July 15, 2010

The Plan

So, we had Spina Bifida Clinic at the hospital on Tuesday afternoon and the meeting with the Urologist went better than expected - better is an odd description, but it's all I could come up with right now. We came prepared to get answers and create a plan of action with the Urologist. Thankfully, that is what happened. He was more patient and less condescending (sad, I know) than he has been in the past. Because I had done SO much research and gotten some great info. from my friend Liz (thank you!) I came with focused questions and a good base of understanding. This all seemed to help very much.

So, here's the plan:
  • Annabelle will start taking a low does of Septra (an antibiotic) everyday to help ward off any future UTI's
  • Annabelle will start taking Ditropan 3 times per day. Ditropan reduces muscle spasms of the bladder and urinary tract. It is used to treat symptoms of overactive bladder, such as frequent or urgent urination, incontinence (urine leakage), and increased night-time urination. BTW - it tastes HORRIBLE so I'm guessing I will be battling her locked lips each day :-(
  • Lastly, we will start catheterizing Annabelle 4 times per day. We will be doing training at the hospital on Tuesday, July 27.
We ask that you please pray for us as we (mostly me) gets used to this new routine. Life over here can be pretty crazy having 3 little ones and now adding in lots more medicine and cathing my sweet Annabelle. It's overwhelming for me to say the least! Branden too, but he will be a work for most of it.

We will repeat the VCUG and renal ultra sound in 3 months to see if all of this has helped reduce her kidney reflux and take some pressure of of her bladder. We feel that staying positive and having a firm belief that we WILL see a difference come October is really all we can do right now. We ask that you please stay positive with us.

Moms who are currently doing this and have other kids please share with me how you actually get it done. I am very worried how I will focus on cathing when I have a 3 & 5 year old running around my house. How do I do it when it falls right in the middle of preschool & Kindergarten pick up? What happens if I need to cath and we are at the park or one of the many, many other places I am each week with my kids? Please just help ease my mind a bit - it's still spinning.

I have been reflecting on this quote a lot this week :
If God brought you to it, He will bring
you through it

9 comments:

  1. Here is another quote" "I can do all things through Christ who gives me strength." Philippians 4:13
    You can and will do it, Nicole. I don't know how, but how have you done any of it so far? You've done it because you love Annabelle and you are her Mommy and you will do anything for her and your boys. Mothers are asked to do so much.
    You will all be in my daily prayers.
    Much love from,
    Greta

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  2. Great quote Nicole. Continued thoughts and prayers for you. I hope you get some encouraging answers from some others that have been through this as well. Much love.

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  3. We have the cherry flavored septra and Emily loves it. She gets ditro in the AM (after her vitamin), at 1:30, then at bed after the septra. She's never been bothered by the taste.

    Our first cath is when she wakes up, then every 3/3.5 hours after. Then one at night while she sleeps, about 11pm to help bridge the overnight. We cath about 5-6x's a day. If this time frame falls during a nap, therapy, dr, zoo, grocery etc, I cath right before I leave to buy myself an extra 3 hours. This might mean an extra cath but it helps buy time. If we are out for longer times, I always cath in the car (I'm a bit of a germ hater). But we only have 1 car seat in so I have room in the back seat. If you have an SUV/truck you can do it in the way back. I have a pad for underneath, and I keep supplies in the diaper bag and cath right into a diaper. I usually pull away from others for privacy.

    Honestly after a small amount of time it will be effortless and you'll work it into everything - you'll be able to do it quickly, with limited light, while singing songs, and it will just feel like a regular part of your routine. Honestly I'm not even bothered by it anymore.

    Heads up that the ditro causes constipation :( It's been an ongoing battle for us, one I still haven't gotten down despite increasing the miralax, giving her lots of greens/natural foods/minimal sugar, etc. Other side effects she has is dry mouth, and overheating. We make sure she always has water an a cool place to be.

    It's a bummer you have to do this but much like the other sb things, you'll work it in and it will just become part of your daily life. Let me know if you want to talk or anything. We're keeping Annabelle in our prayers that this fixes the reflux!!!

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  4. I won't lie, it will be overwhelming - at first. But it will get better, until one day you realize that it is routine, and you'll be the one giving advice to other moms.

    Our uro said it was better to cath more often than not enough. So like Liz I'll cath before we go out, even if it's not time yet. I have a kit in my diaper bag (it's an old makeup bag) with catheters, lube packets, a little tube of baby wash, hand sanitizer and wipes. It fits right into the diaper bag.

    I also have a digital watch that I set an alarm to go off every 4 hours during the day so that I have an alarm to remind me when it's time. Becuase mommy brain gets in the way sometimes.

    I have cathed all over the place. I DO NOT let cathing keep me in the house. I have supplies kept at both grandparents as well.
    You can do this!

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  5. Grammy and GrampyJuly 16, 2010 at 11:14 AM

    I'm so sorry this is all so overwhelming right now but you are so strong and such a GREAT Mom I know will be an expert at it in no time. As a Mom "you do what ya gotta do" for our kids.
    I Love You!

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  6. you are great and brave mother. i know you and your hubby will find the answers that you need. love and prayers.
    janine

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  7. Everything souds overwhelming, but you'll do it better than you thing. We'll keep you all in our thoughts.

    Daniella

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  8. Hi Nicole, Yesterday I just read your latest post about Annabelle (I'm following your blog--I knew your blog by googling "Dr. Javahery," who is also my daughter's doc), and my prayers were with your family. Today I went to La Harba Children's Museum, and what a surprise to see Ben's picture on the brochure! (I read your blog about it but forget) His smile is so beautiful that I know his parents must be very amazing to raise such wonderful kids and Annabelle is very blessed to have you by her side. I want to share with you a song called "God Will Make A Way" by Don Moen: (http://www.youtube.com/watch?v=1zo3fJYtS-o)

    God will make a way,
    Where there seems to be no way.
    He works in ways we cannot see,
    He will make a way for me.
    He will be my guide,
    Hold me closely to His side.
    With love and strength,
    For each new day,
    He will make a way,
    He will make a way.
    By a roadway in the wilderness,
    He'll lead me.
    And rivers in the desert will I see.
    Heaven and earth will fade,
    But His Word will still remain,
    He will do something new today.

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  9. Thanks for the update. I know you'll figure it out and find a rythym with the new routine. Sending you peaceful and hopeful thoughts.
    xoxo

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