This has been a really hard time for our family. I can't even imagine what Scott is going through right now. It has to be unbelievably tough. He is staying strong and fighting to beat GBS. We are all very proud of him. This is challenging for the family too (even though it doesn't compare to what Scott is going through). We have been by his side 24/7 to give him comfort. It is extremely hard to see your loved one in a position like this. We all have to stay strong, so that we can take care of him. We have an amazing support system from family and friends and strangers that we have never met. People are amazing and come together in time of need and we are so thankful for that.
I have been struggling a lot with the fact that I can't be in two places at once. Our family has been split apart again and I have to deal with that. I want to be with Scott all the time, but I also have two little kids that need me. The guilt of feeling like you are never in the right place is awful. It is also so hard to not have your best friend by your side. Scott is my rock and I talk to him about everything. He is the one I go to during tough times. There are a lot of people that have stepped in now (and I am so incredibly thankful for them), but it just doesn't compare. This has been hard on the kids too. Hannah misses her daddy like crazy and Evan's world has just been turned upside down. He has been with a lot of different people in the last 2 1/2 weeks and he has not been the happiest about that. I am hoping to be able to establish more of a routine and schedule in the next week.
Scott had a tracheostomy this week and is a little bit more comfortable now. We have a pretty good system of communicating now by reciting or pointing to the alphabet and he nods his head when we get to the letter he needs. We have been spelling out lots of things. Speech therapy has worked with him on using a speaking valve on the vent for a few minutes at a time. He also has Physical therapists that work with him every day. We know that we are in the best hands possible here at KU Med and the care has been great. This neuro ICU unit is considered a "Center of Excellence" for GBS (there are not many worldwide), so we feel fortunate to be here. We have had lots of ups and downs this week, but overall I think he has been in pretty good spirits considering everything. We have to remind Scott and ourselves a hundred times a day that he WILL get better, but it takes a long time. His friend Todd (who has been an amazing support for us) found a great YouTube video of a girl telling her story with GBS. I have watched it several times now and it is so encouraging. If you want to get a better understanding of GBS or a glimpse into our world right now I would recommend to watch THIS VIDEO or THIS ONE. There is not a lot of awareness of GBS out there, because it is so rare, but anybody that has been struck by it or knows somebody that has had it knows how devastating it is. If anybody knows of another encouraging story please feel free to share with me.
We appreciate your continued thoughts and prayers. I continue to pray for a miraculous recovery like we saw with sweet Evan in January! We have witnessed it once and we will witness it again.
Great send off!
8 hours ago