The Good, The Bad, and the Warcraft

I know, bad title, it came to mind and stuck. People have asked for an update so here it goes as best as it can. In many ways its been a typical year, we have struggled with weight, we’ve struggled with pain management, we’ve struggled with sleep issues, and the orcs have been a definite problem all year long. It’s all just gotten bigger, Michael is on TPN which is nutrition that is administered through a permanent IV, but it’s been a struggle to keep weight on him even given this direct nutritional support. We’ve found a zone that we’ve been able to stay in but it’s up and down and we are maintaining a weight that is the lowest since we originally beefed (and I use that term jokingly) him up with the start of TPN. TPN days (every other day) have become a huge struggle as he has started to feel so terrible when on it, sick, shaky, unsteady, extremely tired and lately his face has been puffy by the time we end up tapering it down early. This week we’ve pulled all the lipids out (the fat and protein goodness) and lowered his hours down to what we’ve found he can tolerate (7 hours down from 12 hours), we start it early, drug him, and then get him off around when he wakes up in the afternoon. This is the best we can come up with but it means pushing shakes to buffer the calories he will be loosing. The puffiness they informed us this week is due to his capillaries breaking down, another reason for putting the TPN down and taking out the lipids.

Pain management has also gotten bigger although we have come up with a pill cycle that seems to do the best it can for pain management and not knock him out, we’re up to 15 pills a day and he still has pain breakthrough but on most days it is being…managed.

And the orcs, well, those are much more difficult to manage! We’ve been playing World of Warcraft for a year now, we both have 85 characters (his a rogue, mine as a healer), run a small guild and have slowly sucked a few friends and family into the mix. I wrote this a few months ago for a “post your story” on the Blizzard site:

Nearly a year and a half ago we woke up early in the morning, converged on the hospital with family and friends, and prepared for my son’s spine surgery. Due to years of ill health with a rare syndrome, low lung capacity had caused his spine to start to bow and twist until the spine had pinched his airway to his right lung nearly closed. For a year before was in a wheelchair for anything other than short walks, on O2, getting nutrition through an IV to bolster him for the surgery. Two bags of platelets later and we nearly lost him as his lungs filled with fluid and he struggled to breathe, the surgeons explained that surgery now or ever was not possible.

Five months later, on increasing oxygen, pain meds, and still getting nutrition through a semi-permanent IV now to keep him as healthy as possible to enjoy life as he could, more and more confined to his bed or the couch, my brother (who is living in Mongolia) emailed me with a request: find a game that he and my son could play together online and talk on headphones with. I started digging around and quickly zeroed in on World of Warcraft. After testing it out, I actually had to convince my son to give it a try, he was a console gamer through and through. He rolled a dwarf on my account and messed around with it a bit with some “encouragement” from me and started getting interested. My brother’s internet connection was spotty at best  so it was a bit of a process getting him set up but probably a month later and they were both online, on dwarfs, and running about with their headphones on. Ten months later and my son runs a small guild with a growing list of friends and family, has an 80 [now an 85] and a few alts, and they are still running their dwarves together with a croc as an enthusiastic side tank. My brother has a “batmobile” cellphone that we can text at any time when my son is having a bad day and jumps on day or night to distract him. Last night we ran the streets of Stormwind pushing back the invasion of the elementals and capped the night off with the three of us (and the trusty croc) sneaking our way through Blackrock Depths Prison for a quest.

I know it’s “just a game” to most people who enjoy it to varying degrees, and that people outside of the game cannot understand the draw, but for my son it has been a lifeline that keeps his mind active and his fingers flying. I sit in the living room sometimes when I’m not on with them and hear him yelling to Mongolia over the headset to run this way or run that way or grab that quest. I hear him laughing with his uncle after a bad day or even from a hospital bed and I know that I will always be grateful that the world of Azeroth exists.

Craig has been offline due to some computer issues for the last month and we hope the hiatus is soon to be up because we miss his presence, though it looks like Michael has sucked yet another uncle into Azeroth, this time possibly fighting on the side of the orcs, oh the betrayal!

So, it has been a long year, we do the best we can to cope,  which is sometimes good and sometimes not so good, but despite the pain, and the weight issues, and yes, the orc infestation, we have a great many people who love us and support us and we get by the best we can one day at a time.