July 12, 2010

Update on today's happening's and the disappointing test results

Unfortunately, Annabelle woke up this morning a little warm (99 temp), then proceeded to vomit up her morning milk then went immediately back down to sleep. So it was pretty apparent that she wasn't feeling well and sadly we are getting pretty darn good at catching the signs of a UTI. Thankfully, we were able to get an afternoon appointment with Dr. McCormick, her pediatrician, and after a thorough examination and some test it was confirmed that Annabelle does indeed have a urinary tract infection. This is UTI # 5 - not cool! Thankfully she is in pretty good spirits but her temp continued to rise and she threw up again. She's sleeping now - in her own bedroom I'd like to add :-) We moved her over the weekend and she slept there for the first time last night - yeah. It's so great to be blogging with the lights on. I am usually sitting in the dark in the corner praying she won't wake up. We are hopeful that the medicine will kick in by tomorrow and she will be feeling much better soon.

Speaking of tomorrow - ugh - we have Spina Bifida Clinic at the hospital. We will be meeting with Annabelle's Neurosurgeon which I am happy to report we haven't seen since her last surgery in February and then meeting with her Urologist. We have LOTS to talk about with the Urologist and frankly, he's not much of a talker. I am a bit nervous about tomorrow. I need to work on my list of questions and talking points or I know the conversation will be very one sided and I'm NOT a fan of that, especially when we are talking about my daughter.

Here are the results from Annabelle's VCUG and Renal Ultrasound on July 7th. I am taking this directly from the Radiologist's report so it's quite technical but I want to document it as it is written plus I think it might be helpful to read for anyone who's child has a similar condition.

Just to clarify since I received a few question previously, this is kidney reflux not acid reflux,although Annabelle has acid reflux as well. Click here or here if you would like to read a bit more about Vesicourteral Reflux.

Comparison:

VCUG on 8/6/2009 and VCUG on 12/1/2009

Findings:

Scout film shows spinal dysraphism with right VP Shunt. Following placement of a latex-free catheter, Conray 43 was instilled into the bladder.

Small elongated bladder contour is again seen. There was reflux up the left ureter during bladder filling, to the left kidney. Mild hydronephrosis and calyceal blunting is seen. There was some leakage of contrast into the urethra at about 25 cc, and the contrast was stopped at this point. Total fluoroscopy time was 4.2 minutes.

Impression:

New left Grade III reflux
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My heart just sank when I read grade III. Reflux is graded from 1 - 5 with 5 being the worst. They will often recommend surgery for grades 4 and 5 so a grade 3 is pretty bad in our eyes. We are unsure what the Urologist is going to recommend but we are hoping it will be a low does of antibiotics, possibly medication to relax her bladder and then a cathing routine to help empty her bladder. I write this as if it's no big deal, but believe me to us it is a total big deal, but we are in NO way going to allow further damage to Annabelle's internal organs. They must be protected at all costs and if this is what we must do to help reverse what is happening and help heal her bladder and kidney's than this is what we will do.

Here are the results from the renal ultra sound taken the same day, July 7th.

Comparison: 3/2/2010

Findings: The right kidney measures 5.2. cm in length with mild right hydronephrosis. The left kidney measures 6.4 cm in length with moderate to advanced left hydronephrosis. This appears worse since the last study. No renal stone, mass or other abnormality is noted.

The imaged pancreas and aorta unremarkable. The urinary bladder is thickwalled.

Impression:

1. Moderate to advanced left hydronephrosis, appearing worse since the last study on 3/2/2010

2. Minimal right hydronephrosis

3. Thickwalled urinary bladder. Rule out cystitis.

Click here if you would like to read more about hydronephrosis

What more can I say, pretty disappointing, but this won't break me - NO WAY!! Our little girl is strong and she needs strong parents. So we will continue to fight the good fight to help make her feel better. We love Annabelle SO MUCH that none of this matters in the big picture. We are SO VERY blessed to have her and we thank the Lord every day for her. She and her brothers truly are our gifts from God.

I will update soon how clinic goes tomorrow. If anyone actually made it to the bottom of this super long post (sorry), thank you for taking the time, thank you for caring and thank you for being part of our lives.

8 comments:

  1. I am made it and I will say a special prayer tomorrow as you talk to the Dr,s.
    Love to you all,
    Greta

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  2. Nicole, you are a warrior Mom! You are so strong and continue to do the best for Annabelle! Pat yourself on the back you are doing such a great job! Hugs to you! Cindy Fojo

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  3. That's so disappointing :( I hope Annabelle feels better soon.
    But you have the right attitude. Go MOM!

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  4. Nicole,
    I'm reading this and feeling butterflies in my stomach bc Madison is just coming off of her 1st UTI, and we are starting all the uro testing in a few weeks. I know how quickly things can change, and I pray that we will have the strength and courage to adapt when the changes come. Thank you for sharing your sweet Annabelle w/ us...I will continue to keep her in my prayeres.
    Hang in there, Mama! You're not alone! Hugs.

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  5. Nic, if that is a long post, then what are mine?? lol!

    I'm truly sorry to hearing the update and news. Good for you for going in with a whole bunch of questions for the Urologist. Knowledge is everything.

    I know this type of post is harder than the cute ones... do whatever makes you feel ok. I find it hard, but also helpful - to others and myself. You can just post the cute one right after it! =)

    Thinking of you -
    xoxo

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  6. so so sorry for the news, good for you going in with lots of questions. love and prayers for you and your family.
    janine

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  7. Greta, Cindy, Amanda,Selina, Chris & Janine -

    THANK YOU, THANK YOU for your kind words of support. It means so much to hear from you guys and know that I am not alone in this. I felt your love and support today at the Dr.'s and it gave me the strength I needed.

    What a blessed girl I am! I will update a bit later what the plan of action is.

    much love -
    Nicole

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  8. Hi mama! Thanks for the update. You guys are such amazing parents for your little angel. I'm hoping the visit went well and you got all your questions answered.
    xoxo

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