Today was a great day in my books. Mind you, my books are written from an odd perspective, but if you call running errands and getting out of the hospital great, then we had a great day. We were very, very happy about that.
Went something like this: waited until pain was under control enough to function (noonish), took calendars to the printers, did miscellaneous errands, went back to hospital for another pain shot, waited for an hour to get a new IV put in before shot could be delivered/hoped it wouldn’t have to be inserted into Joey’s hand due to difficulty in finding a vein that hasn’t been ravaged (it’s in his arm – yeah!), went back out to do more errands, ate linner (cross between lunch and dinner) out like normal people, tried not to puke (Joey not me – this was also successful. Neither of us chundered, although I wasn’t really in any danger of doing so, so I guess I shouldn’t be too proud of myself on this account). Then back to the hospital for pain control. How fantastic is that? He got some air, they found a vein, he didn’t puke, and his pain was more controlled today. Hopefully things continue on this track.
As for timeframes, we don’t have a firm one. It seems to depend on who you talk to, but it could be anywhere from 2-8 months from now and that’s only if one of the donors who is currently being assessed is a match. If none of the three are matches, then we are right back to square one. But hopefully at least one of our volunteers is a match and decides to go ahead with the surgery.
Happy Friday everyone!
Cracking jokes is great, as are wishes that Joey feels “less bad” soon. That’s actually a more realistic assessment of the current situation.
Doc increased pain meds again today; will take a while to see if that works. Not vibrating today, so that’s an improvement. Was still in a lot of pain, but got some air on a couple of occasions today: once for lunch and once for a dinner that he just picked at (was in too much pain to eat the whole thing by the time we went and got it). He was still clinging to his chubby chicken when I left tonight and refused to let me throw it out. At least he ate some of it and appreciates the idea of food, right?
Joey watched Sherlock Holmes tonight with Aaron, while Tara and I ditched them for a more entertaining evening (drank coffee and picked out bubble bath. We know how to par-tay). It was fun visiting with them. Sad they have to go home tomorrow, but very happy they came.
After consulting with the pain clinic, it seems like we are theoretically moving towards better pain control, so hopefully that pans out soon. If not, they had one other new idea, but the plan right now is to wait and see how these changes go before introducing a new drug with new side effects into the mix.
Today was horrible pain wise. Horrible. He was actually vibrating in pain until this evening. The best relief he got today was “still in pain, but classified as uncomfortable, rather than vibrating”. It is very hard to watch and even harder to go through. He looked and felt like crap today.
One more donor started his work up today. The other two potential male donors who were matched on the basis of blood type are unfortunately not able to do it. Roller coaster. We are very appreciative of the fact that they were honest with us so that time wasn’t wasted doing medical tests on someone who in the end can’t have the surgery, especially when we can only look at three donors at a time. To them and everyone else who is considering or has considered, thank you.
The doc is consulting with the pain clinic in Vancouver to see if they have any ideas that haven’t been tried yet. Hopefully they can come up with something that will work. This sucks.
Managed to pleasantly surprise Joey with some out of town visitors and a gluten free pizza party tonight. Nothing beats laying around and doing nothing with loved ones. Except maybe pizza from the joint.
The weekend was rough for the most part. Joey has been in a lot of pain, hardly slept at all last night, and has been quite down in the dumps about his situation. To say that this has not been an easy time is an understatement.
On a more positive note, he was able to break out of the hospital for a couple of hours again today to lounge in his own bed, eat a home cooked meal, and visit with some friends. It was a lot of fun. We try to seize those moments when we get them. I’m just sad that there aren’t more moments like that. Being stuck in a hospital room is pretty darn depressing.
Hopefully the doc will have some new ideas about pain control tomorrow.
K & J
Thought maybe some of you potential donors out there might be able to relate to this message we received from a friend when we first heard about the whole living donor thing:
Just read the poopie news. Being a female midgit with a BMI of 21 probably makes me kind of useless in terms of donation, hey?
At first I thought “I can do it.”. Then I thought “But give up wine for a time, I don’t think I can.” Then I thought “Shut up you stupid *explicative deleted*, this is Joey we’re talking about.”
I will look into my bottom of the barrrel viability.
PS I am kind of terrible at being softly sympathatic.
Love it! Nothing beats compassion mixed with brutal honesty in my books. Does she know me, or what?
Some exciting news on the donor front; yesterday we found out that we have a couple of guys who are matches on at least blood type. Woo hoo! They are taking the weekend to learn more about being a living liver donor and if they’re still feeling good about it on Monday, we will start their assessments and put Karley’s on hold. Then they do the medical tests and we wait to find out if any of them are actual matches. Please cross your fingers and toes for us.
Heading into the HQ now to find out what type of day it will be.
Today was a painful day for Joey. In spite of that, I was able to extract him from the hospital for brief outings. Don’t know which was more exciting; our breakfast date, the care package he received from Koren, or the opportunity to nap at home in his own bed. Today was our day of attempting to bury our heads in the sand and pretend we’re normal. Going to try and do that again soon if at all possible.
We are back to getting hunkered into his room. Received some new decorations that cheer the joint up. Also have a cot on standby for me for some much needed napping. You can hardly walk in the room…but tough shit. I’m tired.
And on that note, nighty-night.