Tuesday, March 13, 2012

When It Rains, It SUCKS

Nothing can drain the life right out of a mom than to have to hold her daughter's hand while she's having an MRI.

Well, whatever life might have still been in me after having to hold her hands and wipe her tears while they numbed her and inserted the catheter.  And had to tell her that no matter how much she wanted to (and I wanted to) we could not just go home.

Bean, as some of you may know, has a condition called vesicoureteral reflux.  That means that when she pees, the urine refluxes back to her kidneys.  She was diagnosed when she was a year old.  She's been on a daily antibiotic since then and has had three surgeries, including re-implantation of her ureters.  Her Urologist is baffled as to why those surgeries haven't 'fixed' the issue.

Last time we had an appointment with Dr B it was just a couple of months after her dx with D.  He, and we, decided to just leave well enough alone for the time being and just keep her on the antibiotic since she hasn't ever had a break through kidney infection while she's taking it.  February marked the 'time to recheck things' point and I called to make appointments for tests and consultations for this week, Spring Break.

The doctor that performs the tests called Monday to change things from her regular X-ray procedure to an MRI because he felt she was pushing it on the radiation and he felt we'd get more useful and thorough information with the MRI.

We go tomorrow to talk to Dr B about everything, though we already know Bean's still refluxing.

This condition is something most kids grow out of by the time they are 5.  This should have been fixed with the first surgery, REALLY should have been fixed with the second, and we were given a 99% 'this will work' with the third.

I'm so over this.  Over Bean having to take an antibiotic every flippin day...which, in and of itself, can cause some long term issues.  Over Bean having to pee more than any normal kid, not even factoring D into the mix, which adds it's own wonderful peeing issues.  Over Bean having to have tests that hurt her when they shouldn't hurt at all...even when she's numbed, the catheter is very painful.

Oh, and it gets better!!  Because this was an MRI, and not an X-ray, we had to remove her pod...less than 24 hours 'old'...AND remove her dexcom sensor...barely 12 hours old.  This after having to do four in a morning four days ago and having to do yet another dex change last night because of either ???s or readings that were 100+ points off.

And not to keep whining or anything...it is Spring Break and although I am fully aware that I live in Alaska and that it's not technically Spring, temperatures BELOW ZERO are NOT OK.  Especially when you have to get up and drag the girls out of their warm beds to take Ubergeek to work.  UGH.


  1. So sorry that you all are having to go through this! I will be praying for you and your family.

  2. It does sound horrible Denise...I'll say some prayers too...would be nice if this didn't continue to be an ongoing problem for your little sweetie.

  3. They thought Elise had reflux when she was 9 months old because she kept getting UTIs. We had to do all those tests and I agree, they were awful. They had to sedate her once and I bawled my eyes out as I left the room. Praying that the doc finds some answers for you. That is just too much for a little girl (or her MOm) to deal with.

  4. Geez Louise!!! Sounds down-right SUCKY Denise.

  5. oh my friend I am so sorry that you girls had to go through all of that. :o( Big hugs to you both and I hope you can enjoy the rest of Spring Break together!

  6. I have nothing funny or sassy to say about this. I'll throw in a 'that sucks' with the rest of 'em and give you a cyber hug for good measure.


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