The Dream Team

I am back in Van. The dream team is reunited!

In Joey health news: still working on the bowel blockage issue, but he looks more like his slim jim self and less like the comic book guy. Missed him a lot.

PR was fun. Did some seriously condensed visiting (those who I didn’t get to see hope to see you soon), did a day trip to Savary which was fun by the tonne, did some serious sewing, and tried to chill out at home. Last night and this morn Joey and I visited with Rebecca, went to a bit of the pride parade, and napped like the couple of sloths we are.

And on that note: goodnight!

Kirstin

Pause for Thought

ERCP was done yesterday afternoon. Still having pain; they might do an ultrasound today to check for abcesses on his liver and then drain them if they are there.

Got an opinion yesterday from one of the liver transplant surgeons that is giving us pause for thought. Not quite ready to cast it out on the website yet; we are still processing and getting information before any decisions are made. So that’s what today will consist of.

Gotta get the boy some breakie and do some scurrying around. Peace ya’ll.

K

In Van

Transfusion went fine, INR is down enough for them to do the ERCP. Joey was air ambulanced out to Vancouver this morning, I was denied transport and have to drive down and meet him. Hopefully they are able to get him in for the ERCP this morning.

K

Sad News

Our friend Eva Markvoort passed away yesterday morning. Eva was waiting for her second double lung transplant; she had been experiencing chronic rejection for the past several months and had to be relisted for transplant. She died waiting on the list in BC.

Eva was a force in the CF community and a recent recipient of the Summerhayes award for her exceptional commitment to the CF cause. She was brave enough to open up her life to the world, both through her award winning documentary 65_redroses (in which cameras follow her through her wait and recovery from her first transplant) and through her no bars held blog: http://65redroses.livejournal.com/ She let the world into her life so openly and so thougoughly, helping those outside of the CF community come closer to understanding what it is like living with and dying from this disease; prompting  them to care about CF and transplant awareness. For this we will be forever grateful. We will miss her a lot. Her spirit lives on in the hearts of those who knew her and in the amazing work that she did for the Canadian Cystic Firbrosis Foundation. Our hearts are with her family and friends.

And now Joey. Another blockage and back in hospital again. He is expected to be air ambulanced out to Vancouver for another ERCP in the morning tomorrow. I’m about 80% sure that he has me talked into not going down with him this time (worried about missing work), but that could change at any time depending on how he’s doing. Right now he is in pain, but they seem to have it controlled at a bearable level. Momma R is on standby for phone calls with doctors tomorrow.

That’s where I’m leaving it for now because I came home to sleep and pack some stuff for him and I don’t want the helicopter to take off with him in it when I have his meds with me. Later.

Kirstin

For more info, or if you would like to make a donation to the CF cause, please visit: http://www.ccff.ca/

Sugar Packets

So this is what I have been reduced to: writing medical information on the backs of the sugar packets that come with “meal” trays because I can’t get it together to remember a piece of paper for when the doctor comes in to talk to us. The stints were both pulled and some sludge has been removed. No more stints were put in; it seems that they caused more problems than they solved and given the state of Joey’s liver, would continue to do so if they were reinserted. So out they will stay.

The doc said that if Joey gets more pain it is likely intrahepatic. Basically, what this means in normal-people language is that he needs a liver transplant. No surprises there.

He is reluctant to do more ERCPs, both because he figures that they won’t actaully solve anything if there are no blockages and because they can actually lead to infection (foreign objects inserted into someone who’s immunosurpressed – not good).

So what if Joey gets pain again? His first move would be to check for abcesses in the liver and then drain them if they are present. Can’t wait.

The plan right now is for Joey to be sprung today. He is in less pain than he’s been for the past week and he actually has an appetite! I am out forraging for food as we speak. (For some reason the cold, soggy waffles that came on his breakfast tray did not appeal to him. What a picky SOB). Hope everyone’s enjoying their Saturday brunch!

Kirstin

Sleeping at the hospital…at least the walls aren’t dusty rose

Greetings all,

Another ERCP was done this afternoon. We haven’t got a chance to talk to the doctors yet, but from what I hear the stints were removed. Can’t really tell if Joey’s pain is reduced yet though – he’s still pretty doped up.

Sleeping at the hospital tonight; hoping to catch the docs during morning rounds. Richard is in Vancouver right now, so we might be in for a good time tomorrow. Maybe he’ll cut down a tree in the heart of the city and we can have a fire pit beside the hospital. You never know. (By the way, I am completely serious).

And on that note, I’m heading upstairs to go to bed. More news when there is news.

Kirstin