Medical Update

So it has been a while since we have given you a medical update on Ian. He is doing ok. We did just recently have a scare where we thought he had a trach infection. The culture came back growing lots of stuff, all of which were things they were expecting to come back with. Many thoughts and emotions were going through our minds, knowing he may have one and what that could or could not mean. 

He is becoming increasing harder to understand, especially at night when he is more fatigued. His eyes have been one of his greatest tools lately in communicating. 

Increased pain has been something else we have been struggling with. He has been getting his break through pain medicine more often, sometimes more then once a day. So when his Gilchrist team meets next they will discuss his and most likely increase his methadone. 

Eating has been something he has not been doing so much of. We have started a food journal to see what his intake really is knowing that he does not need what you and I would need. Laying in bed and not exerting yourself does not require much but does it require more then he is getting. Once we get the results from the food journal, if he is not getting enough, Brian and I will then have to decide if we are going to just let him continue to eat the way he is or going to start some tube feedings. Both have their pros and cons and this will be yet another difficult decision we will need to face.

Last night, Ian needed to get out some frustrations so he yelled, I HATE THIS DISEASE....we could not agree with him more.


Comments

  1. Lisa Reid Miller
    Oh no! Marci, my prayers will increase for peace in your house!

    ReplyDelete
  2. Erika Agetstein Buchdahl
    Hugs

    ReplyDelete
  3. Donna A. Lewis
    I'm yelling "I hate this disease" for you guys.

    ReplyDelete
  4. Janine Frier
    Thinking of you and your family, Marci.

    ReplyDelete
  5. Janine Frier
    Thinking of you and your family, Marci.

    ReplyDelete
  6. Carye George Everett
    Praying for you! I here when ever you need me!

    ReplyDelete
  7. Kelli Maples Bethel
    We are all screaming "I hate this disease" with you guys too!! sending prayers and love

    ReplyDelete
  8. Kelli Maples Bethel
    We are all screaming "I hate this disease" with you guys too!! sending prayers and love

    ReplyDelete
  9. Stacy Berman Lunenfeld
    My heart aches for you! Especially thinking of how supportive you have been for us today!

    ReplyDelete
  10. Kendra Bober
    So much love to you all. So much...

    ReplyDelete
  11. Alyssa Postman
    Sending my love to you all!

    ReplyDelete
  12. Alyssa Postman
    Sending my love to you all!

    ReplyDelete
  13. Emily Michelson Levin
    Continued thoughts and prayers for you and your family.

    ReplyDelete
  14. Lauri Harf Greenberg
    Always thinking of you!!! Xoxoxo

    ReplyDelete
  15. Sara Alima Ostrow
    You all are in my constant thoughts and prayers.

    ReplyDelete
  16. Sherri Sibel Thomas
    I hate this disease, for him, too!!!

    ReplyDelete
  17. Sherri Sibel Thomas
    I hate this disease, for him, too!!!

    ReplyDelete
  18. Lisa McCarville D'Antonio
    (((HUGS))) Love you 'lil

    ReplyDelete
  19. Julie Egleston
    I know these things must be difficult to share at times but thank you for doing it. I hope by writing it all down it helps. Although I'm sure there are many days and nights when nothing helps!

    Hugs!

    ReplyDelete
  20. Stephanie Rabinowitz
    Love you all xoxo

    ReplyDelete
  21. Steve Lunenfeld
    I am humbled by your support for others while you have such grace in your care for your family.

    ReplyDelete
  22. Sherie Bober Rubin
    My heart aches. Thoughts to you all

    ReplyDelete
  23. Karen Lippy Maimone
    All of you are constantly in our prayers. Sending along lots of love for each of you and sharing Ian's hatred of a horrific disease.

    ReplyDelete
  24. Rachel Schreiber Levitan
    Sending hugs. Not very effective, but it's the best I can do.

    ReplyDelete
  25. Harry Blacker
    Prayers and Love to you all!!

    Karen Schmidt McClelland
    i hate it too.

    Laurie Rubin
    Continued thoughts and prayers for your little boy and family

    Carol Zika
    so sweet. He is a real trooper.

    Irina Brusilovsky Goldsmith
    Hugs

    Jamie Nathanson Miller
    You go Ian, yell. Hugs.

    Michelle Kampler Schwartz
    Love

    Jennifer Lipchin
    Sending hugs and prayers your way.

    Mindy Hammerman Lipsey
    Thinking of you. I hate this disease too.

    Alexandra Kaplan
    Thinking of you.

    Marlene Ettlin
    I'm so sorry that all of you are going through this. Sending hugs and prayers.

    ReplyDelete
  26. Lara Turkel Fruman
    Thinking of Ian and your family, today and everyday:)

    Britta Hubbard Hoffman
    Thinking about you guys daily !

    Alicia Katznelson Broth
    We all hate it, too, Ian. Yell it for all of us.
    We love you, though.

    Sharon Kinstler Selko
    You are all so strong and I HATE the disease too. Hugs to everyone

    Sandra Huller
    love

    Debi Gersh Van Camp
    Hugs

    Traci Kodeck
    XOXOX

    Eden Stotsky-Himelfarb
    Sending hugs and strength your way.

    Leslie Malsbury Old
    Thanks for sharing. My heart goes out to you and your family.

    Faith Feldman
    Sending hugs and love!

    Dara Schapiro Schnee
    Thinking of you all daily. So hard especially on Ian.


    Sharyn Rosenberg Stein
    you are all in my heart and prayers

    Sheri Knauth
    Your sharing nature allows people to see your amazing world as mother, wife and person. Thank you. Sending hugs and love.

    Janice Orsburn
    Love you all

    Julie Onnembo
    Hugs and prayers.

    Lanaye Hoover
    Thinking of you!!!

    Carole Miller Glick
    Sending you lots of hugs. You are so amazing!

    Katie Cullen McGoey
    I feel like any words I might ever share would be so woefully inadequate, but please know I pray for you all so often, wishing you peace and healing relief for Ian and his health challenges, though I know this stupid disease doesn't allow for that. My heart breaks for what you go through and yet my heart is so warmed by what you share with us. Blessings and love to you and your family. SLAM, as they say. Lots of it.

    Brenda Bforsma Hanson
    Sorry that you all are going through this all. Our thoughts and prayers are with you all and especially for Ian. Gentle hugs.

    Peter Degen-Portnoy Thinking of you all daily.

    Franny Lerner hugs to you all. Feel the love that is going out to you all.

    ReplyDelete
  27. Barbara Pozen Cooper
    Love you, love Ian, love all the Schers!

    ReplyDelete
  28. So much love to Ian, Becca and all the Scher Family. xoxo

    ReplyDelete

Post a Comment

Popular Posts