Message from Scott

Scott wanted to reach out to everybody and asked me to type a message.

I wanted to start by thanking everyone for the amazing outreach and support.  Katrin and I are truly humbled by the generosity of both friends and strangers.  I read about Guillain Barre Syndrome before I was even diagnosed and I knew if I held out and did not lose my respiratory function that the recovery could be pretty fast, but now I know I have a long road ahead of me.   I was never so scared as the day they decided to intubate me.  It was my worst nightmare coming true.  It was a rough three weeks in Kansas City.  Thankfully my mind has blocked a lot of that out and I don't remember all that much.  I feel like that was not me in Kansas City, but a sick sick person.  On a good note I have come to Madonna Rehab in Lincoln, NE and they are changing my life. I am getting great physical therapy, occupational therapy, speech therapy and respiratory therapy.  I am finally comfortable with sharing a picture of me.  Up until this point I could not stand to see myself in the mirror as I looked like a very sick person.  For those of you who do not see me on a regular basis.  

Here is a picture of before and a picture of me after I have lost 50lbs (Those are Katrin's sunglasses. She made me wear them, because I was going outside for the first time in over 6 weeks).

I have a long road ahead of me, but I am a very motivated person and I am going to walk out of here.  My motivation is my beautiful wife and my kids.  They visit every day and Hannah has become an honorary nurse (she is very known around the unit).  Even though I cannot smile at them (my facial muscles are still paralyzed),  hold Evan or chase Hannah around I still feel like I am finally a part of their lives again.  Katrin and the kids live in an apartment just a few miles from the hospital.  Katrin does an amazing job splitting time between the kids and the hospital. 

I am hoping to walk again by November or December.  My voice is stronger every day and I have almost full range of motion in my arms.  Unfortunately my hands have not come back, which is really hard for a guy that texts a 1000 times a day.  My quads have woken up, but the rest of my legs have not.  It's amazing they can stand me up in a frame and I cannot tell if my feet are on the ground or not.  I have absolutely no feeling. 

In the end with an amazing family, amazing siblings, dedicated parents and great friends I will walk again and the old Scott will be back.  

Big Days

We have had a few big days around here.  Last Sunday night they pulled the ventilator out of Scott's room.  It was such a big moment that I had to take a picture of it.  We have heard from several respiratory therapists, nurses and the doctor that Scott got off the ventilator in record time.  We are very proud of him for that.  Once they were able to put the speaking valve in and leave the cuff deflated his anxiety was gone and he turned the corner very quickly on his breathing.

Bye bye ventilator.......I hope we will never ever have to see you again

Scott has been working hard during his physical and occupational therapies.  All the therapists like to work with him, because he is so determined and motivated.  His arms are moving pretty good now and the movement is a lot more controlled.  His hands are still weak and uncontrolled, but they are getting better every day.  I love that they have incorporated Hannah into his therapies and let her help (she had to toss a beach ball to him while he was laying on a table at a 30 degree angle).  One of our favorite nurses let Hannah help the other day too.  Hannah was beyond excited to have "jobs" at the hospital.  She helped her wash Scott's compression stockings and she scanned the medications.  She then made Hannah a name tag that said Nurse in training.  She is very proud of it and has worn it every day now. 

Hannah now says that she wants to be a nurse for Halloween and a nurse when she grows up:)

Scott saw himself in the mirror for the first time this week during therapy.  He couldn't believe how skinny he looks and how long his hair had gotten and thought he looked like a clown.  So, he wanted to shave his head.  He does look a lot more like himself again (minus 50lbs).  

Wednesday was another big day.  He was upgraded to a general diet after another assessment by the speech therapist.  No more ground up food!  He requested a Chipotle burrito for lunch yesterday and ate half of it.  It is good to see his appetite come back a little bit.  Nothing ever sounded good to him up to this point.  He still has the feeding tube on at night to get some extra calories.

Wednesday evening was big, because they finally felt it was safe to pull the trach!  It had been more than 3 days since he needed to be suctioned and his lungs sounded clear, so it was pulled.  It was actually quite uneventful. 

I just finished reading "Happily Ever After" by Holly Gerlach.  She is the girl in the YouTube video I posted before.  The book tells her story with Guillain Barre Syndrome.  I couldn't believe all of the similarities.  It felt like I was reading our own story.  If you have any free time and want another glimpse into our current life I would highly recommend reading her book (it is available on itunes for $3.99).  

The Old Scott

We have had a good week and it is so great to see the old Scott shine through again.  Scott has made a lot of improvements since I posted last on Tuesday.  He is still getting over pneumonia right now and is experiencing a lot more nerve pain (even to the touch), but he has been off the vent for 48 hours, has had a few meals and got a shower.
Tuesday afternoon they tried a trach mask for the first time.  They disconnected the vent for that and only gave him humidified air and oxygen.  He did really well for 2 hours.  The next day they put him on the mask for 7 hours and he still did great.  On Thursday they just put a cap on the trach to see how he would do and he is still on it.  Everybody has been super impressed with how well he is handling the vent weaning.  If he continues to do well on it they will move the vent out of the room by Sunday and then potentially pull the trach by next Friday.  This is such a huge step.  Scott's anxiety has been so much better since they haven't had to put the trach cuff back up.  He is doing so good with talking too.  It still wears him out and sometimes it's still hard to understand him, but I also feel like he is making up for lost time.  I was reading the doctors note the other day (this doctor rounds at 4:30am, so I am never here and just have to catch up on his notes when I get here) and it said that the patient is very talkative.  Ha!  That made me laugh.  The old Scott is back (he has also been interested in watching a little football, which is a big step)!!!!!
He has had a few meals of ground up foods.  He is not very keen on that, but I say you can't be too picky right now:).  The doctor really wants him to gain some weight, so they are increasing his tube feeds.  Gaining some weight would really help him to get some more strength.
He was able to leave his room for the first time on Wednesday, which was really nice for him. Since then he has received a power chair and can navigate it pretty well on his own.  Now that he is not hooked up to the ventilator it is much easier to leave the room.  It still is quite the process to get him into the chair and that is very tiring and painful for him.
Scott has had a lot of questions about his time at KU Med.  He does not remember much, which is probably a good thing.

My mom has been here for almost a week now and has been a big help.  She has been helping me sleep train Evan.  He is taking to it pretty well. I am hoping that before she leaves he will sleep through the night pretty consistently.  The kids have been up to see Scott every day.  Hannah has handled it so well.  She is really sweet with Scott and holds his hand and cuddles with him on his bed.  She has watched and helped with some of his therapy.

Here are a couple of Hannah stories.  Hannah was playing princess the other night.  She was wearing 3 dresses, two of my shirts, a hooded towel on her head and my shoes.  Se also talks with this british accent when she plays princess.  She then decided to put long strips of scotch tape all over Evan's head, so that he has long hair and can be Rapunzel.  He pulled it off pretty quickly.  Poor little guy (and of course I let her do it)!

We were in the elevator the other day and she was looking at all the buttons and telling us all the numbers and then she spelled all the words she could find.  She spelled H-E-L-P and then sounded out like she was reading the word she just spelled and said TELEPHONE, because the help button has a picture of a telephone next to it.

Another first day of preschool (third preschool for this year)

Watching daddy's therapy

Swinging in the park

Moving On Up

I finally feel like this blog title is appropriate.  We have seen some nice improvements over the last couple of days.  Scott looks stronger and better every day (not quite as sick anymore).  It is so good for his mental state to see some improvements (even if they are small).  The mental aspect of Guillain Barre Syndrome is almost as hard as the physical.  He went from being completely healthy to being completely helpless and on a ventilator in a matter of days.  I can't imagine what that feels like.  The fear of the unknown and fear of not being able to breathe on your own has to be just terrible.
Scott can now move both arms a little bit.  His left arm has more movement, but his right arm is actually stronger.  We have also seen a little bit of wiggling with his legs.  He is also getting really good at talking with the speaking valve.  His voice gets stronger every day.  No more reciting the alphabet.  Thank goodness! They have also started aggressive vent weaning.  We are so excited about this.  It will be a huge step to get Scott off the ventilator.  They will be ale to do so much more therapy with him once he is weaned.
He had a swallow study done earlier today and it went well.  They are going to try a little bit of pureed food with him tomorrow.  Lots of good things happening.  He is starting to experience more nerve pain.      It sounds like that is a common thing with GBS and the pain can get pretty excruciating while the nerves are regenerating.  I am hoping that he will not experience that level of pain.
We are so thankful for all of the prayers, help and support we have received.  We have a very long road ahead of us and wouldn't be able to do it without the help we have received from family and friends.

The kids and I moved into an apartment yesterday and Hannah started preschool today.  I am excited to get a little bit more settled and establish more of a routine.

One Month Ago

One month ago today Scott was admitted to the hospital (today is also Evan's 8 months birthday).  What a crazy ride it has been. We have covered four hospitals and three states. Our lives have been changed forever.  Scott was transferred to Madonna Rehab hospital in Lincoln, NE on Wednesday.  It is a step in the right direction and we are very thankful for that.  I know that we will still have setbacks and hard days, but knowing that Scott was able to get out of ICU and move to a long term acute care facility is good news.
I brought the kids up to the ICU the day he was discharged.  It was great for both to see each other.  I was worried about how Hannah would handle the situation, but she surprised me and handled it like a champ.  She was quite intrigued with everything at the hospital.  She has been asking lots of questions about why daddy can't talk and why he can't move, but she is OK with all of my answers.  Evan just lit up when he saw Scott and it was priceless.  It was a very emotional moment to finally see Scott with the kids.  Now that he is out of ICU I will be able to bring them up more often.  I think it will be the best therapy he can receive!
Scott receives a total of 2 hours of therapy every day.  He has two 30min Physical therapy sessions, 30min of Occupational therapy and 30min of Speech therapy.  This really wears him out (but he still doesn't sleep good at night).  We feel really good about the decision we made to come up here.  The staff is wonderful and they have a lot of experience with Guillain Barre Syndrome (they see about 50 cases a year from all over the country).
Most of the steps are going to be small now, but we had a huge step this week by putting in a speaking valve on the trach.  Scott has been practicing hard on speaking with that and his voice gets stronger every day.  I know it has to be a big relief for him to be able to communicate better.  It tires him out to talk, but it is nice knowing that he can be heard!  We have seen a little bit of movement in his right arm.

Today has been tough day for him, so please keep him in your thoughts and prayers.  Praying that tomorrow will be a good day again.

My mom is coming in tomorrow to spend a few weeks with us.  I am excited to see her.  It will be nice to have an extra set of hands to help.  I also found an apartment that we will be able to move into on Monday.

Enough Is Enough

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.

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!

Hard Times

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.