Wednesday, June 9: Update

I’ve lost all track of time and it has no meaning for me right now. Tiffany and I were trying to remember what day it is and are baffled that it’s already Wednesday. My apologies that our space/time vertigo keeps you waiting for long-overdue updates.

The most important piece of information is that Claire is still breathing on her own since being extubated today at 10:00 AM CDT. Her vitals have been strong today. She has a strong cough and is swallowing well. Everything was looking so good that the respiratory therapists moved the ventilator out of her room only two hours after extubation.

Claire did a great job of self-modulating her heart rate and blood pressure for most of today. As the evening clouds moved into the metroplex, so did Claire’s agitation. Her heart rate started spiking around 4:30 PM CDT and posturing followed suit. Today’s doctor was concerned that she may be experiencing small, undetected seizures. After an hour and half set up and EEG test, we determined that Claire is not having seizures. The test did, however, indicate subnormal brain activity consistent with a global brain injury. This is not new information. We added a sister medication to the adavan to help settle Claire’s agitation and it has been working very well.

Claire was awake for nearly two hours after being extubated. Both Tiffany and I felt she was locking eyes with us. My resolve crumbled and emotions tumbled forth when while holding her gaze she seemed to try to voice some words. She is so hoarse from the ventilator all she could do was squeak. Throughout the day she’d continue to try to make noise as she attempted to cry. It was very sad and brought tears to our eyes every time.

After 10 days of waiting, Autumn and Heidi finally got to see their baby sister in the PICU. It was a short, seven minute visit, but it made them very happy. It made us happy to see them with Claire. I learned later that Heidi internalized seeing her sister much more than she let on when she cried in my arms, “I just want it to be like it was in the past.” She was happy to see her sister, but she is scared of what will come. So am I. We still don’t know how capable Claire will be. We will learn that in the coming weeks, months and years; however, the uncertainty is wearing on our entire family. Autumn and Heidi have both confessed that they want Claire to be the same. I can’t tell them that she will. My heart breaks for them and for me and Tiffany.

We continue to try to avoid getting too much in our heads about what the future holds. We are trying to take each day, one at a time. But the lack of sleep, exhaustion and roller coaster emotions are taking their toll. Please pray we all sleep well tonight and that Claire continues to progress. I have some updates about Baylor Children’s House that I will include in tomorrow’s posts.

Thank you again for all your love and support.

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61 thoughts on “Wednesday, June 9: Update”

  1. Praise You Lord for breathing into Claire’s lungs. Thank you for watching over this family. I pray for continued strength for Claire’s family.

    I have been following your blog through a friend on facebook. My heart aches for you and continues to uplift you all in prayers throughout the day. Thank you for taking the time to update us.

  2. I’m so glad to hear that Claire has her tube removed and she is breathing on her own. As a mother of two young sons, my heart is just aching for you, and I think of your family often. If that was either of my boys in the hospital after such a tragic accident, having to explain to my other child things that I just couldn’t with all the uncertainty, I simply can’t wrap my head around how I would deal with all that, aside from just dealing one day, one moment at a time. You are carrying the weight of the universe on your shoulders, and I hope and pray for your continued ability to hold tight together as a family, and that Claire will as you said continue to progress. I think how much I would love for her to talk, and to be able to go to school, eat an ice cream, and tears well up in my eyes thinking about what your new “normal” will be. How one moment she was a vibrant, happy little girl, and in another she is fighting to live. Thank God she is alive. and now breathing on her own. She seems like a little fighter, and once she’s stabilized enough, I hope she can comprehend and understand, maybe then she can find out how she got to where she is now, and continue to adjust to her new life. I’m just so happy she has a life to live, and she is so lucky to have such a wonderful family to stand by her side. With such awesome parents and wonderful sisters, she’s gonna be alright you guys. Just know there is a mom out here in South Dakota that’s heard your story and follows it every day, and prays for your daughter to get well, and have all the happiness she deserves. Good luck to you all.

    1. That was a beautiful post. What you wrote really resonates with me. In so many ways what you wrote is exactly what I (Tiffany) am experiencing. Thank you for that post. In some way it really comforts me there are people trying to walk in my shoes. Thank you.

  3. I have never met you all, but I learned about Claire from a Facebook posting by Tisha G last week. I have been praying daily for your daughter. I worked at Baylor Our Children’s House in Grapevine for 5 years, and I know firsthand that OCH Dallas is wonderful. The manager in Dallas, Dana, is truly amazing. She was my boss for 4 years. I also have a friend, Amanda E., that is a nurse there on the weekends-she is so kind and compassionate! The physical, occupational, and speech therapists are all good too. I pray that Claire continues to improve, and that she will be able to start her rehabilitation soon.

  4. Thank you so much for taking the time to keep all of us updated! I’m so glad Claire is breathing on her own! You guys truly seem like an AMAZING family and I’m so sorry you have to go through this terrible tragedy. I know you don’t know me (I’m a friend of the King family) but I was wondering if we can send gifts to the hospital? I would really like to send Claire something!

    Kristen

  5. This is the post that I have been waiting for what we all have been waiting for. It has brought tears to my eyes. This is the best news I have heard in I may say my life. She has not left.my mind even for a second in the past week. I look forward to meeting Claire and the rest of your family when things calm down. I am happy to hear that the girls.got to c their sister. That must have been great for them… congratulations guys may the coming days. Bring more good news.
    Kristen

  6. So, so happy the girls got to see their sister. We are praying for all of y’all every day! Hugs and love always

  7. I had a friend who posted your site on facebook. After reading the first one, I couldn’t stop. You are wise to write comments to keep your mind going. Writing thoughts, emotions, down helps one process better what is happening around them. I have two children and cannot even imagine the emotional roller coaster you, Tiffany, Heidi, and Autumn are on. I will be praying that God will continue to give you strength, and presence of mind, to take one day at a time. That is a very difficult thing to do. I will also pray for a miracle for little Claire. God will hear all of the prayers that are being lifted up for you, and your family. Keep the faith strong!!! We will also pray that he lays his healing hands on your beautiful daughter; as well as lay healing hands on your injured hearts.

  8. Tyler and Tiffany-
    It is so hard to find the words to express to you. My heart aches for you two, claire, autumn, and heidi. I will continue to pray for healing in Claire, and strength for all of you. You all are my family and I wish there was more that I could do. Please rest and take care of yourselves. You have already showed strength beyond my comprehension. I send this with love to all of you.
    Missy

  9. Geesh, I can’t recall that last time i’ve been so emotional…You guys never leave my thoughts and prayers.

    I don’t know why what has happened to you makes me so paranoid about my own kids. Everything they attempt to do, I see as a potential danger.

    I’m so glad that Claire has been able to get rid of some of those tubes…I do want to know one thing. When can you hold your baby girl?

    I am thrilled to hear that there are no signs of seizures, and that she is breathing, coughing, swallowing, looking at you, and squeaking…How sweet!

  10. It was a blessing to hear that Claire was able to be rid of the tubes. To hear her voice, to be together as a family, small and big blessings. I, we continue to pray all through the day for Claire you and Tiffany the girls and your parents. In God’s Love

  11. I’m so thankful you’re founded in the Lord through all of this — it brings peace to our praying hearts knowing there is an open channel for Him to administer strength, hope, wisdom… when thinking of you guys I’m often reminded of the song that says “there were times — I know it — my feet were nigh slipping — and only by grace did I stand… and though trials be grievous, there’s no shame in weeping… still I did not let go of His hand…”

    Thank you for continuing your detailed posts… not sure if it’s exhausting or therapeutic, or both, but it’s very much appreciated.

    In prayer with you…

  12. I am so glad she is maintaining on her own, that is huge! I am also so glad her sisters got to see her! Your family continues to be in my thoughts and prayers!

  13. Praying for your sweet Claire daily! I am so thankful she is breathing on her own. My heart breaks for you guys when I think what you are living through everyday. I will continue to pray for peace for all five of you and that you will be able to rest even in the middle of this storm.
    I am sure that you are already aware of the Child Life Specialist at he hospital, but just in case, they could be a very important piece to helping your big girls cope with all that is going on. They do not only help with the patients at the hospital, they serve the entire family.

    Lord, give this family the miracle that we are all praying for!!

  14. I am glad Claire is breathing on her own…. Step by step one each time… She’ll do it.
    I’m praying for all have a wounderfull day today and the caming days.
    Love
    Bia and Family.

  15. I am so proud of Claire for making so much incredible progress. Praise the Lord, She’s trying to to talk to you!!!It is so good that Heidi and Autumn got to be with her. I know the reality was hard for them but also necessary.I continue to pray for all of you every day.I miss you all.
    Love,Marnie

  16. You don’t know me, but my name is Vickie Smith. I live in Atlanta, GA. I read a prayer request for your daughter on another blog that I follow. I wanted to let you know that your family is in our prayers. I will continue to pray for Claire’s healing and also for strength for your family as you face the future.

    My son, Will, suffered a brain injury at 9 mths of age when he babysitter violently shook him. We were in the PICU for weeks and then residential rehab for over a month. It’s been a long road, but I want to encourage you to stay strong. Claire will draw strength from you and your love for her. My son is getting better every single day. It’s been 3 years and he’s doing things today that I wasn’t sure that I’d ever be able to witness. He rides his bicylce, he climbs the ladder to his playhouse, he jumps, he feeds himself w/ a fork. He’s gained 4 new words in the past month. He tried to put a sentence together this week…and I could understand it. Every brain injury is different, but the one thing that is the same with every family is the God we serve. He can and does still perform miracles. I’ve seen it in our lives on many occasions. Time is your best friend. You will learn a lot of patience. Before it’s all over, your daughter will teach you things that you would have never learned from anyone else. I know that she’s strong. She will be brave and she will make her way back to you just like my son did. I’m sure of it.

    Keep your eyes upon Jesus. He will provide your every need and he’ll carry you on the upcoming days when you think you just can’t put one foot in front of the other anymore.

    Prayers from GA!
    Vickie Smith

  17. Heavenly Father, I lift up to you Claire, her mother, father, and two sisters. Lord I thank you that you’ve made them a family. That you knit them so closely together. That you’ve given them love and support for one another. Heavenly Father I ask that you continue to knit them tightly together, that you hold them up when they feel week. That you be their mind when it seems like they don’t know what to do. Heavenly Father thank you for their friends and family that are helping them so much right now. Keep them strong, guide them and protect them. Help them to always feel appreicated for the love they are showing your children. Thank you Lord. Thank you for your many blessings, and thank you for the miracle of Claires life. Thank you for the many things you are going to teach others through her. Thank you Lord for her ULTIMATE HEALING which we know come through YOU. In Jesus precious name I pray. Amen.

    Please know I’m sending up prayers like this every single day and several times a day for your family. God bless and hold you all

  18. I am so glad to hear that your precious little girl Claire is breathing on her own. What a wonderful birthday gift. I hope that you guys get a little rest. I bet that Autumn and Heidi were really happy to see their sister. May God continue to heal her and bring you all strength in the coming days. I love you.

  19. Dear Tyler and Tiffany
    I have been following Claire’s journey and my heart goes out to her, you and the rest of your family. This is an incredibly tough time, I promise you it doesn’t get any worse, I know – I’ve been there (but it will get better.) As a parent of a near drowner myself I feel what you are going through and I pray for Claire’s recovery. I am so happy to hear that she is breathing easily and the fact that she is able to manage her secretions by herself is such a positive sign for her rehabilitation. Keep positive, have hope and stay strong.
    Wendy

  20. Dear Tyler, Tiffany and girls:

    I believe I told you in my first post to Claires’ page that I am Cheryl Prices’ sister. We learned of your situation through an e-mail from Cheryl. My sister and brother-in-law have been close friends with Don and Joanne for years.

    I was heart broken as I read your post. Despite my emotions, however, I know that our wonderful Lord is able to heal your precious Claire. I pray that He will keep you both strong in your faith and that Claire will be completely healed from this tragic accident she had. I also pray for God to give you the strength to comfort your daughters and help them to trust in Jesus for Claires’ healing. I am praying, praying for Claires’ complete restoration to health.

    In His Love, Ken & Jana Kirkpatrick

  21. Thinking of you guys OFTEN and praying for your hearts. Thanking Jesus that he is faithful to draw near and give you what you need for each moment.
    Grace and Peace,
    Amy (Moritz) Stroup

  22. we have never met, but I heard about your daughter through facebook. I have 4 children. As a mom, my heart cries for you. My heart is crying to God that He will heal your precious baby. Try to stay strong. Know that people you have never even met are praying for you.

  23. I was thinking of you last night as I tried to get to sleep and was thinking how hard I’m sure it is for you guys to rest. I hope that you were able to clear your heads enough to rest peaceful last night to give you energy for the day today.
    Praise the Lord that Claire came off the venilator well. She’s a little fighter for sure! 🙂 I pray that she will be able to speak to you soon and her progress will continue.
    Many prayers!

    Keeley

  24. I’m so happy that he is now breathing on her own! It’s just another little step to her recovery. Although we can’t be certain about the future and know that there is some brain damage, I keep on praying and thinking that it is just minor and that with time, therapy and the love of everyone, she’ll be fine. Love to all of you.

  25. That is good news. I am glad that Claire has that plastic tub out of her mouth. I am sure she is also. I pray that she will be able to speak to you soon. How precious that she is trying to communicate. That sounds like a great sign.
    I am glad that Tiffany felt loved yesterday. May she continue to hold on to that. I am lifting you all before the Lord daily as a many others. Thanks for the updates. Tyler, you are an excellent writer.
    Love you both.
    Michelle

  26. Congratulations!
    Thank you for keeping us all posted as our thoughts and prayers are with your family. Speech therapists can do amazing things very quickly. It is fantastic that she wants to talk to you. That strong urge will push her recovery along so much quicker.

    “I shall never leave thee nor forsake thee” thus saith the Lord

  27. Just one step closer,,, YAY!!!! I’m so happy for all of you. As you said you have to take it one day at a time. Baby steps, keeping the faith, prayers, positive outlook. You all have this and you can do this. I think of Claire and all of you all day long. This is awesome news!!! My heart is filled with joy as I know yours is overflowing.

  28. My prayers are with you and your family. Positive thoughts need to surround all of you. I KNOW how difficult this can be. The unknown. There is NOTHING you can do to change what will be. So concentrate on the NOW. I remember the lack of sleep I experienced. I know it is hard but TRY to sleep. Take advantage of every single minute that you are not at her bedside. You need to keep your strength up. You need not worry about keeping us updated. We, here, will patiently await your updates. You need to take care of yourself too. May your angels watch over you.

  29. How wonderful that her sisters got to see her! It’s also good to hear that she is trying to communicate. We are still hoping for the best for you and your family.

  30. I just want you to know my husband and I are praying for Claire and the rest of your family. We live in Colorado Springs. We are on staff at Woodmen Valley Chapel and there are hundreds of people all over the world praying for all of you. No need for you to respond – I’m sure you are overwhelmed with everything. I so appreciate the updates on your blog and look forward to hearing about daily miracles with your precious little Claire.

  31. Hospitals are weird like that. They are like a whole other world. And once you’ve been inside for 20-30 hours you walk outside and it’s like you forgot there is a whole world out there. Elections happen (what’s that?), people are going to work (Huh??), people are graduating college and partying (what’s a party?), birds are feeding their babies, there are airplanes in the sky full of people going somewhere (where would anyone go at a time like this?), and weirdest of all people are doing things so insignificant to you like landscaping (who cares about a few weeds right now?). I remember being at the hospital for 10 hours once as a visitor, entering in the early am and swearing it was about lunch time… realizing not only did I miss lunch but dinner too and my stomach didn’t even notice.
    Praying for you guys…..

  32. Claire is continuously in my thoughts and prayers. I’m praying for nothing short of a miracle:) Always remember that many people are praying throughout each day and night, and GOD always hears:)

  33. Oh, please be easy on yourselves! You are going through so much right now. If you miss an update it really is OK! We know you will be back when you can. You need to focus on your family right now and loving on them. We know that if you miss writing on here that you are taking care of your family. I am praying for your Claire, her sisters and Mama and Daddy, too.

  34. I learned of Claire though my friend Mike (Claires Uncle?) I have been following her since the accident. Soon as I heard I told my church and well Spokane is praying for you and your family and it is in gods hands! WE will never stop praying for Claire and hope for a speedy and full recovery! Thank you for keeping us all up to date! TONS of prayers coming your way!

  35. Thanks once again for the update on Claire’s condition. It’s encouraging to know that she is making progress in the right direction. It is hard not to worry about what the future holds, but as the song says, “Many things about tomorrow I don’t seem to understand. But I know Who holds tomorrow and I know He holds my hand.” Please continue to take heart in the fact that God knows all about Claire. She is important to Him. He knows the very number of hairs on her little head. He created her and He will give you strength to make it through one minute at a time. We are praying for you and you are constantly in my thoughts. My church, Harbor Baptist, in Moorestown, NJ, is praying for Claire and your family, as well. We won’t give up praying until she is where she needs to be. Please know that my heart is full when I think about what you are being called upon to bear.

    In Christ’s Love, Vickie

  36. Of all the thing going on in your life right now, please put “updates” way on down the list!! (unless it provides you with peace and comfort). The many many people who have learned to care deeply about your family would never want to put any expectations on you!! Put yourself where you need to be, and we’ll be in the background praying and sending loving energy to all of you!!

    Yvonne
    Raleigh

  37. I am continuing to pray for Claire’s full restoration and for your family’s peace. Our God is still a God of miracles and by His stripes Claire will be healed. May God bless all of you and work this situation to His glory. Peace be with you throughout this PICU rollercoaster.

  38. Dear Tiffany and Tyler,

    I am so sorry you all are going through this. Our son Michael survived drowning at 21 months in Oct of ’08. His recovery has been slow and painful but it is recovery non-the-less!

    I was happy to read of Claire’s coughing and swallowing, what a positive sign. Michael had a trach for 11 months because of his poor swallow reflex and lack of coughing ability. He regained those abilities even though we were told not to expect any improvement.

    Claire’s agitation sounds exactly like what so many people with brian injuries go through: storming. Sometimes called neurostorming or sympathetic storming. http://ccn.aacnjournals.org/cgi/reprint/27/1/30.pdf

    I’m part of an online group for families of near-drowning children. It has been incredibly helpful in terms of support and information for treatment options, what to expect in the early days, alternative therapies, etc. the address is http://groups.yahoo.com/group/parentsofneardrowns/

    God bless you and your family,
    Sabine Summerville

  39. Praise God Claire’s responding so well after having that vent taken out! And how wonderful that Autumn and Heidi got to visit her! That they told you they want her back the way she was means they can keep the lines of communication open and express their fears and that’s good too, even though it hurts. I too hope you and Tiffany got a better night’s sleep–Claire too! God is with you, and so are all the many people praying on behalf of all five of you. I am SO glad you have so many friends around you loving you.

    Your posts help us all, but not at the expense of your rest and what you need to do for Claire and your family. So do what you need to do–write when it’s helpful to you, and trust that we’ll be praying for you even when you are too busy or tired to do it.

    Love, Dodie and Grandma Rae

  40. Tyler,

    Please know that my thoughts and prayers continue to be with you, your beautiful family and Claire’s journey to a full recovery. What a brave and strong little one Claire is, which apparently she gets from her loving parents! Know that your family is very special to all of us at Fox. Hugs to all of you.

    Cindy

  41. Dear Tiffany and Tyler,
    Thinking of you and sweet Claire. Please know that you and your family are in my prayers. I hope you got some sleep last night and that Claire is doing well today. Continue to focus on today and not worrying about tomorrow. I know, easier said than done, but tomorrow will take care of itself. Love to you all.
    Donna (Nia class)

  42. It is a big step forward, and indeed great news that Claire is breathing by herself. Our prayers continue to be with Claire and hope that she comes through on all fronts one by one, in good time.

    Kaushik, family

  43. It’s a pleasure to send prayers and praises from the staff of Praiseworks Church. Thank you Lord Jesus for your awesome hand of protection and for your comfort.

  44. Dear Tyler & Tiffany
    We have never met but I have been at IBC many years and have heard about Claire thru email. Just wanted to say I am praying for Claire and all of your family. Keep your eyes on Jesus. He is your strength and will bring you thru this. Remember that nothing is impossible with God!!!

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