A lot of people have been wondering what the next step is with Joey’s liver transplant. Recap: looking for potential live liver donor matches was put on hold a few months back until an effective plan for managing Joey’s current pain had been worked out. One of the key docs who was pushing for the transplant to happen quickly had told us that Joey should be off of IV pain meds. Unfortunately, that is essentially what he has gone home on, since none of the other pain control options worked for him. Major bummer. We have been told that the liver transplant team’s biggest concern is their ability to control his pain post-operatively. Some doctors figure that this won’t be a problem, other doctors figure that it will.

As it stands now, donor testing is still on hold. We have an appointment with BC Transplant at the end of the month. Our hope is that shortly after this appointment, we will have an answer as to whether or not the BC Transplant team is willing to perform Joey’s liver transplant. That is a big question mark that quite frankly, is extremely stressful.

In the meantime, we are trying to burry our heads in the sand and live in denial. So far this is going nicely. We are happy that he’s home and that we get a break from the majority of the in your face hospital stuff for the next little while. Thank you to everyone who keeps themselves in the loop by checking cfsucks. We appreciate that you keep yourselves in the know, so that we don’t have to keep on rehashing this information with everyone we see. That in itself can be extremely mentally draining.  We love being at home, having the chance to get outside and breathe some fresh air while it is still warm, and do some low key visiting. Oh, and speaking of heavy denial – do not talk to us about fall either. It’s still summer until we say it ain’t. Even if Momma R did the Christmas draw last week. Damn her eager-beaverishness!

K & J

Just a little note to let ya’ll know that we’re still kicking. Have been laying low for the past few days…pretty darn tired, especially Joey, who still needs a couple of naps a day. That said, we are very much enjoying our time around the home front.

The pump is working out all right, although it is taking some getting used to (i.e. getting tubing tangled up in pillows and mastering the challenges of changing your shirt around it). That said, it’s nothing the J-man can’t handle.

Thank you so much to all of the health care staff who looked after him and made it possible for Joey to come home. Also, thank you once again to everyone in our extended support network for your help over the last few months…or should I say years? We appreciate it soooooo much.

Love,

K & J

Joey got to come home today. For real! After 5 months, to the day, in hospital he is finally home. We are so happy!

Like, seriously happy.

K & J

Actually, it turns out the real thing is funnier.

You get the idea.

K & J

Today was busy. Had quite a few visitors to welcome us back. We also got trained on how to use Joey’s pump (Kimberly too. Now that’s what I call efficient visiting!) There are still a few more details that need to be worked out before he can come home for real, but we’re happy that steps are being taken in that direction. Here’s hoping he’s discharged soon.

We also managed to sneak out for a few minutes to attend a retirement party for Marilyn Carey, who has been a very special mentor to me. I am going to miss working with her a lot. While we were at Marilyn’s party, we heard a rumor that the gang at Youth & Family had hoped to meet us at the airport all dressed in fanny packs as a show of solidarity. Too bad we had no idea when Joey was going to be transferred back to PR. You know your co-workers are awesome when…

K & J

PS The mental image is almost as good as the real thing. Thanks guys!

Finally made it back to PR today. Woo hoo! Or should I say: WOOOOO HOOOOO! (I think the second one is the ticket).

Joey is currently napping at the hospital. I am currently racing around trying to piece together random stuff that he might need for this leg of his stay. This is particularly challenging when you haven’t been living at home for 3 1/2 months and have little to no idea where any of your stuff is. (Portable DVD player where are you? I have your remote, but you have mysteriously vanished).

Yeah for Powell River. One step closer to coming home for real.

K & J

The request to be transferred to Powell River hospital has been made. No beds available just yet. Now we wait…

K & J

Things are ticking along. At this point, it looks like the docs here will request a bed in Powell River hospital early next week. After one opens up, Joey will be transferred back to Powell River, where he will hopefully only need to stay in hospital for a short time before he is allowed to go home for real. Keep your fingers crossed for us.

K & J

By the way people of Powell River: no pressure, but his majesty expects a parade.

3 years today since Joey received his new lungs. Happy birthday dear transplanted organ…(and Matthew and Richard).

K & J

Things are plugging along here at St.Paul’s. Arrangements have started today to look into whether the proposed pain control plan will be feasible in PR; this will likely take some time. When things are set up, the aim is for Joey to be transferred back to Powell River hospital for what will hopefully amount to only a couple of days, then head home for rezeal. That is the goal, but we are trying not to get too psyched about it before it is actually reality. Tough not too get your hopes up though.

So far, today has been pretty low key. Had a couple of different visitors the last little while, including our friend Josh, who Joey went to Camosun with and our friend Jesse (he puts the Roper in “The Roper Show”), who just got back from doing a music tour across Canada. We were honoured to be the final stop on the tour and I was even more honoured to be given a ride home in his creepy white van. Beats walking!

K & J