Tuesday, August 3: Update

I’m going to make this one short because both Tiffany and I need to get to bed.

We had another episode today that warranted calling emergency services. Claire is fine and sleeping well right now. It was almost identical to Sunday’s action. We looked at her feeds again and still feel she is getting too much volume. We’re going to back down her feeds tomorrow even more and make the rate a little slower. We are also going to introduce some real food into her diet. We hope these things settle her stomach so she can avoid the hardship on her little, 30 lb body.

Today’s activity wasn’t as emotionally shocking as Sunday’s but it was just as physically draining. Tiffany and I are starting to drag our feet and so we are going to focus on getting to bed before 10:30 PM the next several nights. Here’s hoping that works.

Thank you for your prayers and for continuing to follow Claire’s story. I’ll give a more thorough update tomorrow.

16 thoughts on “Tuesday, August 3: Update”

  1. Oh my heart breaks to hear that you had to go through this again. I’m so sorry. Thank God that she’s okay and that you were prepared to handle it. Praying for you guys and hope you’re able to get much rest tonight.

  2. I have been following this story from the very beginning. I cannot tell you how my heart goes out to you every day. I lift you up to our Lord and Savior! He will carry you. You two are doing a fabulous job. I am a nursing student and am also planning to be an advocate for the voice of the parent. Just following precious Claire has made me want to reach out and hold her and the both of you. We lost an entire family here in Parker this last weekend – you still have your beautiful family and I thank God for how much you have taught all of us through sharing your experience – even the deepest pain and sorrow of it all. I commend you as you walk in faith and obedience. Love will prevail! God bless all of you!!

  3. I am so so so very sorry!

    Another option you may consider on the feeding front until Claire’s gut heals a bit more is the GJ tube. It has to run a bit slower but the food bi passes the stomache so there is way less vomiting if any.

    Makenzie had a GJ tube for 2 years and it was the BEST thing we ever did for her. It did come with it own share of issues but those did not compare to the fear of constant vomit and aspiration. It is a simple easy proceedure that requires nothing more then the radiology department and a Mic-Key GJ button. We also used Neocate formula when she was J tube fed because it was elemental and easy for her to digest as well as hypoallergenic.

    Please let me know if I can help you an ANY way! This is a tough problem but one that many kids in our kids situation deal with!

    Tons of Hugs and Prayers
    Pam and Makenzie

    1. My son has a GJ tube due to reflux. We feed him overnight while he is laying down and we were so worried he would reflux during the night. The process of changing a g-button into a GJ button is very simple, but does require the use of xray. We have it done in “interventional radiology”

      I hope you get things figured out and are able to move on with Claire’s recovery 🙂

  4. I heard about Claire from one of your family members. I am a speech pathologist in Edmond, OK. My heart goes out to you both! I have been curious about whether you were instructed in venting Claire’s g-tube after meals and after periods of crying when she may be swallowing excessive amounts of air. This air can contribute significantly to reflux. Also, Claire’s body needs to be placed in an elevated position at all times!! I have some literature I can send you if you feel you need additional information. Please don’t hesitate to contact me.

  5. I will be praying that God guides you in making the best decision in regards to feeding Claire. I will also pray for peace at your house and much needed rest (all of this in addition to healing for Claire). Hang in there and know that people all over the US are lifting you and your family up in prayers.

  6. I am so sorry to hear that! Keep your heads up! God will give you strength! My family is still praying for Claire several times a day. We will pray specifically for a settled stomach and guidance on her feeding. We will also pray for more strength for you guys.

  7. I remember when we brought our son home they had him on four 300ml (or 10oz) feedings at a rate of 250. Needless to say we were going through the same thing you were with Claire. We dropped them down to three 8oz feedings a day and he thrived and his vomitting cut down dramatically. We had also taken our son to a chiropractor as suggested by another mommy whose son had drowned and the vomitting quit completely. Now our son is on a full blown diet of blended food and the only time he gives back his food is when he is sick, which we are thankful has only been once. You guys are doing a fabulous job of doing what you feel is right for your daughter. Thats all we as parents can do for our children and God will continue to guide you.

    I pray today is uneventful but full of blessings.

  8. Bless all of your hearts. Please know that my husband and I are praying for all of you daily. I look forward to your updates every morning so we can pray specifically each evening. Please know you are in our hearts.

  9. Oh, how hard! On Claire, and on you. It sounds like it was a little easier to handle this time, but today’s prayer is that a real solution presents itself very soon so she doesn’t have to go through this again. Glad you got to bed earlier, and hope that you slept well–and that Claire slept well. Many blessings on all of you in this struggle and journey. Love, Dodie

  10. Tyler and Tiffany:

    We hope you had a good night last night, and that Claire had a good nights’ sleep. We pray for continued improvement for her, and for strength for both of you, as you care for her.

    Praying for You,
    Ken & Jana Kirkpatrick
    216 Horse Ranch Road
    Jesup, GA 31545

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