Thursday, September 8, 2016

New Normal or Still Recovering?

Ian has been doing OK....not great but OK. He contracted CDiff after his last hospital stay. CDiff is an inflammation of the colon caused by a bacteria which leads to watery diarrhea. He has been on antibiotics treating this and I think we are seeing an improvement. Only time will tell. In addition, Ian has been sleeping 3-4 hours a day along with sleeping all night. When we are suctioning, his oxygen levels are dropping, usually recovering quickly but this is something he has not done in a while. We have been out 4-5 times since being home from the hospital and 1/2 of those times, Ian has had problems with his in-line HME. This requires extra resistance for him to breath and he has not handled this well and required oxygen. Usually this means his vent settings need to be changed...we do have a call into his pulmonary doctor.

I am having a very hard time emotionally dealing with all of this, on top of winter approaching. Is this our new normal? Is he still recovering from the pneumonia, sepsis and now the cdiff? Only time will tell. Putting emotions into words is hard. I'm scared, angry, worried...but at the same time, I know how much I love him. Watching him fight every day, is heartbreaking while empowering. My heart hurts and feels empty today. You try not to think about where the future is taking you, especially when you know it is devastating for him. When will that time come, no one knows. All we can do is continue to make the best of every day and every minute he is here. 

His smiles don't seem to be as strong. He is not getting his tongue out as far as he was...I think his muscles are getting weaker. His energy level is least for the time being. He appetite seems to be less...again is this all a new normal or still recovering. 

Only time will tell. Sorry if this post seems to be all over the place, but that is where my mind and heart are. 


Marci Scher said...

Elena Lucini French 💜

Erika Agetstein Buchdahl Hugs.

Heather Lev Xoxo

Annelise Sullivan So sorry he's not back to his normal self yet. Praying for some improvements

Jennifer Larsen Orlando ❤

Kathy Stevens Incredible strength and love in your family.

Robin Katcoff Hugs!

Donna Lithgow Stollings ❤ ((Hugs)) to you and your whole family.

Kelli Maples Bethel Sending love to you and all

Julie Onnembo Sending you all lots of love and hugs!

Gina Cohen Big hugs & love & strength to all of you.

Jamie Nathanson Miller Love

Carrie Levin Weitzman sending love!

Rachel Solomon Teles Wow, Marci. The strength your whole family must have...

Heather Schmidt Young ❤hugs ❤ Thinking about you all....

Jessica Cohen Layman Thinking of you guys!

Sara Alima Ostrow Keeping you all in my thoughts and prayers.

Peter Degen-Portnoy Thank you for sharing even when it is tough. You all are in our thoughts and hearts.

Laurie Fox Schimmel Thank you for sharing your journey. Sending you thoughts and prayers!

Chandra Sacks Juarez Sending 💜 and positive energy your way!

Jay Weiner ❤

Rene Hurley Carfi You are all in my thoughts and prayers.

Sherri Asher Sending lots of love

Sally Weintraub Grobani Sending love and prayers and good thoughts to you all.

Tamara Jayne Flax Sending hugs your way.

Sam Rosenbaum Love and light.

Stacy Berman Lunenfeld I am always thinking of you and my heart hurts too after reading that.

Helen Weisman Dagilis ⬆what stacy said ❤

Daean Menke So hard to put into words but you always manage to convey your heart in a way that speaks on so many levels. (((( 💔)))))

Marci Scher said...

Karen Garelick Wolfe I'm so sorry, Marci. I hope he continues to improve after his latest setback. Hugs.

Keira Silberstein Keeping your family in my prayers.

Angela Arbuckle Manzi Sending love your way

Linda Lennon Frasciello You are in my thoughts

Carye George Everett Sending hugs your way and prayers.

Alison E Pascucci Call me friend. I'm here. Xo
Marci Weinberg Scher I know
Alison E Pascucci Marci Weinberg Scher and I understand if you don't feel like talking too. 😘

Samantha Gitli Schaefer Sending love and strength to all of you!

Deb Wood My thoughts are with you ..hugs to your hearts

Rachel Rosenberg Sending hugs your way. We will all get through this. That's what your village is for.

Michelle Kampler Schwartz So sorry that your journey has so many challenges. Your own mantra says it all - treasure the days...inhale and embrace it all...even the sucky days. Hugs and hugs.

Anne Polakoff King I wish you strength.

Nuchie Zirkind Thinking about your family!!

Julie Berman Katz Sending you hugs and prayers.

Connie McElroy Lippenholz Hugs & lots of love.

Pauline Church Yamin We think of Ian and your family frequently, especially when a scouting/camping event is about to happen. I admire the effect Ian had on our son and continues to. Thank you

Rena Trestman We are davening every day for Ian and the Scher family. He should continue to get his strength back and feel good.

Sandra Huller ❤ ❤ ❤ to you all!

Alicia Katznelson Broth Sending you strength, prayers, and love, Marci -- today and always.

Mary Engel Crumbacker Hugs and prayers coming your way for you and your family.

Nancy Polack Kaplan This is so difficult for your family. Prayers are with you. You have a good attitude and of course it is frustrating and traumatic. But it's a challenge you want to face everyday because you still can. Love to you all.

Lisa Reid Miller I will continue to pray for you all. Love you!

Jill Pelovitz ❤ I am thinking about you and your family. I pray you will have what you need to manage whatever comes. Your love, your honesty, and your strength amaze me.

Beverly Blickman Sending lots of L 💙VE