I started this post last night and it was titled "Moving on up", but that changed overnight to "Enough is enough". We were all set and ready to transfer Scott to Madonna Rehab in Lincoln, NE today. I had everything packed up to move us another 3 hours north to be at the best care facility for Scott.
Overnight Scott has shown signs of infection again and his breathing is more labored. We don't know more details yet. Please pray that this is only a minor setback and that we can head up to Lincoln over the next few days. I feel so bad for Scott and I can't believe that he has had to endure so much. He has had so many setbacks and has stayed so strong through all of this. I am about to loose it, but I can't let him see that. He was so excited to move on to the long term acute care facility. It meant a step in the right direction and a change in scenery.
We made the decision to move Scott to Lincoln, NE over the weekend. After doing a lot of thinking and research we all agreed that Madonna Rehab would be the best option for Scott and our family. I have been told by many people that the after care for Guillain Barre Syndrome is extremely important and can make a big difference in the outcome of recovery. So, we are very fortunate that we have a world class facility like Madonna within reach. At first I was a little hesitant to make that move (probably a little selfish, because it means packing up the kids again, finding new housing, finding a preschool , additional costs ect), but looking back it is a no brainer. This is not about convenience for me right now, it is about getting Scott the best care possible and we are confident that we will get the best care possible at Madonna. Now we just need to get there and start moving on up!
Scott has had a few stable and good days. They work with him on vent weaning trials every day and he has done really well. He has lost 40lbs throughout all of this (pretty soon I will weigh more than him). He was so excited to be moving out of ICU today. He is a fighter and I am so proud of him.
Please keep our family in your thoughts and prayers.
3 hours ago