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Tuesday, January 27, 2015

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.


31 comments:

Anonymous said...

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

Anonymous said...

Michelle Bar-av
Love you all

Anonymous said...

Erika Agetstein Buchdahl
Hugs

Anonymous said...

Tamara Jayne Flax
Hugs

Anonymous said...

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

Anonymous said...

Heather Lev
XOXO

Anonymous said...

Janine Frier
Thinking of you and your family, Marci.

Anonymous said...

Janine Frier
Thinking of you and your family, Marci.

Anonymous said...

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

Anonymous said...

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

Anonymous said...

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

Anonymous said...

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

Anonymous said...

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

Anonymous said...

Alyssa Postman
Sending my love to you all!

Anonymous said...

Alyssa Postman
Sending my love to you all!

Anonymous said...

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

Anonymous said...

Lauri Harf Greenberg
Always thinking of you!!! Xoxoxo

Anonymous said...

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

Anonymous said...

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

Anonymous said...

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

Anonymous said...

Lisa McCarville D'Antonio
(((HUGS))) Love you 'lil

Anonymous said...

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!

Anonymous said...

Stephanie Rabinowitz
Love you all xoxo

Anonymous said...

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

Anonymous said...

Sherie Bober Rubin
My heart aches. Thoughts to you all

Anonymous said...

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.

Anonymous said...

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

Anonymous said...

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.

Anonymous said...

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.

Anonymous said...

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

Kelly O'Connell said...

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