Things are being changed again. A new pain regime is supposed to start today. The “new” long acting pain med that Joey is on that is making him drowsy will still keep going, but at a reduced dosage. Then, a new form of an old pain drug is supposed to start again. Hopefully there will be better success if these drugs are used in combination. Confusing!
Fingers are crossed for better success, but in all honesty, we’re feeling pretty discouraged. Hopefully we’re wrong and things will resolve themselves quickly.
K & J
Been in kind of a weird place this last little while. Not quite sure where we stand on things. Although the new oral pain med has been allowing Joey to have more time between IV pain meds, he has also been extremely sleepy lately. This is likely due to a combination of things: low hemoglobin, low iron, and the new pain med. However, my suspicion is that it is mostly due to the new pain med.
The whole low energy thing has made it extremely difficult for Joey to get out and do anything. He has on a few occasions, but they have been pretty low-key and he has had to really force himself because he is exhausted. Tough balance to strike between him getting the rest he needs and spending all of his time in bed.
At this point, I am not sure of what the doc’s next moves will be. I don’t know if this is a side effect that he will get used to, or if they will want to try something else, or just leave things as they are for a while.
Just thought I’d let you know.
Today was an exciting mail day. Hurray!
We received a package from Miss. Hunt’s grade 7 classes at Mountain Park Middle school and Joey’s room looks awesome now. It was a huge boost that couldn’t have come at a better time. Joey was having a sad day, but is feeling quite cheerful now. How could you not when your room looks like this:
Looks like Mountain Park students agree: Cystic Fibrosis does suck! Thank you everyone so much for the cards. We think it’s great that so many of you want to be organ donors and donate money to CF when you turn 18. Joey and I really appreciate all of the well wishes and we hope he gets a new liver as well. We hope he doesn’t have to stay in the hospital much longer either.
Brenna, we are sorry to hear that you are waiting to get a new kidney. We hope that you are able to find a donor and your transplant goes well. You must be one tough cookie – just like Joey!
We also really liked the note that read: “Dear staff get better food!!!” We couldn’t agree more. Seriously. One of Joey’s nurses told us the other day that sometimes when there are extra food trays, they will dare each other to take a bite of the meals. She said that the worst one she had ever tried was the tofu chow mein (pictured below):
That’s supposed to be strawberry pudding on the side, in case you’re wondering. Here are a few more examples to illustrate what we’re talking about. Some type of mysterious chicken dish:
Hello quality control! Those seem a little past “roasted”. Note the congealed gravy in the lower right corner.
Oh there’s more. Check out the “Baked Herb Fish”. VGH version:
St. Paul’s version:
Who loves cylindrical meat topped with brown mound?
And finally, my personal fav – the breakfast special. “Stewed poo”. Ooops! I mean prunes.
You see how I could become easily confused.
Joey said he loves Miss. Hunt’s classes! You guys are so great at cheering him up: both now and when he wasn’t feeling well in Toronto. Thanks for being so wonderful. We hope you have a great summer!
Kirstin and Joey
Things are ticking along…we think. Had a bit of a better day today pain wise. Hopefully the new dose/administration route is working. Either way we still have a ways to go, but our fingers are crossed that today was progress and not just a fluke.
Had a kick ass surprise the other night: sister Nikki popped in to say hi from the Kelowna crew. How much fun is that? We were very happy to see her smiling face…even if it was only for 45 minutes. Hey, some time is better than none.
Other than that things are pretty hum drum. Joey is managing an outing every day or two (usually pretty low key because he’s still very tired. The golf was a fun and much-needed anomaly). Kimberly cut me some bangs a few nights ago and we went to cardio kickboxing sans spouses last night. So much fun. Although my body is cardio kickboxing my ass tonight in retribution. It was still worth it!
K & J
Things are pretty much the same, except Joey has been more tired lately. He still came over for dinner last night though “because I’m mean”. Too bad toots. Air and proper nutrition are good for you. The tiredness is likely the result of a number of factors (blood loss during surgery, low iron, new and increased pain meds). He is currently getting an IV iron infusion which will hopefully help. Time will tell.
Pain med has been stable for the last few days, but they are trying a new way of administering it to see if we can get around the whole absorption issue. Lucky guy, gets to hold gross tasting liquid under his tongue for 2-3 minutes when he takes his long acting pain killer now. Not the hugest fan of doing this, but he is willing. Joey analogy: “tequila tastes worse and I used to do that willingly”. Way to suck it up, princess!
So that’s what the afternoon has in store. IV iron, gross meds, and possibly some Thai food (thanks Pam!)
K & J
Still no difference in pain control, but dosages have been tinkered with again. Hopefully it will not leave Joey a zombie (overmedicated), but I guess we’ll see. For now things are just ticking along slowly.
Actually had a fun day in the sun yesterday. Sister Sarah was over, so we went to a pitch and putt with her, sister April, and Keith. We had a blast, but Joey was pretty freakin’ sore part way through. He’s a good faker though, so things felt semi-normal. Just throw a sweater on over the PICC line, hunker down with some serious pain meds when you get back to hospital, and you’re golden. Here is some documentation of the fun that was had:
Happy Father’s day!
K & J
The ‘pons are gones. As are the additional blood clots that were making themselves at home up there. Good news: Joey’s going to be a “CF Honey”. Months ago, we saw a list in the sinus doc’s office of “CF Honeys”. While initially, Joey and I had pictured him in a red polka dot bikini tossing around a beach ball, apparently, that is not the true meaning of the term. It seems that honey is particularly beneficial with CF sinuses. So I guess my honey will be snorting honey as part of his new sinus care regime. Fun, fun.
No difference in pain control yet, but we expected that as they usually start by low-balling their estimate and then working up from there. The crummy thing is that dosages can only be readjusted every 3-5 days, so hopefully it will be re-examined tomorrow. After that it will be another 3-5 days before he notices a difference (or not) at the new dose and it can be adjusted accordingly.
K & J