Monday, June 7: Update 1

Today has already been a hard day. Claire is completely off the sedatives and she is miserable. She is posturing a lot more than she has before and it’s troubling us both.

Claire has a big 48 hours ahead of her as the doctors try to prep her for transfer to Baylor Children’s Home for rehab.

First Claire will have her arterial line moved from her femoral artery to under her arm. We’re doing this to avoid infection and also to get some of the cords off her legs.

Claire is also scheduled to get her g-button in tomorrow which will free her from the nose tubes. The surgery will take about an hour.

Because of how busy it will be for the next two days we ask that visitor flow be kept at a lower level. We will be in and out of the PICU while Claire goes through various procedures.

We will be meeting with a neurologist today also. I will post some more details later today once the avalanche of information abates.

Please keep us in your thoughts and prayers today. It’s goig to be a challenging one.

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42 thoughts on “Monday, June 7: Update 1”

  1. I am so sorry for all that your family is going through. I am praying for you all. Thanks for taking the time to write the updates for us. It helps us to know how to pray. Our pastor told us years ago when we faced devastating news with our young son, “Lean on Jesus. He can take it”. I hope you feel Jesus’s strength each and every moment.

  2. Praying for you all!! Believing for full recovery for all of you!! The kids in our church made cards and I will be mailing them out today!! Lots of kids are praying with their unfiltered faith!!
    Love you all!
    Aunt Gina
    PS as I was praying yesterday at church, I prayed that Claire would Declare the works that God has done and I realised that, Claire will De-Clare the Miracle!!! Thought it was cool! Hope you do, too!!

  3. You don’t know me, but I have been praying for your sweet family ever since I heard of your tragedy. Please feel God’s loving arms surrounding you today. He is there walking you through the darkness. Though you may not feel Him at times, he will never leave you. We have 11 children that are all storming heaven for you. Be strong and in the stillness of the night you will hear His voice.
    Shannon Smith
    Highlands Ranch, CO

  4. Still in our thoughts and prayers. I think sometimes in suffering we (at least I did) want to yell out, “Okay God, you’ve got my attention now what!” I think this is the what, some of it anyway. I found these words to be encouraging today as I read my devotional:

    “Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer. Share with God’s people who are in need…Rejoice with those who rejoice; mourn with those who mourn.”
    Romans 12:11-15

    Please know that as a family of God we stand behind you, lifting you all up. Hurting with you and praying that in this horrifying circumstance God will give you the patience as you wait for His answer. And to even make through the next five minutes of heartache. When you feel like you can’t pray, know we burn the midnight oil in your stead.

    Much Love,

    Juan, Favi, Malakai and Nehemiah Herrera from IBC

  5. Our Children’s House at Baylor is an excellent home away from home for Claire. I work at Baylor, and as an xray technologist, the radiology department goes there frequently to help with continued care. She will be in great hands there.
    Keep strong and have faith. God Bless.

  6. Thank you for sharing your journey through the last week! It cannot be easy and my heart aches for sweet Claire and your family! I have been thinking about Claire constantly and praying for her and your family since I heard about her last week from fellow MOPS friends (I was in Alpha MOPS at IBC and met Tiffany briefly at our first leadership dinner). Claire is absolutely beautiful in her pictures….I have NO DOUBT that she is just as beautiful on the inside! Please know that you are not alone and that MANY are praying for you and thinking about you daily!! May you feel God’s presence at this time!

  7. I have more info on Baylor our Childrens House if you want it. There are child life specialists there too that can help the girls! Claire will get very good care there too! Call me if you have any questions.

    Amy

  8. Your family continues to be in our thoughts! I hope blessings find you during the next trials! You have a whole bunch of people rooting for your family and Claire!

  9. Tiffany, it’s Molly Taylor again. I wanted to share with you that I did a child life intership at our children’s house and I was so pleased to hear that you all are headed there. I think you will love the staff and the tender care that you will receive. You will have a team of doctors and therapists and it is a very family centered place. The child life specialist should also be able to work with your older girls. I will pray for your transition there and for a good team to meet you at the door. Thinking and praying for you daily!!

  10. Our prayers are with you. Keep talking to Clarie whenever you can. The words and voice recognition are powerful. Having had a child in NICU before, I know first hand it makes a difference.

    Keep strong.

  11. Tyler & Tiffany-I met Sarah Saturday night when they returned from the hospital. Sarah was very kind to update me on the days progress. I am praying for Claire’s full recovery! I had planned on coming by tomorrow afternoon but will wait until a better time. Again, I am here if you need anything. Malisa

  12. From one of the readers comments, I know that you have a church family to lean on. Isn’t it reassuring during a time of great difficulty and trial to know that you have a large extended family in Christ? I don’t know how people get through difficulties without the Lord to lean on! Thank you for the continued updates on Claire and your family. Your family is constantly in my thoughts and prayers. One moment at a time is all that is required. As the song says, “Day by day, and with each passing moment, strength I find to meet my trials here.”

    In Christian Love ~ Vickie

  13. Tyler, when I saw you guys last Tues you stated; “This is the easy part, just waiting, the difficult time will be accessing her after she is warmed and awake but God will lead us down the path He would have us go”. Sweet family, HE is in the lead and your hearts are strong and prepared to care for Claire and continue to be united as a couple; to cling to Him and His promises and bind together as man and wife. I pray God’s angles continue to provide a hedge of protection around your family! Thank you for taking time to post daily information; it helps us pray specifics and allows us to be a part of your family!

  14. What kind of posturing is she exibiting?

    “abnormal posturing are decorticate posturing, with the arms flexed over the chest; decerebrate posturing, with the arms extended at the sides”

    Thanks,
    Michelle

    1. She is posturing with arms extended to the sides. While there is posturing it is mixed with a substantial amount of arm and leg movement. The posturing she is displaying right now does not give a full indication of injury extent.

  15. 1] concentrate on Claire
    2[ take care of yourselves and your family
    3] update us when you get a chance – we are all praying for you

  16. Tyler and Tiffany,
    This is Michelle’s best friend, Amy. I just wanted you to know we are praying for you. We have a prayer chain circulating at Compassion, people ask me about Claire often. Thanks for providing updates. My heart is heavy for you, know that we are praying for you and your family and love you.

  17. Tyler and Tiff,

    I have a couple questions for you. Is claire technically out of her coma? Is she responding to verbal commands or anything. From all the reading i’ve done the common procedure seems that a child is in PICU until they are out of a coma, and then they head to the peds in the hospital for many weeks.

    The second question is why are they taking the sedatives away when she has a tube down her throat…it seems that that would create a horrible feeling and reasons for the agitation or discomfort. It would seem to me that until the ventilator is removed they would keep her as comfortable as possible. I can only assume that her body can’t do it’s own breathing until she is “drug” free.

    1. [1] Claire is technically out of her medically induced coma/paralysis; however, she is not fully awake until she is weaned off the meds.

      [2] They are taking away the sedatives in conjunction with the extubation. In order to be extubated, Claire has to be off the sedatives. They are also trying to get an idea of how well she will do when she is extubated: in order to diagnose extubation success, they have been testing to see how well she will breathe on her own. This puts us inbetween being comfortable and on the vent and being comfortable and off the vent: she ends up being very uncomfortable.

  18. Your courage and strength are amazing!! Thank you so very much for taking the time to keep the rest of the world aware of the journey!! Don’t forget to nurture each other, and youself!! Claire needs you relaxed and present. These are the things I pray for, for all of you!! Be gentle to yourself and know that many many people are supporting you spiritually.
    Yvonne
    Raleigh NC

  19. You don’t know us, but every night my boys, Kyle (5) and Grady (3) pray for Claire. Our hearts go out to her and to your entire family. And thank you so much for letting us know how it is going. Your strength is to be marveled at (even when you don’t think so).

    Hang in there….so many are pulling for you.

    Tom, Brenda, Kyle & Grady Schaniel

  20. FROM THE LAS COLINAS MEDICAL CENTER EMERGENCY ROOM, WE WISH YOU ALL THE BEST. WE ARE WATCHING HER PROGRESS AND PRAYING FOR HER DAILY. GOD BLESS,

    JEREMY ROUNTREE

  21. Queridos Martins,
    we send you all of our love and prayers….we think about Claire every second …she has some difficult days ahead, and our heart is next to her… BE STRONG!!!!!
    TODO NUESTRO AMOR! Maria y Rodrigo

  22. We think and pray for Claire, you both, Autumn and Heidi so many times each day. Your updates are so appreciated. You express yourself in words so well. Your writing has such voice, even in such a difficult time. We will continue to pray along with you for an exceptional recovery.

  23. We have not stopped praying for you all since day one. My Husband and myself both continue to offer prayers and tell others about Claire so we can have as many folks as possible talking to God about this.

    Thank you for taking the time out to keep us in the loop!

  24. Our childrens house is a very good facility. I have many of my own kids I work with go there in the past. Please make sure to meet work a social worker so they van guide on programs to help your family with all the costs. If you need anymore information about those please let me know. I know about a majority.
    Praying for your family.
    Veronica Montes

  25. You don’t know me but I have been following your story since reading about it on a friend’s Facebook page. You are all in my thoughts and prayers. I am praying for Claire’s full recovery and that she make it through surgery well today.

    My 2 year old has a MIC-Key g-tube and my 6 month old will be getting one at the end of the month. Although we were facing other health issues in combination with the need for the g-tube, the tube itself was very hard for me to accept initially. We’ve had it for 2 months now and it really is so much easier than an NG tube–and the care is much easier than I thought. I hope you have the same experience. Also–check out http://www.buttonbuddies.com. They have been GREAT for acting as a dressing for the stoma site–much easier to use than gauze and medical tape and look much cuter, too.

  26. My son blew Claire a kiss after we prayed this morning.

    Sorry to hear about the difficulties that Claire is having today. We continue to pray for strength and healing for the whole family.

    I am glad to hear that the doctors are transferring her to Baylor Children’s House. After doing my own research and speaking with others who have children there, inpatient or outpatient, I have learned that it is a wonderful environment. They have excellent OT’s, PT’s and SLP’s that work with the children that come through. They also have several Christian Counselors/Psychologists that are not far from Baylor Children’s House if the families need to talk.

  27. Hi Tyler and Tiffany,

    Glenn and Ruth Rogers are friends of mine from church and they’ve been faithfully keeping me updated about Claire. I’m praying her and for you two. I pray Father’s peace and rest over you in this time and for His Sovereign hand on your lives. I’m believing for her healing and strength. 🙂

    Elsa Bachman (from Christ Church Kirkland)

  28. We don’t know each other. Your blog came across one of my home school email loops a few days ago and I’ve been keeping up with your famiy a few times each day. You’re little Claire reminds me so much of our little Jayden. Jayden will be 3 on Friday, the 11th and loves swimming in our pool with her water wings with our family almost every day. My thoughts are drawn to you and Claire and the rest of your family, several times throughout the day and I’m praying that God will bring healing and through it all, He will be glorified. Also praying for your total provision and strength to take you through this most challenging time. So glad to hear that God is surrounding you with a good support of friends and famiy. Thank you for the updates. We serve a mighty God who loves Claire even more that we can fathom and I trust that He will pull her through victoriously.

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