Friday, January 17, 2014

Home-Home

The last two weeks have been full of surprising but welcome changes. At our first outpatient clinic visit following our daughter's discharge from her third admission to the pediatric bone marrow transplant unit (PBMT), our treating physician shocked us by saying we could start the transition of some of the post-transplant care from Duke Medical Center to our home hospital, Brenners Children's Hospital. We had estimated it might be at least mid-February before we could move back home, due to all the complications. While that was definitely welcome news, we were caught a bit off guard as we had quite a bit of work to do to move out of our home away from home, The Ronald McDonald House.

But as is the case with bone marrow transplant recoveries, plans are usually subject to change, and later that afternoon a blood level for the key medication to treat Graft vs. Host Disease came back alarmingly low, and our plans were adjusted to include a Sunday clinic visit and then our usual weekly visit to the Duke outpatient clinic yesterday.

Yesterday's visit went well, and included the surprise removal of the peripherally inserted catheter in the kiddo's arm. The nurses were unable to draw any blood from it, after quite a bit of effort, and the doc said go ahead and remove it since she is not getting many IV medications at this time. The in-office removal was painless and much less of a invasive procedure than the outpatient surgical placement on New Year's Eve. This means no more daily flushing of lines, cap changes, or dressing changes, and is one more sign that she's moving toward full recovery.

Everyone is excited that the bone marrow transplant numbers are looking terrific, and that our daughter no longer has Sickle Cell Disease. She is still dealing with complications of transplant, including Graft vs. Host Disease, blood clots, temporary diabetes from the steroids, and weight loss that is concerning. Our transplant doc calls this the "honeymoon period" post transplant, i.e. looking good but there is still a possibility that GvHD could flare and cause issues in the new few months. We will continue to follow-up at Duke regularly and for emergencies, and her six-month post transplant studies, as well as follow-up ultrasound of the blood clots, are scheduled for mid-February.

We turned in our keys to the Ronald McDonald House yesterday, and brought the patient and the last carload of belongings home. There are still lots of medical appointments and follow-up treatment in our future, but everyone is happy to be at "home-home" again, and most important, all together under one roof for the first time in many months. Our big challenge now is fattening up the kiddo, but hopefully a new medication to stimulate her appetite will help with that.

We cannot thank all of you enough for the many ways you've helped support us through the hardest medical miracle we've ever experienced - the donations, the food, the cards, the gifts, the visits, the emotional support, and all the well-wishes. Sometimes it just helps to talk, and you guys have been awesome.

Love, peace, grace & Godspeed on your own life's journeys,
Lynne

20 comments:

  1. that is quite the update! i sincerely hope that Heavenly Father continues to bless your family!

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  2. Oh, Lynne, this is the most wonderful news. Welcome home-home and hugs to you and the kiddo. Let the fattening begin! (Coincidentally, that's what I yell as the beginning of holiday season).

    xoxo,

    Gracey

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  3. Really excellent news, Lynne. How lovely for you all to be going home. Good luck, and keep us posted. I think about you all very often and send tons of love across the ether. xxx

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  4. Thanks for the update. We care.

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  5. Thank you for sharing this fantastic news, Lynne! I know your beautiful daughter isn't done yet with medical checks, but to be going home early is so great. I love what Gracey wrote about the fattening! xo

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  6. Oh Lynne, so thrilled to hear! Much love to you & the Teen & yours. xo

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  7. So happy that things are moving in the right direction and you are all back home. That will definately help with the morale all around.

    bisous
    Suzanne

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  8. Many many congratulations for the Teen. And for you all. I know it has been a very long and arduous process, but I'm glad that you've weather it with grace and strength. As always, you all are still in my prayers.

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  9. Aaaah Lynne I'm so happy to hear that the better days are starting to outnumber the difficult ones. One day at a time of course, but you're all getting there! xoxoxo

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  10. So so happy to read this post. The fight isn't over yet, clearly, but the horizon is visible. Keeping you all in my prayers as you move in to this next phase. There's no place like home. XXOO

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  11. AWESOME!!! Doing the happy dance (well--best as I can) here for y'all!!
    I'm betting the Teen is going to improve dramatically being HOME!!!

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  12. This is amazingly happy news Lynne! I am so, so, SO happy to hear this news! I am sure you are all relieved and I hope that everything continues to only go up from here!

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  13. I've been quietly following your journey Lynne and am so happy to hear about this major milestone. Welcome home!

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  14. Oh, Lynne, it's so good to hear! Please forgive me for being so absent. Life here is busy, single parent, working more, separated, on and on, but pales in comparison to all you've been doing! And here you were so close to me geographically and I did not even know! I do so want to meet you some day! I think we'd have a blast. I hope the teen does well! Sounds like it's a good vibe going on with it all! I have made the decision to pull in my on-line endeavors and just focus on my oldest blog, A Mother's Journal, if you ever care to drop by! Love, Lynn www.amothersjournal.com

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  15. Wonderful news! I hope things continue on this upward trend. How exciting to read, "our daughter no longer has Sickle Cell Disease."

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  16. I'm so delayed in commenting on this--wonderful wonderful wonderful. I'm glad the Teen has you, and that you have her.

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  17. Now that's really cheered me up in my post holiday gloom! I'm so excited and wishing you all loads of luck and good health. xxx

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  18. Hi Lynne,

    Just wanted to pop by and say "Hi" ... hope your doing great and enjoying being a college student.

    Huggles

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  19. Your child no longer has Sickle Cell Disease! Wonderful words to read. Hope that your homecoming is glorious and wishing you the best, as always.

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