July 7, 2010

VCUG and Renal Ultrasound today

Off to the hospital we went bright and early this morning to do "the dreaded tests". Yes, I call them the dreaded tests. No they aren't horrible, but they aren't much fun either. Annabelle had to have these same tests 6 months ago and although the test itself was really horrible - really it was. It was filled with lots of crying and unnecessary drama due to what seemed like an inexperienced technician and some strict rules that I didn't know how to protest at the time, but the results were good - no reflux!

Well, this time we had a much better nurse and technician and I was armed with knowledge and confidence so the test itself went SO much better. I asked that they not strap her arms down (at least at the beginning) and asked them to trust me that she wouldn't protest too much during the first part of the exam. Annabelle of course didn't disappoint. She was so sweet and happy and as social as always. Due to her paralysis and lack of feeling from her waist down it wasn't really much of an issue for her when they cathed her. Her problem comes when her arms need to to be held/strapped up above her head . I think it's probably uncomfortable for her due to the tightness she has in her shoulders and neck and probably a bit scary as well. Thankfully, this was only the last part of the test and I was able to be with her while wearing my big lead apron.

So, now the bad part, yep, there's a bad part. The VCUG showed that Annabelle has developed reflux. Obviously, this was very disappointing. I KNOW it's common for people with Spina Bifida to develop this, but honestly, knowing this doesn't make the diagnosis any easier to accept. At this point we don't know the severity of the reflux or the result of the renal ultra sound but should have those results in the next few days. We are scheduled to meet with the urologist early next week to discuss the next steps.

So, that's the latest. There are a few more "issues" going on like eating or actually not eating, which is resulting in her lack of weight gain. We are also struggling a lot with gagging and vomiting when she does eat which of course is also contributing to her lack of weight gain - ugh!

Yep, I'm frustrated and I'm sad right now. Sadly, I have been struggling with this for awhile now but honestly, I find it much easier to just post cute pictures of Annabelle than to share what else is really happening over here. I know we will work through this and my frustration will subside but for now this is where I'm at.

More cute pictures to come - as I said that always makes me happy! Thanks for listening and thanks for caring it really does mean a lot.

Nicole

11 comments:

  1. So sorry to hear that the results of the test were not what you were hoping for. I'm sorry, but maybe I missed this, but is it acid reflux or reflux in her kidneys? Just curious.
    As always you and Annabelle are in our thoughts. My love, Andrea

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  2. Nicole...

    Yeah. I like the photos of sweet Annabelle, too. She is absolutely adorable. But these tough posts are important, too. It helps me know what you're going through---even though it is difficult. Also, know that you aren't alone. When Esther-Faith was younger, she had reflux, too. We started CIC and the reflux reversed. She doesn't have it now and she is even learning to self-cath. Also know that it doesn't always turn out to be "good news." But there are lots of SB moms and families who will step up and walk alongside you when the going gets tough. You are such a strong person... to stand up for what was best for your daughter throughout the testing. I admire you.

    And I can't WAIT to see some more sweet photos!

    Karin.
    (from the HennHouse)

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  3. I'm so sorry things aren't going well right now...We are about to go through all of the testing again too..and I'm dreading it. Looking forward to returning to CHOP, but dreading all that comes with it. I hope you get some good new soon...keep positive and stay strong! hugs.

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  4. I'm so sorry Nicole - it's just unfair, and tough to hear, regardless of how more common it is for us. Keep us posted on what her treatment will be (are you guys cathing? Is it high pressure that's contributing, or something mechanical like a valve/sphincter?) The bladder and bowels have really been our biggest SB hurdle, even with cathing since birth. I summed up my notes on reflux from the conference last week on the conference thread on BC, in case any of that info helps. Please let me know if there is anything I can help with, and we are praying for this to reverse.

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  5. Hugs for you!

    We all go through the struggles and the blocking out. It's okay to let that out! No complaints about the cute pictures either though. ;)

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  6. I'm sorry you are having a tough time, Nicole. I have to tell you that I was shocked to read that they strap her arms down!! Anna has had this procedure many times and her sisters each had it once and their arms were never strapped down.

    It is interesting that Annabelle is gagging - my Anna did the same thing at about the same age Annabelle is right now. She did outgrow it but her gaining weight has been an issue.

    I don't know if this is of any comfort or not but you are at a tough stage right now. I suppose every stage is tough but you will get thru this. Anna is a superstar during her kidney procedures now. She watches a DVD and doesn't cry.

    Hang in there. I'm keeping my fingers crossed that her reflux reverses.

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  7. First of all, please know that YOU ARE NOT ALONE!!! As I was reading I knew all too well what you are feeling-I felt the same way when Nate was diagnosed. (Side note-why in the WORLD do they need to strap her arms down?? That's never happened with Nate and I just can't understand why it would even be necessary-good for you for advocating for your little girl and going in prepared for battle!) It's possible that the reflux will reverse-I've heard of this happening before on several different occasions. Each time we go in for a VCUG we hope to hear that it has reversed-which has not been the case as of yet. But we are still hopeful. Just try to take one day at a time. I really love that quote "don't let your fears of tomorrow steal your joys of today". It helps me remember to be thankful for all the wonderful and positive things about Nate and not dwell on the negative. Hang in there! Hugs!!!

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  8. Oh Nicole, I'm so sorry. I hope you start feeling better. It's so hard receiving the bad news. Just remember, this too shall pass. Chin up. Annabelle is so beautiful and lucky to have you. You guys are in my prayers. I hope the 'treatment' goes smoothly and is successful.

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  9. Grammy and GrampyJuly 8, 2010 at 8:17 AM

    Oh Sweetie, I'm so sorry about the results, I Love You all so much.

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  10. I'm sorry you didn't get good news with the ultrasound. But she sounds like a trooper. I know we all have good days and bad days. But you aren't alone on those bad days!

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  11. Thank you for sharing. I miss you guys so much and these posts where you talk about what's going on make me feel more connected to you...selfish of me much? :)
    Of course keep the cute photos coming....
    xoxxo

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