Half the Energy, Twice the Spunk

For the time being, this blog will be less about the boys, and more about keeping family and friends updated on my (moms) condition while I am in the hospital.

I have been here for 9 days now, and look ro have another 2 weeks to go at this point.

It's been a rough few days, but we are making (slow) progress.

The high dose prednisone they tried for the first week did nothing at all so on Wed it was decided that we needed to do 2 things - keep me from starving (my gut is not working at all) and try a different treatment approach.

So on Wed afternoon I had a PICC line placed in my arm (large IV that goes directly to the heart) and today they started running something called TPN (total parenteral nutrition) - essentially they are feeding me through my IV rather than my gut - I should start feeling stronger pretty fast.

That went very well - the picc line went in very easily which I was relieved with as the last time they tried to put a picc line in was a nightmare. My blood vessels do NOT like being poked and in the past any time they try to place lines the vessels clamp shut and they cannot. So the PICC placement was a huge relief.

Today the second half of the plan was attempted - they are going to do a treatment called plasmapheresis, where they run my blood through a machine to clean out all the antibodies that are attacking my nerves.
To do this they need to place another line. They tried to place the line in my neck today (picture a big IV in the neck - ick) and my blood vessels lived up to their reputation this time. The docs spent an hour trying to get the line in. Much cursing was involved. After all the work and frustration they had to give up, and I have no line.

They were dumfounded. But I believe they believe me now when I tell them my veins are stubborn.

So tomorrow I will go down to Interventional Radiology so they can try to place a different kind of line under an xray machine. I have asked if they can give me consious sedation/drug me up and they sound as though they will...

Tonite I'm sore, tired, and looking forward to feeling better from the tpn at least. Also looking forward to getting this treatment over with so I can get to feeling better.

I have the sweetest quiet little old french lady for a roomate now so hopefully she sleeps well.

Well that's tonite... I'll try to update regularly while I'm here as it's easier for family to check in.

Trying to stay positive.

K

I'll start with the good: the boys are fantastic, thriving at school and growing like weeds. For that we're thankful.

I unfortunately am not.

This spring I was diagnosed with Autoimmune Autonomic Ganglionopathy, an extremely rare autoimmune disease that attacks the autonomic nerves (the nerves that control the heart, breathing, gut, eyes, etc). Treatment worked initially but I relapsed in August and have been inpatient for a week now trying to get things under control.
High dose steroids do not seem to be working and the options get progressively crummier, so we're sorting out just what kind of 'crummy' we're willing to run with at this point.

I wish I had something profound and meaningful to say but right now I'm pissed off, starving, frustrated with my body, and missing my family.

I know I'll make peace with this and find a new happy medium but right now the 'magic train ride' that one gets whisked off on when they are inpatient (that one your expected to bump along quietly on, agreeing with and complying with every doc/nurse that talks to you, lest you be labled 'difficult') has taken it's toll and if I didn't know I would simply be back here in 2 days worse than when I came in, I'd likely march out the door myself.

Hopefully tomorrow will find me in a more positive headspace. For now I'm gonna put my headphones on, watch more food network and mope for a while.

K

Well time has managed to once again slip away on me.

The boys are happily at school.

Tyler went off to his first day of kindergarden professing excitement at finally being able to learn about nuclear physics.

Brandon asked me to program 'Carla (his school worker) is a big bug' into his communication device.

The boys are doing fantastic.

I am falling apart again, and at this point skirting another hospital admission on account of a relapse of the autoimmune stuff, but hoping to continue skirting it and levelling off soon. Time will tell.

It's always time that is the deciding factor.

Keeping on keeping on.