Tonight is my first night with Claire at OCH. I’m enjoying my Salisbury steak and powder mashed potatoes as I write this. OCH is having a Father’s Day meal downstairs, but Claire has had a difficult day and I’m not comfortable going down to grab a slice of pizza. So I’ll stick with my steak and Claire with her Ensure.
Most of the activity at OCH has been directed by Claire. The therapy sessions have been minimal so far as the OCH team waits for Claire to heal a little more. There’s not timetable on how long it will be and that uncertainty is starting to take a toll. We made the transition to OCH because the professionals (and parents) were eager to get started on rehabilitating Claire. Action has lacked. I’m trying to parse together what percentage of my urgency is due to being an eager parent and what percentage is due to valid concerns. I have to remind myself that it’s only been two and a half weeks since the injury and only three days that we’ve been at OCH. Those reminders become less potent with each day.
And each day brings new challenges. Claire threw up her breakfast Tuesday morning right before being transported. It happened again yesterday and twice today. The pattern is always the same. Claire coughs, is unable to expel or swallow the respiratory secretions, subsequently gags and then throws up. It’s painful to watch her struggle as her cheeks flush and her eyes begin to water. We discussed this pattern with the charge nurse and will begin some respiratory therapy and a new medication to help with the nausea and secretions. I hope we start tonight.
We will be starting additional medications on Monday as well to make Claire more alert. She will be receiving some meds that increase her dopamine levels. The providers were waiting to give this to her until week three to make sure her brain had time to naturally heal itself. They feel comfortable administering the drug next week in an effort to exercise her mind. We’re looking forward to next week because it seems the rehabilitation plan is set to begin in earnest then.
I intend to speak with our social worker tomorrow to discuss Claire’s plans. We have been told that we will have our first Care Conference next week on Tuesday or Thursday. I can’t wait that long. Between my Salisbury steak and this paragraph, I got a chance to go down and grab some of the aforementioned pizza while a nurse was in with Claire. I spoke with another couple that have been here since Mothers’ Day. Their son is a triplet member and has had some severe respiratory difficulties. They get to take him home on July 6. They were kind enough to share the wealth of their knowledge before they depart. They encouraged me to contact our doctor and/or social worker and voice our concerns about the pace. They shared our early concerns: one lesson learned is that they wish they would have talked to someone sooner. They had a similar experience to our PICU family with their NICU family: it’s hard to match the level of care when the bar is set so high. From what we’ve heard — from friends and comments here alike — is that OCH can match that level. I’ll be discussing that with them tomorrow.
Thank you again for all your prayers and support. Please pray for wisdom and tact for me and Tiffany as we talk with Claire’s care providers tomorrow.
Our Claire Journal 
Many prayers are with you. It’s a long hard journey.
Dear Tyler and Tiffany:
I will certainly be praying for you, as you discuss Claires’ needs with her care givers. I pray that she will receive the best treatment possible, and that it will fulfill all her needs for a successful recovery.
Thank you so much for your updates, Tyler.
In His Love, Ken & Jana Kirkpatrick
I am still in awe of you and Tiffany, although we have never met. You both are full of grace, I can tell, but you are also concerned parents. Hopefully the staff has been trained to deal with this situation, so just speak from your heart and listen to your angels (a/k/a/ The Holy Spirit), and you will know what to say! Peace is coming! God bless you all! Hope y’all have a restful night! pat 🙂
So…Tyler, you don’t know me at all, but Tiffany does. 🙂 Would visitors be fun for you guys or stressful? I understand we are still waiting for the green light, but I was just wondering how we can practically support you. Also, where are you? I see several on the website. Are you at the one near Big Baylor downtown?
Glad to hear details from the day. I hear some humor in your last few posts. That’s nice to hear.
Praying for yall,
Amy Cody
Amy:
We are eager to welcome visitors. We’ve noticed that as Claire is weaned from some of the meds, however, she is easily overstimulated. The caregivers expect this to diminish over time. For that reason, we are happy to welcome visitors, with the caveat that it may not be a good time to see Claire. I will be updating when visitors are welcome to stop in and see her. We hope that next week after she starts her new meds on Monday and we get our Care Conference we will have a more concrete answer for seeing Claire. Just know the door is always open to come see us and the girls.
We are at the OCH near Big Baylor in downtown Dallas.
Tyler
Thanks Tyler!
Every morning after getting up I sign unto your blog, at work your blog is up on my computer to where my coworkers ask me thru out the day of any updates and before I go to bed again I read your blog. You all have become such an important part of my daily routine. It has helped me focus on my prayer life. And helped to continually pray for you all. Thank you for allowing us to be part of your life and giving us a way to give you words of encourgement and prayer.
The verse that God put in my heart for you today is “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God.” Phil 4:6
We love you…..
Hi Martin Family,
Just a short note to let you all know we are thinking of you and keeping tabs on Claire. As always, we keep on “hopin’, prayin’, wishin’ and wantin’ ” for all good things to come to Claire.
Much love, hugs and kisses.
Uncle Andy, Aunt Susan and boys
I would love to come and see Claire, and the rest of your family if that is ok. Is there anything that I can do? I am leaving the state in about a week, but I am willing to do what I can do in the meantime.
god bless,
kristen
Kristen:
You are welcome to come visit before you leave the state. We want you to see her before you leave.
Tyler
Praying unceasingly for each of you.
My prayers continue for your family. I pray for your strength as you work as advocates for Claire!
Hey guys, thanks for the update. Glad you got some Father’s day pizza, Tyler. I am thinking about and praying for you guys each day.
Jon
I am a friend of Donna Bishop’s. I have been following your blog and praying along with you. I am also the mother of 7 and a doctor’s wife. I strongly encourage you to speak up on behalf of Claire. Speak up now. Speak up firmly and in confidence. You (parents) are her best advocates. Doctors and all other professional care givers are phenomenal people who have studied a wealth of information. If they choose, they are God’s hands. They are also fully human. They need to hear from you. If you have concerns you need to voice them. Be polite but direct. I hope this encourages you and empowers you to voice your concerns at the earliest time. ~with continuous prayer for complete healing!! Laura
Dear Hevenly Father, we come before you so thankful for all the wonderful things you provide for us every single day. Family, friends, loved ones, near and far. Heavenly Father, we thank you for all the wonderful care that You have so lovingly provided. The caretakers, the equipment, the knowledge. Lord words are not enough show our thankfulness. Heavenly father can you please provide wisdom, tact, and courage for this family? We thank you Lord that Your word says that its your desire to give us the desires of our heart. Our collective hearts today desire for a full healing for Claire. Emotional, physical, and everything in between. We thank you Lord because we know in Jesus Christ You have already healed her. Thank you Lord. In Jesus precious name we pray. Amen.
So sorry to hear about the vomiting. Hard on Claire, and hard for you to watch. I hope the new meds clears it up pronto. And I pray to the Holy Spirit for you and Tiffany as you speak to the social worker and the doctors tomorrow about your concerns about the pace. I am sure you’ll be led to the right words to communicate your concerns for your girl. Both you as parents, and they, as caregivers, want what’s best for her. That can only happen if the lines of communication are totally open. I don’t doubt your wisdom, or your tact, for a moment. Do try to get some sleep beforehand; that will help! So glad you found some other parents to talk to–I was sure that would happen. Cafeterias and waiting rooms are good places for that.
I hold you all in my prayers constantly, as do many others I’ve told of you. You’re a special family, and I’m glad I’m related to you.
Love,
Dodie
Ugh… how to have patience in a situation like this??? I feel your frustration Tyler! You want and need what’s best for her ASAP…yet you’re so right, this is a marathon, not a sprint. I pray that the Lord calm your hearts and give you the perseverance you’ll need for this race, for each day that lies ahead.
Praying,
-C-
Hang in there. OCH is a wonderful facility, they know what they are talking about and they know what needs to be done to help Claire. The PICU was about saving Claire, OCH is about rehabilitation. Rehabilitation is a long journey and requires time and patience. Both of which are hard, but worth the end result. Don’t lose faith. OCH has had experience, lots of experience, with children of all traumas. Their staff is properly trained and they will take great care of Claire. They will understand your concerns, your frustrations, and your wishlist for more for Claire.
We are still here praying for you guys.
Makenzie spent 8 days in the ICU before going to rehab at the Children’s Hospital Denver. They started working with her for about 6 hours a day on day 2. I will pray that you have success talking with Claire’s team to get the pace moving a bit faster.
Makenzie also struggled with vomiting. She was DX with Failure to thrive and after about 8 months we had a GJ tube put in. This required nothing but a trip to IR and a different type of Mic-Key button. If I had it to do over we would have done the GJ button the day she started vomiting. About 2 months ago we switched back to the G tube and Makenzie is doing great!
Please feel free to contact me at: makenziesmiracle@comcast.net If you have any questions . I also would love to share some of the alternative therapies we have tried if you are interested.
Tons of Hugs and Prayers
You all are never far from our thoughts and prayers! Much love from Colorado!
Love you and miss you all. I’m so sorry to hear she’s having such a hard time eating. I’ve been thinking of her all day. I agree that you and Tiff should chat with the staff about timetable and your concerns. I have every faith that you will accomplish your task with grace and composure. Let us know if we can do anything this weekend. Wanna have the girls come over here for a bit? Call you tomorrow. Love always!!!
So many blessing. So much has happened is so short a time. From lifeless and drowned on a flight with only a prayer for hope. Just 2 1/2 weeks ago. hardly the blink of an eye.
How fast GOD has answered. How fast he has breathed hope into all those who have prayed for the healing of Clair. The shear wonder of her once dead eyes now opened and seeing and hearing and responding to the love being poured out to her. Doctors have expressed the wonder of those who die. there one second and then gone. Just a mere moment. How much more wonderous these moments where life bloomes from the once dead body of a beloved child.
I understand your frustration. Camryn was in rehab 6 weeks and she only had a combined rehab of 2 1/2 hours per day when all was said and done. The rest of the time we sat in our room and were ready to climb the walls. I see Makenzies mom offered help above and as I mentioned before I’m happy to be a listening ear and have lots of wisdom to share. I can almost guarantee my daughter has been on every medication you can possibly mention at least 1 time. Contact me anytime. lasurman@gmail.com
I understand your frustration too. Speaking up is exactly the right thing to do. I have been there with both of my kids. We have a children’s rehab here (charlottlesville,va) and I have seen amazing things happen with kids that we would meet when my son was there for an activity. It was a slow process for the family. Since I came only once a week I could see such WONDERFUL progress with the children. One parent told me that she was talking a picture everyday at the same time (if possible) to see what changes were happing that she and her husband couldn’t see. She said she did the same with her pregnancy and the first year of their kids life. Now looking back at them she said the changes amazed her that she couldn’t see then. I hope that makes sense. 🙂
oh! Order out some food! that was another thing all of the parents did at Kluge!! ( our rehab here)
Prayers and Hugs all the way from VA!! The Wood Family!
Good work Tyler and Tiffany!
You guys have come a long way! When you have those hiccups in the road look back and see how far you have come and remember you do have something to work with. Claire sounds like a tough cookie! And a precious one to boot!
When you speak with your social worker remember squeaky wheel gets the grease. The docs and therapists at OCH were always very responsive to all our requests for new meds to try, massage to try, cranio-sacral release and others (we were at OCH from Nov 08 to March 09) JD had the same issue of vomiting following a cough from his secretions and then the subsequent gagging. One thing we figured out was that he was not getting enough free water (aside from the water that is in the ensure-that is mixed around with the high fructose corn syrup). The extra water will help thin out the secretions in her throat as well as her tummy. JD had/ has issues with mucous in his tummy also which made venting his gtube difficult (does Claire have a nissen, if so it makes it difficult for her to burp so you have to sort of burp her from the gtube) Anyway ask your dietician about water amounts based on her weight but be sure to allow for free water, not just what is also included in the ensure. I didn’t know the difference and maybe could have saved JD some difficulty if I had.
Dr. Mac, Dr. Raji and Dr. Pearson were all so responsive to our requests about meds and therapies, really good staff. Dee Spearman and Mary in therapy were super also. Dee recoginized JD’s attempts at a smile before it reallly looked like a smile!!
Good luck with the dried potatoes. They have a huge cafeteria over at big baylor and a Starbucks!! woo hoo! (if you are a coffee and tea fan) also a drive through Starbucks on the same street!
I continue to pray for little Claire’s recovery as does my bible study. God is still in the miracle business. God bless,
Beth and John Hartman
Beth 512-394-9894 home
John 512-947-9894 cell
(and JD, Macy, Catherine Grace and Clare)
Beth:
Thank you for the insight. This helps us and gives us some more to discuss with the caregivers. Claire does not have the Nissen and right now it’s looking like she won’t need it. The respirator therapy is going well. Thanks again.
Tyler
I am going to see you tomorrow!! I can’t wait to be there in person to hug you both and walk though some of this stuff with you. Whatever you need from me…just say the word. I am coming to help in whatever way I can.
We are driving through the night so I should be there in the morning around 10am ~ish.
Love you all!
Michelle
I’m sure you found the right words and I hope they do what’s necessary for the wellbeing and progress of Claire. You are in our prayers. Besos 🙂
Hi Tiffany and Tyler,
I started reading about Claire via Emily Wood and have been following your story. You mentioned about the couple you met with the triplets….I work with the mother and find it so amazing that you have met and I just had to say something!
Take care!
Lauren
“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”
Not my own words. But I wanted you to hear them. Prayers and Love from us to all of you!