Monday, July 5: Update

Medicaid, Social Security and pharmaceuticals were the topics of the day. We started down the winding road of bureaucracy and red tape as we learned the financial mechanisms to care for children with ongoing disabilities. We only caught a glimpse of it. We didn’t like it.

The internal struggle we have now is coming to grips with possible realities we are hoping against: to qualify for these programs means that Claire has not made the recovery for which we are holding out hope. This is contingency planning at its emotional worst. While it is financially wise for us to do, we don’t like it and we don’t like the implications. Nobody wants their child to be eligible for Social Security benefits before age 65 or to automatically qualify for Medicaid for disability reasons.

But nobody wants this to happen in the first place. It’s the hand we’ve been dealt and this is a part of the process, an area of education we never wanted to receive. So we approach this step as a bridge to Claire’s recovery. Like the G-tube and ventilator, we hope that Claire’s qualifications for these two programs will be temporary. We hope the day she is disqualified from them comes soon. I can’t imagine another time I’ll have the opportunity to celebrate someone not giving us money. We’ll party it up big.

Part of he road to that recovery also deals with Claire’s reliance on the meds. We opened up this discussion with the doctors again today. I’d like to see a more proactive approach to Claire’s pharmacological strategy. We have been trying to strike the balance between administering drugs that stimulate and drugs that calm her agitation. The problem is that there are strong sedation effects with the calming meds. So we are simultaneously waking her up and putting her back to sleep. I don’t think she is taking too kindly to it. So I asked the doctors to start backing down on the sedation drugs so we can see how she responds. We cut her Ativan in half for tomorrow morning and will discuss additional tactics at tomorrow’s Care Conference.

We have a lot of questions for the conference tomorrow. We are going to meet with the nutritionist to discuss a more complex diet instead of the straight Pediasure nutrition she’s on now. We are also going to discuss continuous feeds through the night pursuant to a suggestion we received in the comments. We’re looking forward to the meeting tomorrow and hope to have a lot to report.

Claire had a good day today. She had a great night of sleep last night. We hope tonight starts a pattern of good sleep.

Thank you for your support and prayers. We hope many of you got to enjoy the day off from work today. If you didn’t, we hope everyone else didn’t rub it in too much.

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25 thoughts on “Monday, July 5: Update”

  1. Hi Martin family,
    I read your posts daily and pray for Claire as I read. I am sure it is not always easy to sit down and post but it helps us to know how to pray. On the assistance area, pursue every option. It will take some pressure off of you in the long run and you have paid in taxes and SS plus what the rest of us pay in and I can not think of a bette cause than to help with Claire’s healing.
    Your Medical City friends pray for you and look forward to the day that Claire and family will be able to come back for a visit.
    Chaplain Jim

  2. Ok…new prayer request. No money from the government! Kidding. We will pray she will be disqualified and recover more quickly than anyone could imagine! I will also pray for your care conference tomorrow.

    Yes, our day off was fun as a family. Did you get to have the girls together with Claire? Tyler, how is your work? I haven’t heard about you. Did you take a leave of absence? …or are you going to work?

  3. While my older sister was not in the same situation as Claire, my parents had to make a decision to qualify her for Medicaid and Social Security in her late teens. It protected our family and I’m so glad they did it. You are protecting your family – that is what parenting is all about. You are being smart, not only for Claire, but also for Autumn and Heidi.

  4. Dear Tiffany and Tyler, we’ll be thinking of your family and praying for you and Claire when she reduces her medicine tomorrow… I have been following your posts from day 1, and Claire has always been ahead of the curve in stabilizing her body when the doctors didn’t expect her to. You have been so strong in your faith – and I believe that’s what helped Claire along the way… She is a fighter, and she’s got such strong, smart, proactive parents, who intuitively know what’s best for Claire. You have the connection with her, and when your instincts tell you something – I am sure it’s the best thing to do in planning her recovery. We all pray and hope with you, to help you during the moments when it’s so hard to stay strong. But your resilience has passed to your daughter in this fight, and she feeds on your faith, energy, and strength. God has been with you and your family through this, and I know he will continue helping your little girl get better and better every day. I know that medical and pharmaceutical terminology must be putting scary labels on Claire’s condition – but I know there are no labels of the miracles that God has granted, and nobody can ever tell for sure what’s going to happen in the future. But believing in Claire’s 100% recovery faithfully and unconditionally is all we can do – and my family and I are here to help you do that.

  5. I pray that your hopes become reality and that Claire’s need for assistance agencies is short! I hope the reduction of medications brings more alertness and a faster pace in Claire’s recovery. I continue to keep your family in my prayers!

  6. Wow, Claire is one tough cookie – takes after mom and dad I guess.
    May you have good trial for meds/feeds today/tomorrow.
    Care for the caregivers;
    hugs and prayers.
    Susan D.

    PS: next year Claire will LOVE the fireworks!!

  7. Dear Tyler & Tiffany july 5 ’10
    y; you are now dealing with something we did not have to go through with our son, Andrew. Your experience so far has rung grandly in our memory of an 11-yr old boy lying unconscious in the street, discovered by a neighbor (in Claremont CA, 1972)),
    bicycle in the gutter. Then came the sirens, the hospital, our
    family physician and a neurosurgeon. Andy was unconscious for six daysm then semi-cons. for fiv e days before he began to pull our. I will neverf forget the neurosurgeon sittimg me down and saying ” If’s going to be a long time, if ever. I couldn’t handle that and keeled over in a dead=away faint. Diane took a
    more confident stand. She said she knew her son and he would recover soon. She was right — the doctors, the hospital staff, the therapists were all astounded at his recoveryy. He had to learn to crawl, then walk. Speech, also.
    They said head injuries took longer. He was back in school that fall and did well ; on through high school and colege and even an MA in English.
    We have been following the Claire journal daily, trying to read every word through our tears. When I tried to read out loud I blubbered my way through. We are grateful for every little
    good sign that breaks through. And we would long to hug you all. Tyler, you are an incredible writer! You transmit facts, fresh angles, and heart-feelings — you dare to bare your soul.We continue in prayer – the whole retirement village is
    praying, too, plus our church. We’re looking up. — Uncle Ed & Aunt Diane. P S we leave for Japan on july 21– six days followed by 5 in Honolulu. Andrew will keep us informed.

  8. My son and I wrote Haiku today – here is one that sums up what everyone above has contributed:

    ‘My thoughts flutter past
    never caught, seen, or read by
    the good friend they love.’

    I will change this to:

    ‘My fluttering thoughts
    caught to be read o’er and o’er,
    pulsing ‘keep hope strong.’

    You are special, Tyler and Tiffany – Love, Lynne

  9. I am sending more prayers for you and for Claire’s medical team for wisdom and perserverance to see Claire through this fight. I am amazed and in awe of Claire and your family. I see God working in Claire and you all every day through your posts and I am inspired. Thank you for this gift of inspiration. I won’t stop praying. You can count on it.
    Colleen

  10. Tyler and Tiffany –
    I’ve been following Claire’s story since it was posted on Cole’s Foundation. My heart goes out to you! If it helps at all, both of my kids are on Medicaid. It literally saved us from financial ruin. Everything is now paid at almost 100%. We are in Illinois so, I am sure it is a bit different. The only time we have had any issue was when we went to an urgent care in another state. I am still rather angry about that.. how can any business turn away a child who is struggling to breath? Grr.. Both of my kids have had appointments (and one had a surgery) out of state though with no issues at all. I am seriously contemplating applying for social security too. I had to leave my great paying job when my daughter was born and still can’t return 4 years later.

    At any rate, I would not hesitate at all to apply for everything you can. Apply as soon as possible too. It often takes well over a month to get insurance set up and with her medical needs right now, that could cost you a lot. It will not go retroactive. You should still be able to keep her on your insurance as a secondary policy for the rare Dr that does not take Medicaid. Definitely keep her on your dental plan (we have yet to find a dentist who will take Medicaid even though it supposedly covers dental too).

    Hope that helps! Feel free to email me if I can help in any way. I am praying for y’all! Blessings, Ann

  11. Thinking of you as you navigate the slippery slope of applying for assistance. When we were first handed “the pamphlet” I handed it back, thinking we couldn’t possibly be like the families this program served. All it did was delay any assistance, really. Then came the home visits and discussions of installing wheelchair lifts and stair gliders (whatever they’re called). By all means, access whatever you can, but you can do a “wait and see” approach for those big ticket items. We declined the chair lift – and are quite glad we did (much to my son’s chagrin – he would’ve had a blast with it) because she walked within a year of her injury.
    I so hope the Ativan wean goes well. Be prepared to take one step forward, two steps back – bodies tend to like drugs like Ativan, Clonazepam, etc. and weaning is tough. We tried 3 times to wean Clonazepam, and finally did it. Once the crankiness wears off, you will get to see more of Claire. I hope you get the support you need to decrease more of her meds – it’s such a fine balance, as you know.
    In terms of ordering equipment, we ordered a big, square squishy mat which helped with therapy, but also gave our daughter a place to chill out and roll around, watch TV, etc. We also got a ton of use out of a type of physio roll that looks like a peanut – get the red, inflatable one (perfect size) – it’s a great piece of equipment. Just adding my 2 cents.
    Hoping your care conference leaves you feeling empowered.

  12. I believe that Claire’s strength comes from having parents who are strong in their faith and resolve to do whatever they have to do for their family. I think she feeds of your strength just as much as you all are feeding off hers. She is a very blessed little girl to have parents like you and I know that one day soon, she will run to you, throw her arms around you, and tell you so!

  13. Sorry – one last thing – music. Do you have access to a music therapist? We found that our MT could connect with our daughter in a way that no one else could – she would try to calm her agitation with soothing lullabies, and one day she decided that wasn’t working so she “rocked it out” and Lola fell asleep! Opposite girl. Anyway, if you’re doing your own music therapy, something to consider.
    Does your hospital/city have a sensory room/snoezelen room? They are incredible, and many kids benefit from the lights/darkness/music/sensory experience.
    Just some ideas!

  14. It’s all a world none of ever wanted to visit. We have learned so much but wish we hadn’t had to learn about it. My prayers for Claire’s continued recovery and for you as a family. My love and thoughts are with you every day.

  15. Hopefully the financial aspect of the social security and medicaid can bring a little peace financially for you and Tiffany. I pray that it is temporary and hopefully with lowering the sedatives Claire is on, you will see much more improvement in the coming days. Stay strong, those girls need you guys! Hoping for some good news to come 🙂

  16. Oh – this is a whole world that no one ever wants to be a part of – and it is SO hard to navigate. I am so thankful for the assistance we get – without Medicaid, our family would be destroyed financially. And here in Colorado, there are 3-5 year waitlists to get Medicaid for disability only, if the family’s income doesn’t qualify, and SSI is not something we get either – we got lucky with a new Medicaid waiver that didn’t have a waitlist and we, unfortunately, qualified for. I hope your state is better! However, the home therapies help a LOT! Medications and feedings were some of the hardest things to get sorted out for us, too. Eventually we tinkered with everything and figured out what worked for us – there’s no single solution for these kids! Anyway – thinking of you!

  17. I hadn’t thought of the financial part of all of this as far as qualifying for SS or Medicaid at a young age was concerned. (I was too young to think of any that.) Information that for sure you are not excited to learn. And on top of it all, opposition from “red tape”, when you probably don’t even understand what all the “red tape” is anyhow. I’ll pray you have a quick understanding and patient people to listen to you and answer your questions.

  18. Tyler and TIffany,
    My heart goes out to you for what your are all going through right now. Your faith is amazing, and God IS protecting you and little Claire..If he brings you to it, he will lead you through it..I know you are faced with grim possibilites at the moment, but the LORD is a miracle worker and our saviour will not forsake you or baby claire. He loves his children and he loves you. A wonderful book I’d like to suggest to you is ‘Traveling Light’ by Max Lucado, it can be found at most Christian book Stores, it is a wonderful reminder of Gods love for us as we go through the trials and tribulations of our lives, Praying for you all daily. God Bless.

  19. Keeping the prayers coming – I’m sure she will be off gov’t assistance before you know it – look how far she has already come!

  20. On days like these I want wisdom and knowledge to find you to help guide you through these difficult and trying times. Good luck with all these difficult decisions.

  21. With all the stressssss n the patience required, you’re doing beautifully..really. It’s grrrreat that you’re proactive, asking questions n offering suggestions; that dynamic interaction produces great benefits to patients. The fact that you do it with grace means the staff will go above & beyond, and that’s all good for Claire:) Prayers up!

  22. My heart goes out to your family. Praise the Lord for all of her successes. As far as doing things to help out financially, have you looked into Shriner’s Hospital. I don’t know everything that Shriner’s is equipped to handle, but I know that they were able to help my brother with Cerebral Palsy from the time he was 3 until 18 years old all at no charge. There would have been no way that my mother would have been able to provide that incredibly great level of care for him if not for Shriner’s. I know that Claire will need many different types of treatments, but it would be worth a shot to look into it. I pray everyday for your family. Thank you for sharing your life with us. Being a stay at home mom with 5 kids, life gets a little crazy and stressful. You touch my heart everyday and remind me to let all the craziness go and hug my kids a little tighter and longer everynight. God bless you.

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