Sharing the lessons along the way…

Posts tagged ‘removal of intrathecal baclofen pump’

Post Op Day 1: Ouchies and Answers

The day of surgery always feels better than the day after, unfortunately.  Since there are three incisions, it is a bit of a challenge to get comfortable.

The one in the back is at an angle the doctor said, and that was the only way he could get everything out back there that was attached to the catheter tip.  He said that might take a little longer to heal as well.  The other two are on either side of my tummy.

I talked to the doctor yesterday because there had been some bleeding from my back incision Thursday, and we had been watching that incision to make sure that no spinal fluid is leaking from it.

Pretty Flowers

Pretty Flowers

That is the purpose of the girdle (they call it a binder) that I showed you in yesterday’s picture—to add pressure to keep the hole where the catheter tip went into my spine from leaking.

The binder is pretty uncomfortable on the other incisions, but I am not about to remove it.

I took the day off yesterday from teaching so that I could rest.  I did rest, but the pain medications aren’t helping that much with the pain and they seem to agitate me a bit more than I would like.

The doctor kept me awake (under twilight anesthesia) while he did the back part of the surgery and he said that as soon as he got the catheter tip out, I was saying it felt better already.

My previous doctors had created a small loop there with the catheter tubing to anchor it and prevent it from pulling out of my spinal canal.  I am sure they did this because the Codman was pulled all the way out.

It is likely why I was having so much pain back there and apparently was also responsible for my torso burning with nerve pain.  I no longer have the torso burning horribly, although I may just have the incision pain competing for my attention right now.

I get to wear this girdle for two more days before switching to an Ace bandage around the back incision.  A spinal fluid leak would be quite a setback and would require a neurosurgeon going back in there and applying a patch to stop the leak.  Reminds me of fixing a hole in a flat tire, but quite a bit more of an ordeal.

Resting and being still should help prevent that as well, so that is what I am doing.  Not that I really feel like doing much else yet anyway.

Thank you all for the facebook love, the comments love, the texts, the emails, the flowers, the help and the hugs!!


Murphy’s Law Monday and BGP

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Sometimes, no matter what your intentions, the day just doesn’t go nearly as smoothly as you envisioned it could.

Yesterday was far from smooth sailing.

I opted to use the power wheelchair at HEP to get around campus, see more people and allow Duke to move about a bit more quickly.  It was a bit emotional when I first took off in the chair, but it wasn’t the time or place to get emotional.

I imagined sitting in that chair with my big girl panties (BGP) on, and kept going.  I reminded myself that using the chair was the only thing that made good logical sense given the last decrease.

It is a means to an end.  It is only a mode of transportation.

I repeated these statements to myself all day.  I used similar versions for other people when they asked what had happened to me through the course of the day.

I had really forgotten what it is like to navigate within offices and all around from a seated, wheeled position.  Well, I had forgotten the many nuances of doing so, but was reminded when I first tried to open a door.

I also thought I had taken note of many things anticipating this phase of assistive equipment, but realized I didn’t know where exactly to cross the street because I didn’t know where the sidewalk curbing was.

My only experience since getting my first pump in 2007 has been walking my dogs with the power chair in the neighborhood in recent weeks.  Clearly that was not adequate preparation for going into a situation I really only know as a standing, walking human.

About half way through the day, I even started to feel out of sorts.  I don’t know what “out of sorts” mean or if I was ever “in sorts” from the day’s start.

Feeling the emotional whirlwind was often focused as intermittent bursts of frustration.  I couldn’t get where I was trying to go at several points in the day, and even the closest bathroom door’s lock was broken and had to be replaced before I could use it.

I kept reminding myself that while things were not going all that smoothly, it was still far easier physically to get around campus in that power chair than on my own power.

Duke seemed to appreciate being able to move around faster in the heat and did ok with someone else taking him up and down the stairs while I rode the elevator. Nothing else needed to matter.

Fortunately, the drive home was without issues.  The less than smooth nature of the day followed with strange computer issues and more Murphy’s Law-like happenings once I was back home.

Perhaps the strangeness of the Monday had nothing to do with the chair or me. Or perhaps it did.  It doesn’t matter.

I broke myself back in using the power chair for distances in the work setting.  If Monday is as bad as it gets, then I got this.

Google My Dogs

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For grins and giggles one day last week, I did a search on Google.  My search words were, “Duke the dog homeless emergency project” and was surprised to see that my dog Duke was there with hits spanning two pages.  Of course, not all the search hits were him on both of those pages, and some were because of his mention here on my blog, but I thought it was pretty cool much came up at all.

If you know me or are a regular follower of my blog, you know that my two dogs—Duke and Amore— have been such wonderful helpers, teachers and companions during their 12 years here on this planet with me so far.

Our story has been printed in the Tampa Bay Times, Dunedin and New Port Richey Patch, Project PUP’s newsletters, and the HEP newsletters.  They are both painted on Murals for Mutts’ murals in St. Petersburg, Dunedin House of Beer and Skip’s.  They are also supporting characters in my book, because they have been supporting characters in my life.

One of my dogs, Duke, has worked as a therapy dog since May 2010.  We visit the Homeless Emergency Project and there, he has become somewhat of a rock star.  Staff and clients keep treats handy for his visits, and he loves the attention and the treats.

Duke, unlike his brother, loves to have constant attention and he seems to know who needs him the most in a room full of people, so he goes there.

Because of my history with HEP as a homeless outreach therapist and resident, it is even more special to me that Duke and I go back there together.  Because of my desire to make a difference in as much of my corner of the world as is possible in my lifetime, I love that Duke has touched so many lives during his working time.

While I haven’t mentioned much outside of walking my dogs in a power chair as I cope with my current situation, it goes without saying that my dogs continue to keep me grounded, sane and moving forward despite the challenges.  My biggest concern with my decision for removing the pump was honestly my dogs.  They motivate me to keep trying harder and inspire me to both move forward and be present.

Of course, they will live forever in my heart.  But I was happy to have them painted on murals to immortalize them, and now it is even nicer to know that when the murals fade or business ownership changes, that they are also immortalized in cyberspace.


Kitt O'Malley

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