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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.


 

Comments

( 30 Tall Tales — Tell Me A Story )
apieceofcake
Oct. 31st, 2008 03:38 pm (UTC)
Yep kids are amazing! And it sounds like your doing an amazing job with both her and hubby :-)

Hope your hubbys meds work properly *huggles*
gaelicspirit
Oct. 31st, 2008 03:46 pm (UTC)
Thanks, Jo. I appreciate that. :)

Dunno why this post is acting so wonky with the highlighting...
(Anonymous)
Oct. 31st, 2008 04:37 pm (UTC)
**HUGS**
Hey girl....sending you a hug
mtfbwy
gaelicspirit
Nov. 3rd, 2008 03:21 am (UTC)
Re: **HUGS**
Rodents of Unusual Size? I don't think they exist...

WHUMP!

Never has there been a more accurate definition of life as a parent...

mtfbwy
eaglegirl6
Oct. 31st, 2008 04:59 pm (UTC)
I'm so sorry you guys are having to go through all this. Thank goodness you have each other for support and that you've raised such a wonderful child who can roll with the punches that are thrown her way.

And don't forget, YOU have a great heart and a good head on YOUR shoulders too, and make sure YOU ask for help when you need it. We women are trained to be the one GIVING the help and support, but we need to ask for it too.

In seemingly a minute, you'll look back and she'll be going out on dates and getting ready for college...

Sending big hugs and virtual wine bottles... :)
gaelicspirit
Nov. 3rd, 2008 03:20 am (UTC)
*sniff*

Thank you, my friend. This is going to sound very "woe is me" -- but I don't mean for it to. I kinda... forget about me in all of this. Until, y'know my body freaks out and I have to pay attention.

Thanks for the virtual wine bottles. I look forward to raising a glass with you in person. :)
annj_g80
Oct. 31st, 2008 05:38 pm (UTC)
Hey! I can't even begin to imagine how it must feel to have your daughter being put through all this. Still it sounds like she's the most amazing kid, bouncing back like nothing happened.

You know, little children tend to imitate their parents, so I'm guessing, that you're handling this pretty well, too :-)

I don't envy you for all the stress you are having. So I'm sending you a virtual hug right now:

----> [here goes hug]<----

Hehe and you know what? Your hubby sounds almost as awesome as Mo *lol*.

gaelicspirit
Nov. 3rd, 2008 03:23 am (UTC)
My hubby is rather awesome. I love him. Which, I suppose, is a bonus since I'm gonna spend the rest of my life with the guy. ;)

Thanks for the imitation comment. That made me feel really good. I know we're not out of this yet, but at least I have a firmer grasp on the controls. For now. :)

Thanks you for coming by.

*HUGS TIGHT BACK*
mtee
Oct. 31st, 2008 06:03 pm (UTC)
You are good parents and that's why your little one bounces back. When there's love all around - you feel safe! She knows Mom and Dad will always be there -- she trusts you and you don't disappoint!

Prayers for everyone! Strength is the best. You are there for him and he's been there for you! What a great example for your little one.
gaelicspirit
Nov. 3rd, 2008 03:24 am (UTC)
Aww... *sniff*

You just made me get all... squishy. Thank you so much for that.

*hugs*
jennygeee
Oct. 31st, 2008 08:22 pm (UTC)
How awful to think that there was a possibility that she would have to be strapped down for the tests, thankfully that didn’t happen.

I can just hear her saying ‘gin’ in her American accent - that is just so sweet, 

What a lot for her (and you both) to have to go through, all those tests, and on such a little one too which makes it worse as they just don’t understand.

I can understand how you were emotionally exhausted when you got home; it was a terrible time for you both.

Never fear Gaelic, you are an amazing mother! You are all going through so much at the moment and yet you keep so strong. My thoughts a prayers are with you and your family as always and I really hope your husbands medication helps.
gaelicspirit
Nov. 3rd, 2008 03:27 am (UTC)
Thank you, Jenny! You say the nicest things and really make me feel better than I know I am. I read your post, took a deep breath, and kinda did one of those squared-shoulder moves and took on the weekend. :)

She trick-or-treated for the first time on Friday. I expected to stay with her Aunt and hand out candy, but when she saw all the other kids going, she was not ABOUT to be left behind, so she grabbed up her "punkin'" bucket and headed out. Took her about 3 houses and she got the hang of it. She'd go up to the door with her much older cousins (she was a fairy princess) and say trick or treat and thank you without being prompted, then run back to me saying "YOOK MAMA!!!" at the top of her lungs.

So. Stinkin. Cute.

*grins*
looselyspeaking
Oct. 31st, 2008 08:32 pm (UTC)
What a day you had, I can only imagine. And how lucky is Mo to have two brilliant and caring parents seeing her through that day.

It's all sounding much brighter and I hope that it continues this way for Mo and that the tabs for hubs work too. My friends daughter has Crohns, since 18 months, shes now 12 and its in remission and she's doing good. But I know the highs and lows she went through, so my thoughts are with you both.

Take care, Jane :)
gaelicspirit
Nov. 3rd, 2008 03:28 am (UTC)
Thank you, Jane. :) It feels good to have you on my side. :)

PS
The Wizards scored a goal in the 2nd half, but the Columbus Crew tied it up during stoppage time. It's a two game deal, so whoever wins next Saturday advances. We sat right behind the Cauldron (the Die Hard Fans) and the energy was palpable. I was as bad as the rest of 'em. :)

But, that's my last live-and-in-person soccer game this year.
(Anonymous)
Oct. 31st, 2008 10:37 pm (UTC)
Skim here-- :-)

I'm sure that day was so, so, so very difficult for you and your husband. I'm glad the hospital visit went as well as can be expected. Kids can be very resilient; if only adults could be that way too. Maybe it's because the older we get, the more jaded our worldview gets. We gotta learn to let go and just have more fun. Life is so much more less complicated from a kid's point of view.

Anyway, just wanted to let you know I came over and to see how the visit went. I was thinking about you all yesterday.

Have a fun trick or treating with Mo! I bet she's going to be something ridiculously cute!

Sending you hugs from down south.

Skim :-)
gaelicspirit
Nov. 3rd, 2008 03:29 am (UTC)
Hey there, Skim-girl. Thanks for coming by and especially for leaving such thoughtful words.

I really appreciate it and I thank you for the hugs. :)

Gaelic
yasminke
Nov. 1st, 2008 03:15 am (UTC)
Hopefully you'll get some answers soon, because once armed with information, you'll be able to handle it.

::Hugs::
gaelicspirit
Nov. 3rd, 2008 03:30 am (UTC)
Ain't that the truth. My little brother used to watch the GI Joe cartoon, and at the end they'd do a safety mini cartoon, with the slogan: "Now you know, and knowing is half the battle."

I carry that with me. 'Cause... it's so, so true.

Love the avi, by the way. I can feel that hug.
(no subject) - yasminke - Nov. 3rd, 2008 08:10 pm (UTC) - Expand
novembersguest
Nov. 1st, 2008 04:20 am (UTC)
Oh, poor baby. My baby-girl had to have that same test done because she was having frequent UTI's and it was terrible...and she didn't want to pee either. We finally did manage to get her to go, but it took FOREVER. Her tests came back fine, so I guess the UTI's were something else. Part of the reason they tested her was because I had kidney infections so frequently as a kid that I have scar tissue on one of my kidneys...I guess maybe they thought she might have a problem inherited from me.

Anyway, I'm glad she made it through and you two made it through. I'll keep my fingers crossed that hubby's meds work well. I know that is a constant source of worry.

I hope you guys get to the bottom of it soon and that its good news and that she will outgrow whatever it is soon and without any effects. I'm still here if you need to vent.

Remember to take care of YOU, too!
gaelicspirit
Nov. 3rd, 2008 03:32 am (UTC)
Ah, you poor thing! I wish I'd known -- we could have commisserated. Of course, your girls' test was probably years ago, but still.

Thank you SO MUCH for coming by and for offering me comfort when you have so much going on in your life.

You're going to laugh at me, but I've got my iTunes on random, and Neil Diamond's "Hello My Friend" just came on and it got me all smishy. Miss you my friend.

*HUGS*

Gaelic
gumnut
Nov. 1st, 2008 12:36 pm (UTC)
Oh god ::biggest hugs:: I went into meltdown just because KJ had her immunizations. You have my greatest sympathies and best wishes for going through all those tests with your little one. I would be a complete mess (something I have to work on if I'm ever going to be good enough to be there for KJ when she needs me). I hope you don't have to do that again.

Thinking of you.

Nutty
(this parenthood thing can be downright scary)
gaelicspirit
Nov. 3rd, 2008 03:35 am (UTC)
Immunizations are hard, though! And they seem to have so many before they're one. No worries on the meltdown, hon. I did the same thing, and I know you held her tight and crooned to her and comforted her when it was all done.

I don't know... do you guys have Tylenol over there? Or something like it? I always gave Mo Chuisle a dose of Tylenol before her shots because I knew she'd be uncomfortable and it helped to stave off the inevitable reactionary fever she'd get.

Being a complete mess when your baby girl is going through something is definitely warranted. The only thing that stops me from going to pieces in front of her is knowing that she watches everything I do and her eyes have no filters. They take in everything. And she feels it all. So I'm smiling and strong and brave and then when it's all over, I make an excuse to step away and then I tremble and cry and gasp.

And then I come back and do it all over again.

You're right. Parenthood is probably the scariest job out there.

Next to cleaning the top of the Eiffle Tower. That sounds pretty scary to me.

Gaelic
lovinjackson
Nov. 2nd, 2008 06:32 am (UTC)
Hey

Sorry I took so long to get to this. I read half of it before I left for the con yesturday and had to leave the rest of it when I remembered I needed to go to the bank before hand ... i was thinking about it during the day coz i never got to read the rest of it.

Glad she bounced back from the tests. Kids are amazing and resiliant and thats something I guess. It's a shame you still have to wait for results even though obviously you would have to. I'll be anxiously waiting to hear what they come up with and I hope shes okay if the next fever comes *hugs*

Good luck to your hubby for the education *Big hugs to you all*
gaelicspirit
Nov. 3rd, 2008 03:35 am (UTC)
Thanks, girl.

She's a corker, my baby. :) Guess that's something, huh?

Take care of you.
(no subject) - lovinjackson - Nov. 3rd, 2008 03:38 am (UTC) - Expand
ala_tariel
Nov. 3rd, 2008 08:23 am (UTC)
Hope you are not mad at me, but why I keep reading JRA as Jensen Ross Ackles? :))
gaelicspirit
Nov. 6th, 2008 12:33 am (UTC)
LOL

Not mad at all! I can't believe *I* didn't think of that. I'd much rather her have *that* kind of JRA... hee.

Thanks for the smile.
(no subject) - ala_tariel - Nov. 7th, 2008 01:21 pm (UTC) - Expand
may7fic
Nov. 9th, 2008 02:03 pm (UTC)
Oh, hon, I only just now read this. That day must have been a real workout for you and yours. It sure sounds like the hospital and staff were terrific though. And your daughter sounds like a real trooper, spunky as all get out. I do hope for all your sake's they get to the bottom of this soon.

I know you've mentioned your hubby's health in the past but I hadn't know it was Crohns until now (that must've been mentioned in posts prior to us friending). The college age son of one of my co-workers has it as does one of the people I placed a pup with 8 years ago. What a rotten, rotten disease. I sure hope the new meds are helping him too.

Take care and {{{hugs}}} to the 3 of you!
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