Wednesday, October 30, 2013

Update And The Plan

I can't believe it's been over two weeks since I have updated the blog.  It's been a busy time for us and a lot has happened.  Scott has made tremendous progress in the last few weeks.  He started walking in a walking/standing frame for the first time 2 1/2 weeks ago.Since then he has walked with three different frames and moved on to just a walker.  He started out needing a lot of help and support, but is doing very good right now with minimal help once he is up and standing (he made it 190 feet today).  They have also tried stairs with him this week.  His nerves are firing up everywhere except for his feet.  His upper body keeps getting stronger and his fine motor skills are improving as well.
Scott also started therapy on the Lokomat, which is robot-assisted walking therapy.  It is such a neat (and I am sure very expensive) piece of equipment.

The Lokomat

Scott moved to acute rehab last Saturday and has started intensive rehab (at least 3 hours per day).  They are working him hard and he is "enjoying" that.  He is doing everything he can to get better.

Scott has been able to get a pass on the weekend to leave the hospital for a few hours.  This has been so wonderful and has brightened all of our spirits.  The first time he got to leave the hospital we went over to Megan and Barry's and just hung out.  Scott requested for Barry to smoke some meat and that's what we did.  It was nice to feel like a normal family and just be together.

First outing

Last weekend I took the kids and Scott to the mall by myself.  I am sure we were quite the sight.  It was a little bit like a train. I had Evan in the Ergo and was pushing the wheelchair and Hannah was on Scott's lap (and I was wearing a big backpack).  Getting all three of them in and out of the car took quite a bit of time.  This week Scott was able to leave the hospital for Boo at the Zoo on Monday and he will be able to leave for Halloween tomorrow night as well.

The plan is for Scott to be discharged from acute rehab a week from tomorrow.  He will then enter the rehab day program.  He will still spent a good portion of the day at the hospital for all of his therapies, but he will be able to come home and stay with us after he is done with therapies.  We are all ready for this next step.  We had to find a new apartment that is wheelchair accessible and will be moving into that next week.  We are going to hire two of our favorite nurses from the hospital to help with the kids and Scott's care.

Monday, October 14, 2013

Evan 7, 8 and 9 Months Update and Scott 2 Months

Oh what a year it has been.  Evan, you are 9 months old today.  I have neglected to post your updates the last couple of months with everything that has been going on and everything is a blur to me.  Your world was turned upside down too on August 14th when daddy went to the hospital.  You had just started some separation anxiety and did not like to be away from me.  You were passed around to a lot of different people for a while and had no schedule or routine.  It was really hard for me knowing that you were not happy.  We have a much better routine now and you are a lot more well balanced again.  You are still not a good napper, but your night time sleep has finally been good.
What else have you been up to over the last few months?  You are sitting completely unsupported.  You are finally rolling over both ways and get around pretty good.  You get on all fours and want to crawl so bad, but are not quite there yet.  You can move to a sitting position from your back.  You have 5 teeth and I am pretty sure you have another one coming right now.  Your hair is really starting to come in.

You are such a sweet little boy and I cannot believe that you are 9 months old now.  You are getting so big and have done so wonderful and we are very lucky that you are with us.  There is not one day that goes by that I thank the Lord for your healthy heart.  It has been a challenging year for our family, but I take one look at you and know how blessed we are to have you.

7 Months
8 Months
Big sister always wants to get in on the fun
9 Months

Today also marks the day that Scott has been in the hospital for two months.  It's been a long two months, but I am just so happy that the worst is behind us.  I will never forget the really bad days, but my mind does block out some of the bad stuff and I am focused on the positive developments.  It wasn't very long ago that Scott was on a ventilator and not able to communicate, move anything besides his head (no facial muscles though) or to close his eye lids and was really out of it.  Today his personality and sense of humor are back, he can move his arms and upper body and he was able to stand between the parallel bars with the help of only one therapist.  We have no idea how much longer his recovery will be, but we are so hopeful that it will go faster than expected.  He is working really hard and pushing himself.  He also really wants to win the outstanding patient award and I think he may start a campaign soon:)

His sticker says "World's best patient" and Hannah's says "Nurse in training".  These two make quite the team.

Saturday, October 12, 2013


Oh, how I love the word progress right now.  We had a big week and Scott made some great progress.  His arms are improving and getting stronger, but because his muscles were so atrophied they are still very weak.  He has been doing a lot of strength training and his hands are getting better as well.  Another thing he worked on this week is transfers from the bed to the wheelchair and he has successfully mastered that now.  This is a huge step and we are so excited for him.  He no longer has to use the lift to get out of bed and can just do it with a slideboard.

Pool therapy was also very good this week.  Scott was able to take his first steps in the water on Thursday!  It is amazing to see what he can do in the water.

They have also worked a lot on standing with him.  He has been in the standing frame every day and has made it for 20min.  He is starting to feel a little weight on his lower legs when standing.  He still can't move them, but starting to feel the weight is a very good sign.  Yesterday he stood on the parallel bars for almost 2 min.  All of this is very exhausting for him, but he is so motivated and keeps pushing through it.

Hannah was able to help with therapy again this week and they played bean bag toss and bocce ball while Scott was in the standing frame (it keeps his mind of the hard work he is doing).  During recreational therapy they played memory.  Hannah was very proud that she "won everything" they played that day.  The occupational therapist is trying to reserve the kitchen for next week to bake cupcakes with Scott and Hannah.  This will be great fine motor skill therapy for Scott.

We are staying on long term acute care until next Tuesday and then we will most likely move downstairs to acute rehab.  We will miss our "family" of nurses and therapists up here, but we are excited to start another chapter down at acute rehab.  Scott's nerve pain is still really bad, but the medications are keeping it under control.

Matt and Casey are coming into town this weekend and we are excited to see them.  I can't believe we started this journey almost 9 weeks ago and we haven't been home in 7 weeks!  We miss being home and seeing our friends, but we just feel so lucky that we can still be together as a family during this time.  I can't imagine not being together.  We have all adjusted well to our lives in Lincoln.

Friday, October 4, 2013

No Strings Attached

Well, almost no strings attached.  Scott started out with a trach, an IV access, feeding tube and catheter. He is down to only having the feeding tube left.  Everything else has been removed successfully. He will need the feeding tube for a little while longer.  He needs to gain some more weight before they can take it out.  He still gets 1,500 calories through the tube at night plus what he eats during the day.  He has gained a few pounds since last week, so I am doing my job well by bringing in lots of afternoon treats.  The only problem is that I pick up a treat for myself as well and I don't need to gain weight like he does:).
Scott has been a little disappointed that he is not seeing more progress and that his legs are not working yet.  He has been in excruciating nerve pain, which is terrible, but hopefully a good sign that nerves are regenerating and waking up.  He started pool therapy this week, which was wonderful.  Scott was really exhausted after it, but he felt very comfortable in the water.  He was able to move his legs some in the water!  I am always amazed by all of the tools, tricks and equipment that all the therapists have.

Scott also had recreational therapy for the first time this week and they brought in some stain glass window display for him and Hannah to paint (once again I am so happy that they incorporate Hannah into his therapies).  They had an adapter for Scott's paint brush and he was able to do it.  It was great fine motor therapy for him and he had fun with Hannah.  We also played Bingo with volunteers.  It was just our family and the volunteer yesterday and it was a great afternoon.  It felt like we were doing something normal (not that we play Bingo all the time, but it just felt like we were doing something as a family).  Hannah loved playing Bingo and was super excited about the random prizes they had.

I really think Hannah may have found her calling.  She wants to be a nurse when she grows up and she is doing an awesome job right now!  She is a pro at navigating the lift that gets Scott out of bed into the wheelchair.  She is so loving and nurturing to him that it just melts my heart to watch her.  Everybody up here on Scott's unit knows Hannah by now and she gets a new "Nurse in training" name tag every time she comes up to visit.

Scott is almost ready to move downstairs to acute rehab since he doesn't need that much medical attention anymore.  Once he is downstairs he has to tolerate even more therapy.  It will be another nice change of scenery to get down there even though we are really comfortable up here on long term acute care and have gotten to know the entire staff.  Everybody has been so wonderful.  Scott is pretty confident that he is everybody's favorite patient:).  It is good to see his sense of humor come back.  He has been such a trooper throughout all of this and has remained positive (he doesn't remember the really bad times in ICU).  His facial muscles are showing a little bit of movement and I hope his smile will come back soon.  I miss seeing that and I know he wants to be able to smile at his kids so bad.

Nurse Hannah made a cake for daddy last night to make him feel better.  She added a lot of toppings that she thought he would like.  It has sprinkles, kit kat, snickers, candy corn and sour gummy bears on it.  Scott was touched by the gesture, but not too excited to try a piece.  I think it looks pretty fabulous.

Evan snuggling with daddy
Love this little boy (I wish his sister let me take some pictures of her).  Thank you Debbie for the adorable onesie and the cake baking supplies.