Tuesday, November 01, 2016

Another post surgical update

For those of you not following along on Facebook, this is Chris's description of things after rhabdomyolysis:

" So... The condition of my legs post rhabdo.... Really very doubleplusungood.

A significant fraction... almost 1/3 overall, and in some areas more than half, of my muscle tissue, has died or is damaged so badly it might as well be.

Fluid pockets are all over my legs, ass, back, and behind my knees. Some of them quite swollen and distended, some looser and wrinkly.

A shallow feel of the muscles  and they're... Well, they're either not there at all, or they're spongy and limp. Zero muscle tone at all, and rubbing and squeezing hard... the muscle tissue doesnt feel like muscle at all... more like... yarn, soaked in water.

I started massaging my left earlier thigh and calf earlier... and any time I went the slightest bit hard, it was like electric shocks from the pressure of my fingers. I tried using a vibrating massager, and I literally couldn't stand the nerve pain...

... so I guess it's healing a little at least...

I think I'm going to need surgery to correct the skin at some point... I know I will on my belly. I may need surgery to deal with the fluid pockets if they don't even out and drain on their own... and I may still end up having more muscle damage, never mind constantly having to do PT to avoid atrophy, or healing contracture.

Oh and yeah... that's where the itch is worst.... but pain drowns it out."

But there is good news. He's dropping excess water weight from edema and lymphedema very quickly, and he's regaining some mobility. He's still bedridden though.

He's got a PT nurse visiting twice a week to help him recover.

He's working this week, which helps immensely.

His pain is mostly under control.

We've managed to get the major medical devices he needs bought and paid for, and we've mostly adapted.

That being said there's still some challenges ahead. We need to get our vehicle fixed (minor problems like an ABS sensor and similar issues), inspected, and renewed by the end of the month. We need to get out heating oil topped up. We need to catch up on bills in general. We're close, but not quite there.

And then radiation will be soon, and that's going to be a fairly costly endeavor in terms of logistics (and really underscores the need for the vehicle to be fixed and legal).

So we still need some help. And anything would help.

I've still got a GoFundMe set up, and PayPal to chris@chrisbyrne.com always works. Also, if anyone has any winter clothes for a little boy in 4T or kids VHS lying around and would like to find a home for them, please email me at melody dot Byrne at Gmail dot com.

Thanks all,