Monday, June 13, 2011

Ice Cream never tasted so good!!!

Oh the sweet taste of cherry ice cream!!!  Dad finally got to eat something!!  After he had walked around the pod a few times, Dr. Sugarbaker said he deserved a yummy, refreshing snack! You would think he would look happier?!

Today, he got to have "real" food!  If you want to call Mac and Cheese real.  He wasnt entirely thrilled by it, but he did get to chase it down with some chocolate ice cream!!   Later, for dinner he got to have chicken noodle soup and a grilled cheese sandwich!  I can only imagine the joy!! 

Dad is a little hard to cheer up lately!  He doesn't realize how well he is doing, and so he can't see his own progress!  Any words of encouragement would be apprecaited!!

We love you Dad!!  You have no idea how amazing you are doing!!  Keep it up and we will BBQ for your b-day! :)

Thursday, June 9, 2011

Crazy Field Trip?!

So, the last few days have been some we wish we could do over....I am sure there would be some things done differently! 

Yesterday around 11:00, we were informed that dad was once again going to be moved to the Spaulding Rehabilitation Facility.  Needless to say, I was NOT happy!!!  I knew that it was a bad idea, but, being across the country from the situation, I couldn't really stop them.  The "floor" doctor, or the doctor that does rounds on the floor and knows really nothing about dad or his case, gave the go ahead to move him to the rehab and that is what was done.  No one noticed that he was acting strange and very tired.......all the nurses figured he needed a nap.  Well, just 3 hours after being moved, dads O2 levels spiked and he needed help breathing. After that evening, he was back AGAIN to the ICU at Brigham and Women's Hopstial!  Someones I's were not dotted, and someones T's were not crossed, and dad ended up back on the ventilator for the night!! 

This morning, he is off the ventilator, and just got up and walked around the ICU.  No answeres yet on what caused his O2 to spike, but I will make sure to update as soon as we have any ideas! 

Monday, June 6, 2011

Behind on Updates.....LONG POST.....

I have been just terrible at updating the blog since I got home from Boston.  Going there and leaving there were two of the hardest things that I have ever done, and returning to this blog reporting things from a distance has been an emotional trial for me.  Being there, in the middle of it all, somehow made me realize just what a huge mess we had on our hands, both there in Boston and at home!!  Nothing can prepare you for the nasty thing that is cancer, nor what it can do to people involved! 

I always have seen my dad as one of my very best friends.  He is my hero and this situation has made me realize more and more what an amazing man he is!  He does not deserve any of this, and watching him struggle through all of this has been heartbreaking to me.  So, I will do my best to keep my emotions in check and keep this blog updated, so that one day, hopefully soon, my dad can read this like a journal and realize the miracle that is his life!!!

Since my last post they had moved Dad to a step down unit.  He was making HUGE progress in the few days that he was in that unit.  Wednesday, the 25th, they decided to move him to a rehabilitation facility in Cambridge.  We had heard amazing things from the doctors about how great this facility was, and so we were excited about the step forward.  We arrived at Spaulding Rehab Center at about 7:00pm that evening, and were checked into a room with a roommate....not ideal in any sense, but this was AWFUL!!  The little man next to dad was obviously a very impatient man, and instead of ringing the nurses button, he would kick his bed and yell!  He began throwing things after we had been there a while.  I was very uncompfortable with the set up and expressed my concerns to the nurse.  Not much was done about it that night, and Dad obviously didn't get any sleep that night.  The next morning I was more than irriated!  I insisted that he be moved, and shortly after, they did find his roommate a new room.  I had anticipated things going a little more smoothly after that. 

The doctors and rehab team took turns coming in and meeting dad, and getting aquainted with his case.  But nothing was being done.  He sat in bed that whole day, and the next moring he told me he was having trouble breathing.  I finally got the nurses attention, and she called the doctor.  To shorten this story a bit...we ended up back at Brigham and Women's hosptial ICU on Friday afternoon. Dad had fluid building up in his chest cavity, and it needed to be drained.  They put him on a lasix drip and started to get the probelm under control, but by then he had sat in bed again for almost 3 days.....so much progress just out the window!  We were back to not being able to stand and walk again....so much for rehab!!!

Back at Brigham, I could tell dad was feeling much more compfortable.  By the next day he was already feeling better and things were back under control.  I expressed my concerns with the rehab center to the doctors and they decided to keep dad in the ICU there at the Brigham until the fluid was under control. 

Paul was able to come out for a few days, and he got there on Saturday the 28th.  Dad was excited to see him!  It was so good for both of them!  I had to leave on Sunday the 29th, and it was tough!  I cried the whole way to the airport, because I hated leaving him!  Paul got to spend a few alone days with dad and then Barbara got there on Tuesday evening. 

As of now, Dad is back in the step down unit and doing well!!!  He has yet to pass his swallow test, and so he is still unable to swallow anything, other than water soaked spongies. Today he walked the whole way around the nurses desk in his unit...WITHOUT STOPPING!!!  That is HUGE!

The plan as far as we know right now, is to get dad to a point that he can walk and get to the bathroom by himself, and then send him to a rehab facitlity for the physical therapy part of things.  Since they are playing things by ear right now, there hasn't been any firm plans made, other than to get him well enough to come home!  That is the ultimate goal!! 

I will do my best to keep the blog more up to date!!  Thanks Aunt Ardis for giving me a little kick in the butt!!  :) 

Saturday, May 21, 2011

Movin' on .....over??

We have finally moved from the ICU!!  They moved dad this morning to a step down ward...same floor, just down the hall....but not ICU!!  It will be good to have a new room, with new scenery!! 

They have been giving Dad some sleeping pills to help him rest at night, and he seems to be very groggy and almost incoherant during the day.  They are going to try and not give him the sleeping pill tonight and see if they can start to regulate his sleeping naturally. 

Today has been a slower day.  Since he has been pretty tired, they havn't really pushed him to walk yet.  He did do a floor pedal for about 20 minutes this moring, and he is now awake enough that they are going to try and get him up to walk. 

Hopefully, tomorrow will start better, and he will be more awake in the morning!  He is anxious to get moving, and is constantly excersizing his legs while in bed!  He wants to get strong and he wants to get out of here!

Lots of love from Boston!

Friday, May 20, 2011

Sleepless in.......Boston?

Hospitals are meant for rest and recovery....unfortunately, it seems that hospitals are the hardest place to sleep!!  After a huge day on Wednesday, Dad didn't get alot of sleep that night, so Thursday ended up being a rough day!  No sleep makes anybody feel icky, but no sleep on top of an already leangthy ICU stay can make even the calmest person loose their mind a bit! 

Frusteration was the hurdle to cross yesterday.  Its hard when you are the one in the hospital to understand just how much you are progressing.  To Dad the days just seem to keep repeating themselves, and he can't understand just how far he has come! 

He is still off of the ventilator and late last night they did take the drainage tube out of his nose!  Both HUGE things!  He did walk yesterday twice as far as he did on Wednesday, so that is also a great thing!   There is talk of moving to a rehab faciltiy by the beginning of the week, and there has also been talk of moving to a step down ward also.  We will hopefully know for sure what the plan is by the end of the day today!

Barbara stayed in the room last night with him, and that helped dad sleep a little more.  I guess we will be taking turns sleeping here with him...he needs his rest, and whatever helps!!

It has also helped that we have been skyping the family at home!  It helps to be able to see all of the people who are constatnly pulling for him!!  If you would like to skype with him, leave a comment with your skype name and we will arrange a time!  He loves to visit, it helps him feel just a little closer to home!

We love you all and thank you for your love and support!!

Thursday, May 19, 2011

WaHoOoO!!!

Up and Walking!!!!  What an amazing day we had yesterday here in Boston!!  Dad was off of the ventilator from 8:20am until midnight!  They put him back on the ventilator for a few hours, and he couldn't stand it, and made them take him off again at 3:00am!  I think he has kicked the vent to the curb!!  He says he feels much better with out it!  HUGE PROGRESS!!

The biggest suprise of the day yesterday was hearing dad talk!!!  After 2+ weeks of silent looks and note writing, he could finally talk to us!  Such a great sound to hear his voice!  He made a video for everyone, but its pretty hard to hear because of all the machines....and he starts to cry in the middle.....but, you get the idea I suppose!
video

Dad also walked yesterday...TWICE!!  He did so well....walked about 60 feet both times.  His legs are strong, but a little wobbly!  (The video is sideways.....sorry!  In my excitement, I forgot which direction to hold my camera!!  It adds charachter!) :)

video


After his marathon, I gave him the royal treatment, and rubbed his piggies with Purell,.....AGAIN....these darn clot socks are beastly to put on!!  Its a workout for sure! I get my workout after he does his! Fair trade I guess!

This morning we had a meeting with Dr. Sugarbaker, and Dr. DaSilva.  They feel like dad is really progressing well, and the plan is to move him to a rehabilitation faciltiy here in Boston next week.  They are expecting him to only be in that faciltiy for 10 days or so with all the progress he has made!! 

The facitliy is in Cambridge, which makes it a little difficult for the person staying with him.  It is about an hour bus/train ride from the Meso house here in Boston. It will be hard for dad to not have anyone close over night....but, we will make it work!

Dad is overwhelmed with all of the love and support he has recieved....he loves you all and keeps telling us he wants to come home and be closer to everyone who cares about him!  He says in the video that he didn't know his life mattered so much!  So, thank you to you all for making him feel so loved! 

Monday, May 16, 2011

Its getting better every day!

We are moving right along these days in Boston!!  Dad is consistantly making progress every day!  He is determined to do his best to get out of this place!!  The staff is amazing, and have really helped him come a long way!!

I mentioned in the earlier posts, Dad's love for Purell foot rubs....this is the face of a man completely content! 

 He is constantly giving me puppy dog eyes, begging me for foot rubs!  I have used my ability to rub feet as a bargaining chip!  He has to work for them! 

 He has to sit up as much as he can, and for as long as he can....we try and keep him occupied by playing an intense game of skip-bo! 

 And tic-tac toe!  He won every game and so got bored quick!

 He earned an extra long foot rub when he got out of the bed/chair and baby stepped to the real chair!  He did very well, and sat up for almost 3 hours the first time in this chair! 

Today has been an expeptional day!  He has been off of the ventilator 2 times for 3 hours each, and has sat up in a chair 2 times for 2 hours each!  He also......STOOD UP!!!  

He was a trooper!  They had him sit and then stand 3 times in a row, and he did GREAT!!  They will continue to work with him until he can walk the hall with a walker!! 

As soon as he is able to be off the ventilator for 24 hours, then he can move from the ICU and EAT!!!  We are at 8 today....with another try on the schedule for later tonight.  That means 12 today.....maybe 16 tomorrow and then hopefully by the end of the week.....24!!!!  We know he can do it!  He is being such a champ! 

Thank you all for your love and concern!  Dad loves when I read him the blog and all of your comments!  Thats what we do to help him pass some time in his chair!