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Angry and Heading to Hopkins! Oct 19

Well, we got clears from the Infectious Disease and Cardiac doctors that Kevin is very stable.  The plan is to keep doing what they’re doing, ween him off the heart medications, and take a CT scan of his body tomorrow to see how the chest tube drainage is working.  They also want to do a drain via needle of the fluid in his stomach to give him some relief there, and to start him on TPN (IV) feedings because it is too risky right now to do regular tube feedings.

Why I’m angry?  Because the oncologist on call this weekend feels there is nothing more that can be done (on THEIR side), and so after speaking with the internal medicine doctor, we’re going to get him transferred to Hopkins ASAP.  The thought is that LGH just doesn’t know enough about Kevin’s case/condition to be able to adequately treat him beyond what they have already provided.

So, first thing tomorrow, I’ll be on the phone with Dr. Thornton to get the transfer starter.  Pray that our COBRA application comes tomorrow so we can get this set up ASAP as bills are escalating fast and will be a nightmare to get sorted through.

Also pray for continued stability for Kevin to be able to handle the transfer to Hopkins tomorrow. Be with us as we pack and get ready for the trip, and that we’ll have a place to stay.

Thanks for your continued support-WE’RE NOT GIVING UP!

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5 Responses

  1. 1
    Mrs. J 

    I’m glad you’ll be back at Hopkins where they are more familiar with the ‘big picture’ and where I’m sure you will feel more confident that the doctors are able to deal with the problems. You are both now on several prayer chains in Illinois, and I hope you don’t mind that I have been sharing your blog with friends and relatives there.

    I was up in the barn working on the tractor yesterday, and just seeing all your things stacked against the wall made me stop to say another prayer for you and Kevin.

    Much love,
    Mrs. J 🙂

  2. 2

    sounds like a better day today all around…
    I will pray tonight that all goes well through the night and that tomorrow-you will get the news you need-and Kevin will be on his way to Hopkins!!!!!

    Again, Brenda-I don’t know how you do i….Your story, as sad and terrible that it is that kevin is suffering-is truly inspiring….


  3. 3

    Remember stay positive stay strong and he will overcome.
    I’m glad to hear that you are going back to Hopkins where they are more familar with Kevin’s disease. The oncologist at LGH probably never dealt with an angiosarcoma patient they just don’t understand the nature of this disease.
    Don’t ever give up remember me they gave me 2 weeks to live that was a year and a half ago.
    I will continue to pray for you both

  4. 4
    Melanie E. 

    We are praying for you!

  5. 5

    Hi Brenda
    You don’t know me. Kevin doesn’t really either. We used to see eachother around years ago back in the day in Winnipeg. I have followed your blog daily. I run to see how things at any chance I get. I keep praying that I will log on to find that there has been a miracle. We are praying for you both. I am so in awe of your faith and how hard you are trying to stay strong. We know it cannot be easy.
    Just know that there are many people praying for you, Kevin and your families.

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