Sunday, August 1: Update

We were shaken today from whatever semblance of normalcy we had obtained since coming home. Claire completed a feeding around 12:30 PM today and we were calling emergency services at 1:00 PM. Before telling the story, know that Claire is all right now. She is sleeping well. I won’t sleep as well tonight.

Claire has been having trouble keeping her meals down from time to time. We’ve had to monitor how much she eats in one feeding because we’ve found that the recommended dose has prompted some reflux. The trouble has accompanied the evening feeding for the most part. Today’s episode happened after her midday feeding. When Claire begins to have reflux, we coax her to breath and calm down and she normally responds. The coaxing didn’t work today. Claire lost all of her lunch today. The trouble began when she didn’t discharge all of the liquid meal. Some of the liquid was not evacuated completely and caused Claire to gag and choke. By the time I was starting the Heimlich she was turning a pale blue. Tiffany called emergency services immediately while Esther and I worked on clearing her airway. She soon had air back in her lungs and was breathing well. All this took place in less than a minute.

The EMTs checked Claire and found her vitals to be strong and her lungs clear. Once she was breathing again, our biggest concern was whether or not she had aspirated anything. Even though her lungs were clear, we toiled over whether we should take her to the ER or not. We also didn’t want to subject Claire to any further unnecessary poking and prodding in an acute setting. We called Claire’s primary care physician and she helped put our mind at ease by equipping us with the things we need to watch for to make sure Claire hadn’t aspirated. We’re 10 hours post-incident now and Claire isn’t exhibiting any of the signs, and we make sure to check every 10 minutes.

The episode seems innocuous enough, but it was most potent because of the images it recalled for me. The action I had to perform today was similar to the actions I performed on May 30. The parallels brought the emotional burden of that day back to my shoulders. It also reminded us of just how fragile Claire is right now. We’d begun to settle in to the idea that Claire’s big hurdle right now is her rehabilitation and recovery. We’d been lulled into a false sense of security that those would be our only hurdles. We thought we were past the challenges like today’s episode. That sense of calm was shattered today. It has drained us.

We takeaway some more knowledge about how to handle these situations as Claire’s first responders. We are also refining Claire’s feedings schedule to be more kind to her stomach and help avoid these situations in the future. But these learnings come in the wake of another shocking event. What feelings we had of our new normal have been scattered. Tomorrow we start a new “new normal”. We’re uncertain whether that will be sufficient to establish a routine, or if there is another freight train waiting around the corner.

We hope that train doesn’t come tonight, but we’ll be checking on her every few minutes to make sure we can head it off. It’s about time to check on her again, so I’m going to wrap this up. Thank you for your prayers and support. We need them for days like this particularly.

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35 thoughts on “Sunday, August 1: Update”

  1. Praise God that you have Claire…and that she has you. You guys are remarkable parents and someday soon, the fruit of your amazing love and care will materialize in a beautiful daughter who will be a walking, talking miracle.

    Praying without ceasing.

  2. I’m so sorry to hear about that scare! It’s all very scary once you’ve faced the worst. You get a hightened awareness that things could go wrong at any given second. A blessing and a curse all at once.

    My son, Christian, had the same thing after his accident. Right after his accident he threw up after every meal, during the night, etc. As time went on and after a lot of trial and error and changing feeding schedules every couple hours, we’re finally on the right track. After a year we have gone about three weeks with absolutely no throw ups!!! Just wanted to let you know that this can be normal for our kids.

    Is Claire on an acide reflux medicine? What type of formula is she using?

    We had luck with Reniditine (Zantac) and changing Christian’s formula to an elemental formula called Peptimin Jr. It’s broken down a little more to be easier on the stomach.

    I’m so glad Claire is okay! ((HUGS))

  3. Thank you so much for taking the time and energy to write out this emotional story. It helps us know how to specifically pray and keeps us focused on the end goal. Love you guys and may the sleep you get be exactly what you need for the day.

  4. I have only written on your comments one time, but I pray for Claire and your family every day. Each night I read your wonderful blog and I feel strongly guided to continue praying for Claire. The number of people praying for her is a miracle in itself. Claire has brought many people together with a common focus ~ her well being.

    Please keep posting and remember as often as possible, that so many hearts united in a common focus is a miracle. The day to day mechanics of caring for Claire is you and your family’s willingness to show up and be present. That is powerful. Claire is doing her part. You are doing your part. The community in prayer is doing their part. The ups and downs of day to day are part of trusting Divine Intelligence. As with anything, some things are natural to celebrate. Some things, we learn to be present with. Feel what you need to feel as fully as possible, breathe into it and let that feeling move. As soon as possible, bring your heart back to gratitude. That will empower you and enable you to keep moving forward in the days that come.

    Continued prayers for Claire and everyone who loves her.

  5. I was working on my lesson plans today when I saw the flashing lights coming into the complex. I too had flash backs of that day, I am happy to hear that she is ok and that she was able to avoid the ER. Please remember if you need anything I am just across the lot, I can be there in less than a min. I still pray for your family, and it seems you never leave my mind. My nana calls me every few days to see how she is doing. I will say an extra prayer for you and your family tonight.
    god bless,
    Kristen

  6. Oh my goodness, I’m so sorry you had to go through that scare today, and relive portions of the previous experience. It happened quickly, but your vigilance and quick reactions saved her life today. I imagine it’s difficult to focus on that positive, but those are the facts – I pray you find some comfort in that.

    You’re right, Claire is fragile right now, and that’s got to be unnerving. But I pray and believe that with the Lord’s guidance you will all soon find a balance, and it surely will evolve as she grows stronger. And she WILL grow stronger. It’s so comforting to see the other folks who have commented, that have experienced the same issue and overcome it. You will too. Bless you guys for being such loving parents.

  7. I am so sorry you all had to experience this shock. I hope you are able to get her feedings regulated and that this was just a fluke. I will keep all of you in my prayers today, as always.

  8. So very, very sorry to hear of this latest frightening incident for you and for Claire. Praying God will help you deal with the fears and anxieties this has triggered. It must be so difficult to relax not knowing what the next incident will be. Please remember that God is still in control.

  9. Tyler & Tiffany – my heart goes out to you that you went through that yesterday… I bet your nerves are so frayed. Claire and your family continue to be in my daily, if not constant thoughts.

  10. So very sorry to hear about the scare with Claire andhaving to relive the past. You all are the best and I will continue to prya for all of you.

  11. We pray for you without ceasing. Even when I forget to mention Claire and the Maritn Family in our prayers, the kids are quick to remind me. Your postings and pictures may us feel so connected. May this week be filled with blessings and peace for you.

  12. What a scare this must have been. I could feel my own adrenaline kick in as I read your post. It sounds like you all handled it well. May today be calmer and let you find some peace.

    Nancy

  13. I’m so sorry you had to go through this scare. You both are amazing parents and Claire couldn’t ask for better care givers. She is in wonderful, loving hands; I will continue to pray for her total healing and that you won’t have to go through these episodes ever again. Thank you for the updates – your strength is inspiring.

    Always Praying!
    Dana

  14. I’m sorry that you had to endure this big scare – and I can’t imagine the flashbacks you experienced. Our daughter had big problems with her feeds and handling volume – sometimes it seemed she was throwing up more than we were putting in. Domperidone helped somewhat, but what really helped was tweaking the amount we were feeding her. I know that the dieticians have everything calculated perfectly – but we weren’t happy watching her suffer like that. And for some reason, her height/weight went from 50th to 90th percentile and no one was concerned. Anyway, we did our own imprecise “calculations” and she did just fine.
    Praying for all of you.

  15. Oh my, i’m glad that Claire is ok, My heart and emotions are with you both, and I will continue to lift you both up during this more chaotic time of emotions flowing back and forth. May God’s Peace and Comfort be with you today.
    Christina

  16. I think the feeding part was the hardest in the “post-hospital” days. Eventually, we got it worked out – an amount that she would handle, at a rate she would handle, and we’ve been good ever since (unless she is sick)

    You’ll get there – trial and error!

  17. What lousy deja-vu!
    Here’s to better digestion/less reflux for Claire, and more sleep for everyone. [ bad enough when a ‘normal’ adult has reflux, let alone somneone who can’t control or comminicate it].
    Care to the caregivers; hugs, love, and prayers to everyone,
    Susan D.

  18. My heart went up to my throat when I read the word emergency. I praise God that Claire came through and do not have to have any unecessay procedures. What a scary thing for all of you.
    You do not know me, but I have been following your journal pretty much from the very beginning. Please know that your precious family is in my prayers. I live in Albuquerque, NM and found out about Claire through my daughter, Kristina Goldsworthy who is a MOPS mom. I immediately sent prayers to our prayer chain at our church and I just wanted you to know that we are all praying for Claire. Through your journal I can see God’s Army of Prayer Warriors. And to see how far you have all come is amazing. Please know that our hearts are with you.

  19. I admire the bravery you exhibit each time you encounter a new hurdle. This would have been a terrifying event for any parent, especially given the journey you have been on. This is further proof to me that God equips us in ways that we can’t begin to imagine.

  20. I am so sorry for how this incident must have brought you back to May 30. Unfortunately, I am no stranger to these reflux and aspiration events. Both of my children have severe reflux and aspiration issues that cause them to have laryngospasms (which, in turn, cause them to stop breathing).

    Have your doctor’s talked to you about a Nissen Fundoplication for Claire? If she struggles with refluxing her feeds and is an aspiration risk, this procedure may provide you with some peace of mind. It will prevent anything from comig back up the esophagus. When she is able to take feeds orally again, it will allow food to go down but not back up. My older son feeds orally (we only have to thicken liquids to make him a safe oral eater) and this surgery has eliminated his respiratory events. My younger son’s aspiration is more severe and so he takes feeds through his g-tube but the surgery has reduced the respiratory events because it prevents the reflux from occurring.

    My prayers are with you!

  21. I can tell you hard this was on all of you. Hope today has been more peaceful. Yes, Claire is fragile. But she is a tough little fighter too, and you brought her through it with quick thinking and the help of her doctor. You’re doing the right things. Remember that she is in God’s hands as well as yours, and those are very good hands to be in. Praying for you all constantly. Love, Dodie

  22. Sorry to hear about your trauma! It will take some time to relax again. Keep up your good care work. We will be praying for you all.
    Love and prayers,
    Theo and Ruth

  23. Dear Tyler and Tiffany,

    I’m so very sorry. Truly I am. When I shared this incident with George, his eyes filled with pain, and he just shook his head. We have so many similar memories. At times like this I don’t suppose it’s much consolation to know others have endured this road before you. You’re on it now, and it’s exhausting. I pray God will give you wisdom and an extra portion of peace. I pray you’ll rise above the fear that threatens to crush you. God has preserved Claire through so much already, and He is able to awaken you in the night if necessary. I pray you’ll rest in His faithfulness, even when everything seems to be screaming that He doesn’t care. He cares.

    You are amazing parents. Your love for your children is evident to anyone, but God loves Claire more than you do. He created her for His glory and pleasure. Nothing is too difficult for Him. He will lead you day by day, and He accomplish His purposes in and through her life and yours. I believe that with all my heart.

    Praying for you. All the time.
    Love,
    Jeanne

  24. I continue to pray for beautiful Claire and your family every day. I am so very sorry you had such a terrible scare and pray for you to have peace and Claire’s recovery.

  25. Praying that this incident only makes y’all stronger and more vigilant, but does not rob you of the joy of being home. Stay strong, cling to each other and know that countless strangers are praying for Claire’s health, rehab and safety and for strength and peace for your family. ~ praying stranger & mother of a former patient at OCH

  26. I don’t know if this will be helpful but we have been down that road quite often, more so when Riley was a baby. The best thing we found to keep her feedings down was to only do about 1-2 oz. at a squirt. We waited 5 min. and then did another 1-2 oz if it appeared that she was doing ok. It took us much longer to finish a feeding and then the next feeding would start all over about an hour later. Gradually she was able to handle several ounces at a time but I still watch her carefully to this day.
    You are daily in my thoughts and prayers.

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