calm down, and seriously then, nothing else mattered.

They gave up after nearly an hour and told me what they could see. They weren't able to give me the results of the renal sonogram or the blood tests, of course, but from the VCUG they could tell she was "structurally sound" and didn't have reflux with the water going in, they just weren't able to tell from voiding since she refused to pee. But they suspected that her UTI's came from the fact that she holds it.

So, what that means is that the frequent high fevers are not from chronic UTIs. Which is something, I guess. But I still don't know the next steps. I'm waiting on a call from the peds office here in Lawrence to see what we do next. Because she's due for a fever here in a week or so and I really, really don't want to have to put her through this all again if there is a way to treat one of those two syndromes.

She bounced back a lot quicker than the hubs or I did. She was giddy upon being home and we were laying on the couch like wrung-out wrags. Kids are amazing, I tell you. All those tears, all that sobbing, and she was ready to go to the park two hours later.

Hubs has some new meds for the Crohns that he's trying out--hoping for no random side effects like the pancreatitus. But he's getting a bit discouraged. He's got a great heart and a good head on his shoulders, so I just need to be strong for him and remind him, as he's so often reminded me, that we'll get through this.

One day at a time.


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