Today marks five days since D's colectomy (i.e. complete removal of his colon, plus some). He had managed to stay healthy through the wedding, but sure enough, a week later he was sick again. After several trips to his doctor in NY, it was decided that he would have surgery to remove his colon (infected from Ulcerative Colitis) that has been bugging him for over four years now. For once, a doctor actually explained all of the options - complete with pros and cons. After spending more time on prednisone (a steriod) than off in the last two years, alternative medical therapies were suggested. One was 6MP, which would require bi-weekly blood tests to make sure his white blood counts didn't fall too low. At this point, there is no knowledge of what the long-term effects of being on this drug would be. The other was Remicaide (I might be spelling it incorrectly) - which is basically a several-hour-long infusion that he would have to come in and get bi-monthly. And the other option was surgery. After four years of being on various medications and dealing with side effects that are sometimes worse than his actual condition, D chose surgery.
The weeks leading up to the surgery were stressful, to say the least. We were told he'd have to have three surgeries. The first would be to remove his colon and install an ileostomy. In the second surgery, they would go in and build an internal "pouch". That would have to heal for a while, and then he'd have his third and final surgery, which would take out the ileostomy and begin diverting everything through the pouch and back the (modified) "regular" way. This whole process was going to take anywhere from 6-10 months. So we mentally and emotionally prepared ourselves for almost a year of him not being able to work, or be very physically active. We also were not entirely sure what the various recovery processes would be. There were a lot of unknowns coming into this. There was also, of course, my completely unfounded fear of him not making it through the surgery. There's only a 1% chance of death occurring during this kind of surgery, but of course I'm paranoid. I worked hard not to let him know my fears, or to let them get the best of me (definitely did a lot of praying!)
So Tuesday was the big day. His mother took the day off to sit with me in the waiting room. We arrived at the hospital at 5:30 a.m., following the instructions to go to valet parking, and then look for the guy in the tuxedo waiting for us in the lobby. His mother and I were both pretty sure that this was a joke, but sure enough, "Mike" was in a tuxedo waiting to meet us! He gave us a newspaper and some patient information, and then escorted us up to the third floor for pre-op.
The nurse had originally told us that the surgery would last 2 and a half hours. The waiting room had this neat electronic board that told you when people (identified by number) went into the various stages of pre-op (3), then to surgery, then to recovery, and finally to their room. We anxiously watched the board for three hours... then three and a half... then four... Finally, after five hours of being anxious, saying a lot of prayers, and discussing the entire Fedchak family history with my mother-in-law, the doctor came out to see us. The surgery was a success! Not only that, they were able to do two surgeries in one, not only taking out his colon but also making the pouch! Whoot! Apparently, the surgery was supposed to take five hours (the nurse was wrong), so nothing went wrong at all.
After spending some time in recovery, he was transferred to the "penthouse" - the 16th and topmost floor of the hospital, with large private rooms that have reclining chairs and fold-out couches so they are "family friendly". He even has a great view of Lake Erie. I didn't know hospitals could be so swanky, but it sure has made staying here overnight much easier! (Even if the couch-bed is as hard as a rock - I just keep telling myself it's preparation for all the camping we'll finally be able to do this summer). Most of the staff here is fantastic - very friendly and helpful. One of the nurse's aides keeps bringing me the extra meals, so I haven't had to worry too much about getting food (what meals I don't get in the room, D's parents bring to me when they come visit).
The recovery process has been difficult. The first two days were relatively easy - the anesthesia wasn't entirely out of his system, so he slept a lot. He has an almost continual flow of pain medication, so sometimes he's loopy and other times he's rather coherent. As he's gotten to start feeling "better," though, he's gotten to feeling worse. We took a tally and counted 7 different tubes coming out of him at one point. Now that he's more fully aware of what's going on, this is starting to wear on him. Also, the euphoria of surviving the surgery and already having the pouch in is also starting to wane. So far, post-surgery, he's had some blood transfusions, a chest x-ray, an inhaler prescribed, lots of random medications given (to prevent blood clotting, nausea, infection, pneumonia, fluid build-up, etc.) The latest news is the "wound VAC" - which is quite possibly the most interesting thing I've seen in a long time. Basically, his incision runs from just below his sternum to the top of his pelvic bone (barely skirting around his bellybutton, making it somewhat hurricane-shaped). He has 12 staples holding it together, but the top and bottom 2-3 inches were left open in case of infection, etc. The purpose of the wound VAC is to close the incision by encouraging the tissue to grow together again - without using stitches or staples. Using negative pressure (i.e. a vacuum), the machine pulls the wound closed using special sponges cut to fit in the open parts of the incision. It does this slowly, so there's a bit of pressure but doesn't cause too much pain. This method apparently helps keep out bacteria, encourages new tissue growth, and will make the scar much smaller. Now that I've seen the entire wound - open parts and all - I'm really interested to see what it looks like after it heals entirely.
Tomorrow is my last day here at the hospital - I must return to work on Monday. D will be in for another 5 days or more, most likely. He might get the tube out of his nose today, which is very exciting! They've clamped it down to make sure he doesn't get queezy, and after a few hours they'll take it out. I think this will help greatly improve his spirits. It will be hard to leave while he's still here, especially because I've been doing a lot of the stuff a nurse's aide would do - like helping with washing, etc. But I'm hoping that in a few days he'll be a little more self-sufficient and will be able to do more on his own. Today he walked about 25 feet with a walker, and he's slowly getting stronger every day. He's being incredibly brave and patient through this entire process, and fortunately is not letting an macho ego get in the way of him getting better! The plan from here on out is that he'll stay with his grandfather (who's home all the time) for a bit after the surgery, and should then be able to come home. It will take about 6 weeks weeks for him to "normal" again (whatever that means). After 8 weeks he'll come back in to get x-rays of the pouch, to make sure it's healing okay. If the x-rays turn out well, then we can schedule his second and FINAL surgery to reverse the ileostomy, hopefully sometime in early June. That means by the 4th of July, he should be all healed up and ready to live life again!
We've already started planning our "new" life together, and this will include all of our favorite foods like ice cream, pasta with red sauce, Mexican, and even a beer every once in a while. We're planning lots of camping trips and hiking adventures for the summer, since we won't constantly have to worry about where the bathroom is, or if he'll have the energy to do it (he won't be constantly anemic anymore!) We hope next summer to take some time to hike part of the AT. He's worried that I won't like him once I get to know what he's "really" like - with all sorts of energy for causing mischief and mayhem. I'm just excited that for once, I'll have to work to keep up with him instead of the other way around:-)
