Thursday, June 30, 2011
Here is James preparing to make his trek home. As you can see he is freshly rinsed, finally had a hair wash and got his hair combed (the iodine mohawk was becoming extreme). Most importantly for his healthy self-esteem, James is dressed in something other than a diaper and leads. He is also notably free of wires for the first time in over a week. As an only child first child/grandson (both sides)/great-grandson of many people, James receives more clothes to wear in any given month than you or I may in a year. It is highly likely that this is the first and last time that he will wear this outfit. He is an unreformed clothes horse.
Obviously, the most important thing today was that James got to come home. The reprieve is brief. Given how many surgeries James had in the last week (four, six times under general anesthesia) his body needs time to heal before we begin his chemotherapy. The upcoming week represents the last time in the next year that James will be able to engage in many normal activities, from going to the park, baseball games, or just playing with his friends. After he begins his treatment his immune system will become severely repressed, and we will be unable to enjoy many of these activities. Kara and I have decided to spend the next week doing all the things we won't be able to do for awhile. Go to the zoo. Go to a baseball game. Go to the arboretum. The store. Family pictures before James loses his hair. All of the things that we do with James that this chapter in our lives will interrupt. Our lives are changing irrevocably, and we'd like to enjoy the things we might otherwise take for granted beforehand.
Aside from James happily being allowed to return home today, the day crept by in much the same, tedious way that our non "emergency" days in the hospital have. James was scheduled "on call" (i.e., when they have room) for a surgery today to put in a port through which he will receive his chemotherapy. As always, this meant James couldn't eat after midnight, which makes for an angry, fussy James. This will make giving him medicines and fluids simpler, in the last week James' arms and legs have become a virtual pincushion of IV sites, arterial line sites, and blood work sites. In addition, the drugs he will get for chemo are too caustic to go through an IV.
This surgery- which after multiple craniotomies seemed almost passe to Kara and I- was performed by a different set of surgeons, the general surgeons, than his previous neurosurgical procedures. The difference in the attitude and the procedures employed by each is noticeable. The neurosurgeons and anesthesiologist have much more focus, a greater sense of importance, than that associated with general surgery, tonsils and what not. Although initially things were looking up as we went back at 8:45 for the surgery, this didn't translate into any action as we spent the next two hours waiting in pre-op for the surgery to begin. We watched Regis and Kelly and had time to get a good start on the view- channel options are extremely limited.
One other frustrating fact of life in general surgery is that the staff doesn't know what's happening. They're there to perform a procedure ordered by another doctor, one routine enough that doctor does not need to perform it themselves. In our case this meant a long conversation everytime someone asked for James' "history" forcing us to explain all of his surgeries and the fact that he had a brain tumor. In one instance a nurse mistook him for a girl. This led to many examples of what Kara calls "cancer eyes" the look on someone's face when you tell them your son has a brain tumor. It's cocktail of pity, sorrow, and sympathy. It's one I can usually do without. I know my son is sick. I do not need the reminders. When they took James into the OR this time we were barely concerned- we've become so inoculated to the experience that something as pedestrian as the port, while still surgery, seems minor, not worth the worry.
The port surgery went well, James came back hungry and even more exhausted. After James got back from getting his port, things moved very quickly as we were prepped for discharge. Within a few short hours, we were driving home, James safe in the car seat he arrived in eight days before. I remember thinking that I'd thought it strange when our first nurse, all the way back in general admission, needed to confirm that we had a car seat to take James home in. I never thought we'd have to wait so long to provide proof.
Home with James feels familiar but unfamiliar, everything is colored by what happened over the last week. We cannot go back to the way we were. James is different. We are different. I am trying still to find the positive, and today Kara and I are thankful we have our boy at home again. We are thankful we can treat him to a week of normal life before we begin his arduous journey through treatment. We are grateful for a night of sleep where only James, not those attending to his needs, can interrupt us. i feel as if we were sprinting the 100 meter dash last week, and we've been given a weeks rest to prepare to run a marathon.
Thank all of you for your support as we transition into the next phase of our journey. Your thoughts and prayers are felt by us always.