Saturday, June 2, 2012

small complication

I have developed a CSF leak which is about the worst thing you can get with this surgery. We are taking a watch and see approach for the next 4 days. Hopefully, lying flat and lots of fluids will help it correct itself. If not then I will need an additional surgery this week.

Please remember that, like grief, dealing with a major illess and surgery takes time. There are good days and bad days and with this particular surgery the recovery is actully more dangerous than the surgery itself. All of the complications that can develop come in the weeks that follow, not during the actual process. I am tryig to do well and talk to people and keep updates but I am still missing bones, part of my skull, and now have a lot of spinal fluid building up in places where it shouldn't be. I've lost 10 pounds in 4 days. That's about 1/10 of my body weight. The combination of steroids, pain pills, muscle relaxers, stool softeners, antibioitcs, and other medications require around the clock care. This is not an easy thing. I might look like I am getting up and moving and doing okay but I still need support. Other than losing Toby this is the most difficult things I have ever gone throgh.

it's also raelly, really painful and kind of a miserable feeling. This wasn't done to stop symptoms but to stop the progression of them. Some of the symptoms have actually gotten worse while others seem to have lessenen, like the back pain, but it's hard to tell if those are really going away or just masked by the fact that i am laying down a lot and taking pain meds. :-)

i will do a big thank you soon but wanted to say that my friends in faraway places have been excellent. katie sent me those lovely flwoers, abby (maxiesmama) sent me some soup (they delivered it yesterday but the dogs scared them so pete has to run up to the post office today and retrieve it) and a friend that i met at the writer's retreat with toby met mom and the kids in cincinnati and went to the children's museum with her to give her some help and adult conversation. they loved that. she'd never met that friend at all! the board of education has been great here (mom works as a teacher) and even the superintendent called to check on me. my friend from alamabama is coming to visit at the end of the month and two of my elderly aunts came and spent the night i got home. plus, i have my readers on here who are closer than most of my friends that live in nearby proximity and you guys keep me going. 

clearly, my spelling and grammar are not back on par yet. :-)

we knew this was going to be hard but for us this really just feels like the beginning. some people, at this point with this surgery, are only just now being released from the hospital. so it's a long road ahead. i am doing the best i can with what i've got.


Jayden's Mommy said...

Rebecca im sorry to hear whats going on. I hope it gets better soon and no more complications. Many huggs your way.


Jayden's Mommy said...

Im sorry. I hope this will past fast and no more complications. Thinking of you. And sending you huggs.

Maxie's Mommy said...

It's probably similar too in trying to sound upbeat but then feeling completely misunderstood when it is interpreted as you doing well. I should know better. If you "sound well" - it means next to nothing. I appreciate your posting this. Get a lot of rest and take good care of yourself. Even that must be incredibly challenging. Thinking of you.....Abby

Rebecca said...

thank ladies. even my dad called tonight to complain about being sick (him) and told m that i must be okay since i answered the phone. someone else told me it must not be that bad since i posted a facebook status update on how i was doing. never mind that it took me 30 minutes to write it from my hospital bed. :-)

Susan said...

So sorry to hear about the complications.

Yes - it is easy to think you must be ok, because you are posting. Like grief, I suppose, we want you to be better, and it is tempting to interpret you doing normal stuff as you being well. So sorry of being guilty of this! I should know better too.

I was reading your other blog last night, and was so angry and distressed to read that people had posted they were bored of your grief in the weeks after Toby died. What arseholes xx

Groves said...

Yes to everything you said!

I am so sorry to hear of the complications - but know (bitterly) that there is no easy road through serious health issues. I'm just sad that it is happening to you, and wish that, after all you have endured so far, things would "go easy."

Obviously, life doesn't work that way - not "fair" like we wish. Not fair at all.

You stay on my mind and will continue. In spite of your spirit and bravery, this is just HARD. I don't forget it when you post here or there. (That's how writers "survive" Hell. By writing. If they can...)

Reading and checking in, thinking of you!

xoxo Cathy in Missouri

Rebecca said...

thanks cahty. yes, writing is helpful to me a lot. :-) it it weren't for ladies and support like you i don't know what i would do. yesterday was spent at the doctor again. i picked up a big infection during the surgery so now they have to get that under control. they sent me home with another course of steroids and antibiotics. i hope it helps a lot.

i continue to be impressed by a lot of people and their kindness and flabbergasted at others who seem like they could care less. but i am trying to be more positive and really look on the bright side, like with you ladies, who offer encouragement without dismissing me or using trite words that aren't comforting. i can't always update and keep everyone in the loop but i will when i can. mostly, i am sleeping a lot at this point. :-)