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Monday, April 13, 2009

Katie the “Poo” is doing well

For those that have been concerned about how well Katie is progressing after her major surgery to correct a very large liver bypassing artery… She is doing extremely well.  Much better than was thought by most of the doctors by this point. He last lab work came back nearly normal in every respect.

She has been more than 4 weeks without a seizure and the 3 that she had prior to that time were progressively gentler and shorter. This is a very good sign for the future.

It seems that the opinions of her doctors varies as to her final stability and the likelihood of continued seizures after the liver shunt has been fully corrected. Those more in the General Internal medicine group have been very confident that she will be seizure free.  Those in the neurological specialty have been more certain that she will always have to have her seizures controlled and the surgeons are completely uncommitted either way.

This division is interesting because all along the way, our choices in deciding whether it was kinder and cheaper to work towards a seizure free life or just put her down (horrors! I hear out there!) would be the right choice. Those chartered with the early investigations and recommendations were all for a simple permanent solution with surgery but as we drilled deeper into the problem (all the while gushing $$$$ like an artesian well) there were more and more “well… but…” responses and the odds kept changing as to her anticipated permanent quality of life (and ours).

By the time we were up to initiating the surgery we were already more than $2600 into her diagnosis and care and the surgery was expected to run from $2300 to maybe $5000 … or more, depending on complications and what they found once inside. Even after the surgery ($2500 in the end) there continued to be speculation that she might have to have additional surgeries and a growing certainty that her seizures would always have to be controlled to some degree.

I am a kind person by nature but this whole scenario of decaying optimism over the course of her diagnosis and treatment has left me with a real “doesn’t anyone actually know anything?” feeling.  When it got to the day after surgery and the surgeon says that they have never seen such a large liver shunt before and don’t have any real evidence as to  how fast it will close up nor how completely, nor how to titrate the after surgery medications to keep her seizure free while she heals, I was feeling like we had really been had as guinea pigs and would continue to carry an unknown financial and emotional burden for months or years.  Not a happy camper am I right now.

Yes, Katie is doing very well. Better than expected (but consider that they had no reality based expectations in her case) and tapering off of the meds. Actually,  she is on about 1/8th the dosages she started with and completely off of one med and her personality is coming back to normal.

The final outcome is still out there 8 months to a year before we will know for sure if she is going to live a normal life from there on. Right now, we hope so.

In the interim, my previous blog about perspectives is very much in action.  Had we not been already living in the 400 sq ft of DakotR while we worked through all of this we truthfully would not have had any idea what the best and worst case endings for this might actually mean to us once we are on the road.  Seriously, working around a sick or impaired animal 24/7 is a real challenge under normal conditions.  in the limited space of an RV what affects one affects all 24/7.

So, The perspective we gained from this whole experience set in the context of living and being full timers already is that a pet is not a great attribute to have along while trying to travel and see new things and workamp and generally spend much time away from the RV. Sure, that wagging tail, slurpy kiss and totally glad to see us is something hard to deny as a benefit. But, spontaneity is generally not on board and a full night’s sleep is mostly out of the question without Ambien.

Everything has to be planned in advance with the pet’s wellbeing at the top of the to do list and whose needs are always more important than our wants.

This perspective is one of those things that we have learned on the way to fulltiming and something that would have been completely invisible on the radar if we had owned the resources to just get on the road in the beginning.

Katie is now a part of our family and even the occasional curious thought that we might be better off if she was “rescued” again gives us uncontrollable shudders.

ttfn

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