12.13.2011

Another Bump in the Road


(the girls and Jack and I grabbed from Fro Yo today while we waited on Lucy's special medicine for her tummy)

Just as I was preparing my Make a Wish revealment post yesterday, Erik and I made the decision to take Lucy back to St. Jude for some ongoing stomach issues she has been having.  I won't get into details, but just know that she has suffered from lots of intense stomach cramps and diarrhea.  Another thing that has been concerning to us is the amount of weight she has lost.  We knew that once she stopped receiving TPN, there could potentially be some weight loss.  However, she has lost almost 4 pounds since she began eating on her own.  So, all this combined, I knew we would all rest better if we made a visit to our favorite doctor in the world. 

Lucy had to have an IV started once we got there.  That was a miserable experience to say the least.  She cried so much after that trauma that she fell asleep in my arms until we got to see Dr. W.  Thankfully her electrolytes and vitals all looked great.  Her ANC, platelets and WBC were all great, too.  She did receive fluids before we left, just to be on the safe side.  We didn't leave the hospital until after 9pm. 

While we were there we discussed the weight loss issue and the team all agreed that she had fallen below the threshold of acceptable weight loss.  Her poor little body looks so pitiful.  Lucy is also not making great strides in PT either.  We all feel as if that is a result of her not having enough caloric intake throughout the day.  She is just too weak and her muscles don't have the fuel they need to grow.  So...that being said we have some major hurdles to clear still ahead of us. 

I would be remiss if I did not add that there was talk of a feeding tube.  The very thought makes me sick to my stomach, but I know that something has to happen.  Something has got to change. 

This morning the NP called and said that Lucy did test positive for C-Diff.  I can tell you that I have never been so happy to hear that my child had an intestinal disease.  You can only imagine the fear that I entered the hospital with yesterday.  (Stomach cramping was the major symptom that led us to her initial diagnosis.  I was a wreck all afternoon.)  While this is a nasty little bugger we have to deal with, it gives us some hope that within 48 hours she will begin to have relief from the diarrhea and stomach cramps.  Once those subside we hope she will start to eat more.  At least what she does eat will stay in her body.   

So we have a game plan and we are going to watch her weight like a hawk.  If we don't see improvement in the very near future, we will be forced to consider the unfavorable options before us.  I know so many of you have poured your soul into praying for my little girl.  For that, I am forever grateful.  But if there are any prayers for her left, please ask God to grant her an appetite and the ability to fight this infection. 

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30 comments:

  1. I'll be praying that Lucy can eat and fight that nasty infection. I will also pray for you too!

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  2. poor little peanut!! Praying in MN!!

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  3. Been following along for several months now and never posted. Just wanted you to know you have a neighbor in NE Arkansas praying for Lucy and your whole family.

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  4. Lucy is in my prayers for a healthy tummy and soon!

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  5. We have a mutual friend and I've been praying for Lucy almost daily since the beginning (and never posted). On my knees again tonight on her behalf. May God continue to intervene and give Lucy strength and healing.

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  6. I haven't stopped praying for Lucy and I promise I won't stop praying for her.

    Interceding for Lucy often.

    Blessings,
    <><

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  7. Lucy is always in my prayers. Blessings, hugs, and lots of love from California.

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  8. As always Lucy is in my daily prayers

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  9. Continued prayers for Lucy!

    Blessings,

    Amy

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  10. Oh, I will keep your sweet baby in my prayers.

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  11. Sweet Kate,
    We will ALWAYS have more than enough prayers for your Lucy and your family. Please don't hesitate to ask. She is prayed for so frequently in our house.
    My prayer is that this bug will get out of her system quickly and that she will enjoy eating again.
    Merry Christmas
    paulaschaffin@gmail.com

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  12. I have been praying for Lucy and will continue to lift her up. I am going to the throne with this specific request right now. He is perfectly able to heal each bump in the road! Praying for you in Roanoke, AL! Lyn

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  13. Dear Lord, please heal little Lucy's precious body and give her a huge appetite. Let her be eating cookies, and ham and turkey, christmas casseroles by Christmas!! Please let this family be together at Christmas and healthy! And continue to give her rock-star mom the strength and faith to meet everyone's needs.
    Kate-We are still praying for you all here! Keep us posted on that sweet girl!

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  14. There is NEVER a cease in praying for Lucy. She is in my prayers daily as she is for countless others who are praying EVERY second, EVERY minute, EVERY hour and EVERY DAY for Lucy.

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  15. Hang in there Kate. My Macie and I will pray for her to fell better and start eating and gaining weight.

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  16. I don't comment often but my 2yo daughter and I pray for your 'Little Lucy' very often.

    Continuing to lift your sweet baby girl before the Great Physician.

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  17. I'm so sorry, Kate, that someone ignorantly expressed to you that your family was greedy and selfish for accepting the Make a Wish trip, implying that Lucy was not sick enough to deserve it. You're an extremely giving person, and Lucy is an extremely deserving child, as is any child who has gone through the challenges she has faced. I continue to be amazed and inspired by your strength and faith and by Lucy's brave fight. The love for Lucy and your family, as shown by you, and the St. Jude staff, and so many more speaks volumes about what matters in the world. Heartless comments may hurt, but they don't matter. Love matters, and so does the accompanying healing power of prayer. Prayers embrace your child every day, from all sorts of people who care about you and your family. That Lucy is hanging in there after all she's been through is something to truly celebrate, and it's wonderful Make a Wish understands that. Hope Lucy gains strength soon, and is able to eat more.

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  18. We (my family and I) pray for your sweet daughter every single day. Although I seldom ever comment your family is NEVER far my thoughts and always in our prayers! We will add this to our prayer for Lucy...for an appetite and to fight the infection.

    Love and prayers,
    Christina Gomez

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  19. Kate:
    I am praying for sweet Lucy, that her stomach will calm and that her apetite will increase. Love your family, and so glad you had a wonderful trip to Disney!! Go Lucy Go!!!

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  20. Lucy is in my prayers daily, as is the rest of your family. Stay strong. You have inspired me more than you will ever know. The Lord is working through you, and your faith is contagious.

    With Love!

    Lindsay

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  21. There are always prayers left :)

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  22. Kate,
    I read your blog regularly and hold you and your family in my thoughts always. My granddaughter has some chronic health conditions; they don't come anywhere near your Lucy's battle but they present their own struggles. My sweetie bug has a g-tube and it has been a lifesaver for us! She can take almost all of her medications through it, so there's no struggle with the horrible tasting liquids or difficult to swallow pills. It's a true blessing as it keeps her at a healthy weight and makes lifesaving meds manageable. Please don't let that option give you so much worry and stress!

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  23. MANY prayers still being said for Lucy!! You all are in my thoughts daily, and will continue to be!

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  24. My daughter had c-diff following hospitalization for meningitis. It took about 8 months for us to detect it, but once she got meds, she was WAY better! I am so glad they found something and can treat it! Get stronger LUCY!

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  25. We pray for Lucy all the time! Will continue to lift her up. Hopefully the doctors have given you a good strong PROBIOTIC! C.diff happens when all the good bacteria has been wiped out from antibiotics. Dear Jesus, please have mercy on this little girl and her family. Every cell of hers was fashioned for your glory and is under your control. Right her system, because you can! For Christ and His glory, Amen.

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  26. I work in a hospital and C.diff can be difficult to get rid of. Don't be afraid of the feeding tube. Sometimes they can do it just at night so she can have her freedom during the day. It will give her so much more energy. I'll be praying she doesn't have to have one but don't fear it if she needs it.

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  27. We are still praying for Lucy here in Philadelphia, Mississippi. I'm about to put my own two little girls down for their naps and we are going to pray for her together then :) Hang in there!!!!

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  28. I have been following your blog for a while. I saw the post about CDiff. Just wanted to say I have had that.....it is a nasty bugger like you said, but if they give her the right meds she will feel a MILLION times better. When I had it, I didn't want to eat anything, hurt all the time, was in the restroom all the time and lost 20 pounds. I hope and pray Lucy gets some relief soon.
    Katie

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  29. There are always prayers left for Lucy. God, please may your healing, protective hand be upon Lucy now. Please let her appetite return and increase and let her gain weight and thrive. Pour out your mercy, grace, and peace upon Lucy and her family. Especially give Kate and Eric strength, courage, and guidance. We ask for your radical and loving intervention in the lives of this sweet family.

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