Rehab and baclofen pump...my update (LONG post)

[addicted2harleys]

Hi, everyone-

I am so sorry it has taken me so long to get back to you.  This has been one hell of a month for me.  First off, I want to thank you all for the wonderful messages on my last post to the list that I wasn't able to get to.  The support you all give is always so overwhelming, in a good way.  

I completed my two weeks of rehab that I told you all about.  Between myself and all my docs, nurses and therapists, we all thought I was doing so very well on progress.  My meds had been tweaked and I was feeling pretty good.  My goal had been to walk out the doors when I left, even if it was with a walker.  Three days before my leave date, I had my first pump refill.  I was so worried about how it was going to feel, but it was a major piece of cake.  What a relief!  Two days before I left rehab, I was close to my goal and was sure to reach it.  I was having issues with walking, but I was out of the chair.  

The day before I left, my spasms and stiffness came back pretty hard.  I could not use my right leg for walking or much of anything else.  It was my hip and all it wanted to do is spasm and then go stiff.  This happened throughout my day in therapy.  I cried through therapy.  It wasn't fair.  For months I have been told to be patient, be patient.  And I listened.  And I stayed positive.  It wasn't suppose to go backwards.  

The morning after, the day I was due to leave rehab, my NP that is my pump manager stopped in my room.  She works at this rehab as well as the other outpatient one I will be usually seeing her at, btw.  I told her what happened.  She got quite upset.  She had left strict instructions through my stay that if anything goes wrong with my therapy, they are to call her...they didn't.  She felt I just needed an increase in my pump dose and did it within the hour.  

So, I left rehab on Friday, July 8th.  Saturday I was still having troubles with spasms and didn't feel real well...slept most of the day.  Sunday seemed to be following suit.  I had laid down on the couch soon after waking and slept til the afternoon.  When I woke, my lower back hurt bad.  I reach back there and had a huge bubble type thing filled with fluid.  I knew this was a very bad thing and that I needed to get to the ER asap.  

I called my pump nurse and she wanted me to go to the best neurosurgeons in AZ.  I found it ironic that we were passing 12-15 hospitals to get there.   Needless to say, I was admitted.  I was poked and prodded and poked some more.  I had a flow test done by fluoroscopy and the results were what we all knew, it was just confirmation.  The catheter to my pump was leaking...in two places.  Schedule for surgery.  

I had the surgery Wednesday afternoon.  The surgeon could not find where the leak was in the catheter so he replaced it.  He also verified all was well with the pump.  So I had both of my original incisions reopened...whoohoo.  :/   Back to square -3...I say this because the second time around hurts much worse than the last.  And this time I had the tube down my throat during surgery...that was a first for me and it sucked.  lol

Thursday was back to rehab.  The first several days were pretty much hell.  I hurt so much but still had to do therapy.  I was so nauseous and constipated.  But, every day has gotten better.  My incision area is still very sore (maybe I am just a big baby).  Therapy is working wonders on me.  Today, I walked all the way to my room from the gym for the first time.  It was with a walker and and my therapist holding me with a belt around my chest, but I did it.  That was all that mattered to me.  

I think I will be here until next Thursday.  My pump dose still needs it's increases, which we had had to start from scratch due to the surgery.  I think we are going to begin adding pain meds to my pump to get me off the pills.  But that won't come until we are done getting the Baclofen dose where it needs to be.  

So, maybe by then I can walk out the door without the walker.  :)

Oh, also, I am down to 1-2 smokes a day.  That last hurdle has been rough and I am just not ready to get over it yet.  I will get there.  I am awful proud of my progress with it.  

So, that's what I have been up to...how about you all?
Addi

[Sarahsmom46]

I'm glad you are back in rehab to be honest.  I have been in inpatient rehab a couple times myself and know the trials and triumphs you are talking about, but felt that the 2 weeks you ha d the first t ime areound were a bit short especially with all that you have been through over the past year(s).  

You are going to be tip top this time around and will come out, G-d willing, healthier, more confident, and hopefully walking on your own two feet.  

You are truly inspiring and certainly we all have learned so much from you.  Thank you for sharing this all with us and now all I can say is that I wait to hear about you jumping back on that Harley even if it is just to get a picture.  :)

Many hugs and wishing you all the best.

Julie

[anon07072023]

I'm so happy that your rehab is going good.  I can definitely see you smiling when you say, " Today, I walked all the way to my room from the gym for the first time.  It was with a walker and and my therapist holding me with a belt around my chest, but I did it.  That was all that mattered to me."  
That's such good news!! I actually shed a tear of joy for you.  I hope that you can continue to progress.  And you're doing great with quitting smoking. I've heard it's one of the strongest addictions to have in the world.    

Hugs,
Kelly    

[jujuminx]

That wasn't so long! Actually I was wanting more.  I love the way you write and story tell. Good stuff girl.

It's incredible what you have been through. Do you feel us rooting for you?  Cause we are big time.  Addi, we are so proud of how far you have come. Don't look back, just keep looking forward.

With as far as you have come, give yourself alittle slack. Enjoy what brings you joy w/o the guilt.  I am sorry for all the pain you have been through, sometimes it just s ucks to be human.  It seems like you are on the other side of the mountain now so rest up from the long climb.

Hugs and good wishes,

Julie

[Lulu54]

Where do I even begin in response to all your news?

Bless that NP for not messing around and getting you to the right hospital where you would be best treated.  I am so glad you are in those capable hands.

Good for you to keep pushing iwth the PT - attitude really does help and with yours I see you ditching that walker sooner rather than later.

It s ucks that you had the pump leak and reopened surgical wounds.  I can't imagine how painful that must be to go in again.  I trust you will file the report with the manufacturer of the pump - I'm guessing it is medtronics.  They should be notified by you of their product defect.  Right now you have to focus on Addi and getting well, but I'm sure others will advise you to seek legal counsel for recourse on this faulty product.  Tuck that idea away for now and focus on you.  Dust if off later if you think it fits your situation.

Quitting smoking s ucks almost as much as the faulty catheter for the pump.  Just last night after a filling Chinese meal I was longing for a cigarette to help finish the meal.  It's been over 3 years for me since quitting and I still get smacked with the urge.  You are doing terrific getting this down to 1-2 day.  Keep up the great work.  Heck, I would say if you can stay at 1-2 cigarettes a day, don't quit.  Enjoy each day with this treat until you know it's time to stop.  Non-smokers can't begin to understand that comment, so don't try.

I am so proud to call you a friend - your positive attitude and fight shines through in your words here.  Keep it up and you will be home in no time, learning to live with the name of your dx.  It doesn't change who you are, but it sure does make a difference.

lots of hugs and more to you,
L

[addicted2harleys]

Thanks, Kat.  I needed to hear that.  I try so hard to stay positive and strong.  It sure makes it easier to keep up at it when there is a support team with you along the way.  If I remember right, you are quitting smoking, too?  We seem to both be standing at the last hurdle, huh?  It is so very hard to completely let go of something that has been with you through thick and thin for so very long.  I know we will both cross that last hurdle...when we are ready.  

Hugs,
Addi

[torikat32]

Addi so sorry to hear about the problems you have had with the pump but hope you will get back to the level of comfort you need. I am very happy to hear about your progress in therapy it amazing what they can do for people I have been going to pt since november but anyways you were walking yeah with a walker and a gait belt but still its walking and thats what matters. A few more weeks pump working pain meds on board and you will be walking out the front door. I am happy that you have cut down on smoking I smoke a few a day as well its one of those crutches that people that dont smoke dont understand how hard it is to just give it up so 2-3 a day isnt as bad as a pack a day in my book. keep up the good work

Kat