Friday, September 6, 2013

One Day At A Time


Every day is a new day of hope for us.  Hope that Scott will have a good day, hope that there are no complications and hope that he will start to see some improvements.  A few days ago we had another setback and Scott showed signs of an infection, a collapsed lung and fluid in his lungs.  They did a procedure to get the fluids out and started to treat the infection with antibiotics.  Thankfully that took care of the setback for right now.  He remains in the ICU to be monitored.  The doctors are confident that the Guillan Barre has plateaued.  Nobody knows how long the plateau phase will be and it could be weeks before starting to see any improvements.  The next step will be to transfer him to a Long Term Acute Care Hospital (LTAC) to manage the ventilator and start the weaning process.  He will receive some Physical Therapy, Speech Therapy and Occupational Therapy while at the LTAC, but once he graduates from there he will need to go to aggressive rehab.
I can't even begin to describe how terrible of an illness this is and it is so hard to understand how you can go from being in the best shape of your life to being paralyzed on a ventilator in a matter of days. I hate seeing my best friend like this and I miss him.  I wish I could make him feel more comfortable.  The mental aspect of this illness is extremely hard.  I was so happy the other day when Scott spelled: I am going to get better starting now.  I can't imagine being trapped in your own body and not being able to communicate.  I feel so guilty that I get to leave the hospital, take a breath of fresh air and see our kids and he doesn't.  Our kids have given me the strength I need right now.
I know way more about the human body, medical terminology and medications than I ever wanted to know after being in the hospital with Evan for almost a month and now this.  It has been a rough year for us, but I am also always reminded of how great of a year it's been when I look Evan.  I know right now it is hard for me to see the light at the end of the tunnel, but I know that we WILL get there and he WILL get better.
We appreciate all of the prayers and support that we have received from family and friends.  We are very lucky to have such an amazing support system.  I can't imagine going through this without you guys!

10 comments:

  1. Katrin, I simply cannot image. I am so, so sorry you are going through this..... again! You are amazingly strong.

    Dena

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    1. Thank you Dena. It is amazing to see what strength you find that you never knew you had!

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  2. Continuing to pray for you and your family, specifically healing for Scott and incomprehensible strength and peace for you!

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    1. Thank you Bethany! When this is all over we will need some more family picture!

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  3. Praying for you all!! Please let us know what you need!!

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    1. Thank you Julie! I am sure I will need some help when we return.

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  4. So many prayers for your family, Katrin!

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  5. I too, had Guillian-Barre Syndrome, diagnosed on Christmas Day, 1996, with a 22 month-old and a 1 month- old at home. I know how rare and how awful it is, and am praying hard for your husband. I recovered 100%, so keep your chin up!

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    1. Thank you for reaching out. I always like to hear the encouraging stories!!!!

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