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Posted 2016-10-07T23:42:11Z

Week's end update

Dad is stable and was moved out of the ICU, back to the transplant floor, a week ago. Throughout the week, sores that he'd had in his mouth have grown and are now bleeding ulcers that fill his mouth. It causes him a great deal of pain and, based on testing, it's been concluded that they are a result of erythema multiforme - a reaction to medication. The issue is they don't know which medication. They suspect it's the antibiotic being used to treat the CMV infection, which is really strong and can be toxic, but seems to be the only drug that he's not resistant to that can treat the CMV. The hope is that the mouth sores are self-limiting (and will go away with time), but if they are related to the medication, they can't take Dad off of it. Dad had tested negative for CMV twice, but then had a positive test this week, so he must remain on the medication. He's being given pain meds to manage the pain so he can eat and sleep, but we're hopeful the sores can resolve. There's no medication that can get rid of them, but he has been given a mouthwash that helps to numb his mouth.
Besides the CMV, it appears Dad has a fungal infection in his native lung that has progressed into a ball that has created a small hole in the lung. He started a new anti-fungal medication two days ago to hopefully treat and get rid of this.
Today, Dad was supposed to have a minimally invasive bronchoscopy to wash out his lungs and get some cultures from those washes. However, he had a low-grade temperature so it was postponed. The more invasive bronchoscopy (I mentioned a couple of weeks ago) has been indefinitely postponed, for now. The doctors still think Dad has an infection they haven't caught, which is why they want to get the cultures from washing out the lung.
We are going on week 7 of Dad being here in the hospital this time, and 9 months since the original transplant. He's only been home for 2 weeks and we are so eager to get him back there. We are so grateful for this hospital and it's excellent care, but the healing that comes from being at home (and getting Mom's cooking) can't be matched. We are praying that they figure out some answers soon and that Dad's mouth heals - it is so painful for him and it's awful to see him suffer, especially considering all he's been through. We are so grateful that he has such a strong spirit and an unbelievable amount of fight in him. We're hoping for a low key, restful weekend for Dad.
We hope that all of you in Hurricane Matthew's path are safe and OK. Thank you all for checking in on Dad this week. I will post another update when we know more.

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Comments (4)

  • Patricia Fraley
    Patricia Fraley

    May God continue to bolster you all with the strength & positivity even when weary. May the road become smoother for you all in the near future. Many prayers of HEALING and HOPE being sent your way. Pat fraley

    3 years ago · Reply
  • Jacqueline Pikulski
    Jacqueline Pikulski

    Thanks for the update. Praying that things start turning for the better soon. Keeping you in my prayers!

    3 years ago · Reply
  • Sandrine L Baker
    Sandrine L Baker

    you are in our daily thoughts.. What an amazing man you ar Don.. there has a to be a light at this painful tunnel. All our best wishes for a speedy recovery and destination home.. love, Jim and Sandrine

    3 years ago · Reply
  • gretchen getsinger
    gretchen getsinger

    My heart is filled with prayer and the joy of hope.

    3 years ago · Reply