Wed July 20, 2011

We went back to the U for Travis's 1st physical therapy visit since the infusions last week.  Still at a very low pain level and a lot of the time he is pain free. GREAT!!!  So he got some exercise to help stretch and strengthen his leg.  Its so weak from no use really since injury in Oct 2010.   Today was also his fellow Dr.'s last week so we got to talk for a few minutes.  He is moving to Oklahoma soon, he will be very missed by Trav.  Not sure we would have got the results we did if he didn't fight to get the Ketamine bumped up when he did.  He also told us that the Dr.s involved would be writing some papers to publish on all that Trav has been thru. Travis was the first outpatient ketamine treatment they had done at the U of U Pain Clinic.  They have done them in the hospital but not the office.  So we hope that this can help others dealing with this nasty monster.  I was able to get the video that they took of Trav and the first time he was able to walk.  Its about 40 minutes long else I would post it here.  If I can figure out how to take pieces of it I will post it.  It goes from him doing stretches and talking about wanting to walk again and if he remembers how to walking and the emotion are incredible.  I bawled again watching it.
Sleep has been a little of a challenge still.  Getting better each night for him.  Stairs are tricky since his leg is so weak.  All of that will come.  Tomorrow will be a week with no crutches!!!
We will be going back once a week for the next month so I will post as much as I can about all he is going thru getting back to life.
Might give the pool a try this weekend and he was finally able to walk barefoot on grass.  What a great feeling!!!

Remission!!!1

It feels so good to be home.  I have missed my puppies and my bed.  OK I have missed Tony and Justin too.

So today Trav walked into the pain clinic carrying his crutches.  So proud of him!!!!  His pain flared to a 4 last night but that is do able, he also slept.  They paraded him thru the clinic to see everyone.  They had shown his video in the morning meeting and it made him a clinic celebrity.  So they then took us too the infusion room and started the infusion.  He was soon pain free 100%.  we went on a few other walks around the clinic to check color change and pain.  All is good with both.  He finally got to thank Dr. Junkins and Elaine his physical therapist for all they have done and tried to get him to this point.  It may have taken a few months to get into the UofU Pain Clinic but they are the BEST!!!

So Travis is in remission!!!  We hope it will last and there won't be any need for follow up infusions.  We will be going back to the clinic 1x a week for the next month to monitor him and do therapy.  The comforting part is we know what works now and won't have to go thru all the treatments to get to this point again.

I will update with how things are going and the therapy he is doing so don't forget to check back.  Also Travis will be posting soon with how this has been for him.  Thanks again for all the love and support.

More videos

More from 7/14.

So Trav's pain has been down all day!!!!  The highest it has gotten has been a 4 !!!!!!!!!!!!!!!
I have a few more videos to share.

Day 4 is WONDERFUL!!!!

Went this morning to the hospital not expecting much different then yesterday.  Pain was at a 9 to 10 on a scale from 1-10 being the worst.  They U of U  Dr.'s have a meeting everyday to discuss the patients.  So in this meeting Dr. Sri discussed with the others about upping his dose even though he was at the highest they should go already.  They got the ok for more meds so that they didn't run out by upping his dose.  So the day started at 20 mg.  After 20 min they boosted him with 10 mg over 10 minutes.  Then upped it to 35 per hour.  After about another 45 min they upped it to 40 per hour.

40 is the magic number!!!!  Trav started to feel the disconnected feeling where it hurts but he can ignore the pain. So the nurse Boone and myself encouraged him to work on moving his toes and little range or motion exercises.  Soon he was moving it like before he was hurt.  All of us are shocked so Boone goes to get  Sri and the PT Lynn.  So I ask if I can touch his leg.  Now even a cold sheet or a cool breeze would make Trav cry when it touched his leg.  I gently laid my hand on his calf.  It felt normal !!!!

Within the next few minutes Lynn had Trav dangle his feet off the bed and feeling the carpet.  Then we moved to standing and his first steps being pain free in 8 months.  The whole room was in tears!!!   Sri was on the phone trying to reach Dr. Junkins who is the main Dr. over Travis.  His regular PT Elaine was out sick so they got a hold of her and she was able to talk to Trav.  It was tears of joy from everyone that has watched all the other treatments fail and Trav's hope go down with each fail.  Trav hugged and thanked everyone for all they had done to get him to this point.  They got it all on video to show everyone and Trav encase he didn't remember.
So after celebrating they had him lay back in bed and rest to finish off the infusion.  No one knows if the pain will return  but we are all hopeful that this is the starting point of remission.  So far some of the pain has come back but thew level is at a 2.  His ankle is sensitive but still touchable.  Most of the pain is from not being used in so many months.  He will take it easy and slowly get back into using it.  We still have 1 more day of infusions but hope that it just makes his brain believe even more he isn't hurt and can use this leg.
Miracles do happen and prayers can be answered as long as you believe!!!!
These are links to the video I took today.  Pain free is me touching Trav's leg for the first time without pain.

pain free 

This one is of his first steps.  When we had started  today Boone had asked him what he hopped this would do and Trav was scared that he had forgot how to walk.  Just like riding a bike he didn't forget.

Walking

Day 3

The nurse had started him at 20 mg per hour which is as high as she can set it.  The Dr. came in about 45 min later and upped it to 25 mg per hour.  He got a little goofy but really didn't have any effects like the past 2 days.  so with 2 hours left the Dr. raised it 1 more time to 30 mg. per hour.  That is as high as he dares go in office.  He did feel that boost.  Still no kitties or silly things like the first day.  I am ok with that since it sucks seeing your kid stoned.  I didn't notice the flairs in pain that he had the first 2 days but Trav says he had a few.

 The nurse flushed the remaining Ketamine from the iv tube and that gave him a boost. So he did get about 10-15 mins of "no pain"but we didn't get much exercise out of it.  He needs about 4 hours of that feeling every day.  To do that he will have to be hospitalized. which we might end up doing but will decide that at the end of the week. I just hope he can get something out of this that will last and give him some hope that he can beat this disease.

I think there has been a few very small improvements but convincing Trav has been hard.  So fingers crossed and still hoping for some changes tomorrow and Fri. 

Day 2

Ok today was not as fun as yesterday with hallucinations.  I was good with it and he doesn't remember so it works .I did have 2 heads for a short time.  Trav still felt like we had only been there maybe an hour when we had been at the clinic for 5 hours.  The ketamine is causing his pain to flare while he is on it. Not sure the exact reason but it was brought up that its his brain fighting the drugs.   That makes it hard to have him move it.  But he doesn't remember some of the pain.  The Dr.'s say that the pain control will be slow coming but he should be feeling something soon. He is topped out on the dose the can give him in the office and for the amount of time they want him on it. We did notice that he was able to lay with his back and hips twisted.   So that was good and we took that as a first step.
I tried to take his mind off of things today so we went to the zoo.  He wouldn't use a wheelchair so he was on his crutches.  Bad mistake his hands are so sore and so is his leg from it hanging down all day.  But on the good side he is tired tonight and might sleep.  Have to see what the morning brings and we may spend tomorrow resting after the hospital. 

My hopes are still high that this will work and bring him some relief.

Monday 1st treatment

OK we had to be at the clinic by 8:30am.  Didn't get started with the injection until 9:30. Had to do an exam and get the IV started.   They dosed him with 10 mg and a IV drip of the same amount per hour.  Within a few minutes the Ketamine started to work.  He got the giggles and then would be tired then giggles again.  After 45 minutes he was back to normal so they upped his dose to 15 mg per hour.  Still was feeling normal and we did a few exercises.  That flared his pain.   So again upped his dose to 20 per hour.    By 12 noon the dose was up to 25 per hour.  This is when he started to see the ceiling move like he was playing "frogger".  Seeing double of everything.  Had a vivid dream of mini kitties pushing root beer cans up his belly.  Yes he was very stoned.  Not sure I liked seeing it but at the same time it was funny.  He would flip his head from side to side and think he was flipping it super fast.  Just glad he didn't see any scary things.
The treatment didn't do anything for his pain today and that was expected.  It can take a couple doses to help reset his brain.  So we should know if its going to help by Wed.  He reacted just like they had hoped and no bad hallucinations.  They are working on dose and how it effects him today.  Tomorrow he will start at the 25 per hour dose and go from there.
He has crashed hard now and I'm just letting him sleep its rare he sleeps this hard.  He had 3 doses of Atavan also to help relax him so that isn't hurting the sleeping either.

Sunday

Well we will be heading to Salt Lake soon to live with my sisters Kels and Alli.  Thanks guys for letting us crash at your place for the next week.  Travis 's appointment is at 8:30am everyday until Fri.
  Not sure how he is feeling about it all yet other then hoping it works.  Something has got to give this kid some relief!!!  I am feeling nervous but also very hopeful.  I hate the thought of putting him through this but at the same time he has been through enough for a lifetime.  Fingers and toes are all crossed that this does the trick.
I will update every night to let everyone who cares in on the fun. 

Thanks again to everyone who helped with the yardsales so we could do this.  Love you all!!!