This morning we got some good news: Joey is at the top of the BC list for liver transplant. Wow. Of course, someone else might get a transplant first depending on whether or not the potential donor is a match for Joey, but it’s nice to know that he is up there. We were in a celebratin’ mood this morning. And it was a relief to call Jackson and Ryan and let them know that they might not have to go through a surgery.
Which leads into my next update: Jackson is now waiting to hear about whether or not he is a match for Joey. Ryan started his phase 4 testing last night. Apparently, he almost jumped the gun on being a donor, as we hear he was nearly strangled by a set of headphones that they gave him “for his comfort” so that he could listen to the radio during his MRI. Looks like Joey has some connections on the inside. Dial it back a bit people, dial it back.
Last night and today were much better pain wise. This could be due to a couple of different reasons. His painkillers were adjusted again yesterday, but they also started to drain some of the fluid out of his belly and put him on fluid restrictions to try and slow the reaccumulation. The fluid restrictions are tough for Joey; he chronically has dry mouth from several of his medications, but so far he is coping well with that element of things. The tap and dustbuster-like bag attached to his side is another story, however. We thought he was just going down for an ultrasound and to have some of the fluid drained out with a needle yesterday, but instead he came back with a bag hanging out of his side and a tube poking out of his stomach. It is quite uncomfortable, to say the least. To say the most, it is prone to oozing, which means that his bandages need to be changed at least every 2 hours, or he wakes up with his pjs and bedding soaked in a stomach fluid. Ew. He is unimpressed. The hope is that the tube and bag will come out tomorrow after they drain another 2 litres (the aim is to drain a total of 6, plus all of the leakage, but they can’t drain it all at once or it could damage his kidneys. Insert painful sigh). It is pretty weird. They just turn on the tap (I am not shitting you, there actually is a tap), fill up a couple of the 1 litre med cups, then turn it off until the next day. The whole process is far too reminiscent of pouring draft beer. I will never look at it the same way again.
Regardless, last night Joey was feeling pretty darn good, so he roped Auntie Mel and I into a little mischief. He was reunited with his mini-helicopter yesterday, so he decided to take it for a spin around the patient lounge at 1:30 in the morning. This was a dangerous game, as he is still a rookie at flying the thing, Mel and I tend to laugh our asses off when we are together, and I am loud when I laugh. The helicopter would bounce off the ceiling, then the floor, then come cascading towards your head, where you would find yourself ducking and covering like you were undergoing some kind of bizarre earthquake drill. This is the most subdued shot I could get:
Afterwards, he and Mel decided to reorganize his room. I clocked out at 2 am. Joey clocked out for most of the day today, but was in much better spirits when he was awake. Hurray for increasingly adequate pain control!
And the birthday bonanza continues. Thank you so much everyone for the cards, well wishes, and prezzies. He is a very happy boy indeed:
Me thinks there will be some violating of the “no glove while dancing” rule for this game in the next few days:
Nice try MJ! Thank you to those who donate to the CF resource room at St. Paul’s so we can borrow a Wii and TV and bust out our finest dance moves. (Belt buckle, here we come!)
K & J