Friday, August 30, 2013

Upside Down

Our lives have been turned upside down again. Our family needs your prayers once again. Scott has been in the hospital for over two weeks now fighting Guillain Barre syndrome. He was airlifted to Kansas City on Sunday night and is now in the neuro ICU at KU Med on a ventilator. GBS is a very scary and crazy disease.  Basically your own body attacks your nervous system and paralyzes you.
This all started 16 days ago (which feels like 2 years ago) when Scott felt a tingling in his hands and feet. The next day his hands and feet started to feel numb and he went to the ER, but was sent home.  I remember him doing some research on the Internet and saying that he found this Guillain Barre syndrome and he thinks he might have it and that it is not good news. The next morning he had a really hard time walking and we took him right back to the doctor who admitted him to the hospital right away. They did a spinal tap and confirmed GBS. He was moved to the ICU where he started the IVIG treatment right away. His hands, arms, feet and legs continued to get worse and he lost all feeling in his extremities. The biggest fear with GBS is that it can affect your respiratory system and you have to be put on a ventilator.  Scott's respiratory function remained stable and we were so thankful. On the fifth day of the treatment he developed asceptic meningitis (which is a rare side effect of the IVIG), which made him feel horrible. He said he felt like he had the worst flu on top of being paralyzed. They were able to treat his symptoms and he started to feel a little better, but the GBS was still progressing and paralyzed him even more. By the end of the week they felt like he was stable enough to go to rehab. He had a couple of days of rehab and then last Sunday he was feeling worse. He was extremely weak and just did not feel well. We made the decision to take him back to the ER. The ER doctor felt strongly that he should be transported to a different hospital that has a better neurological department. The decision was made to airlift him to Kansas City in the middle of the night. He had to be intubated for the transport and has remained on the ventilator, because his respiratory function had declined.

So, once again our family packed up in a hurry to follow a loved one to a hospital in a different city.  We are so thankful to have family in Kansas City.  We are staying with Scott's brother and that makes things a little easier.  Scott's family has been awesome and has been here the entire time. It is times like these when you realize how important family is.  We are all hanging in there and doing the best we can to get Scott through this.

I am going to write more frequent updates on the blog.  Please keep our family in your thoughts and prayers.  We are confident that Scott will make a full recovery, but it will take time.


  1. Praying for you and your family Katrin.

  2. You and your family are in my thoughts and prayers. I found your blog from Bethany Blair Photography's facebook post, my Mom had GBS when I was about 4 and I know what a terrible thing it is.

    1. I hope your mom made a full recovery. It is just an awful disease. It is physically and mentally very challenging for the patient and family as well.

  3. Oh Katrin - I'm so sorry to hear about your husband. I'm praying for a quick & full recovery.