Colin’s surgery on Monday went swimmingly, a marvel of coordination between the general surgery and neurosurgery teams. The doctors assembled in the play room and worked out which side of his body each would use; both involved tunneling procedures that necessitated that their lines did not cross.
In the end, the mediport went in on his right side close to the heart, where the catheter is completely invisible because the entry point is below the clavicle. The original mediport was on the other side, closer to the midline, and the insertion point was on the neck, so the catheter snuck above the clavicle, making it uncomfortably visible. Also, the new mediport is in a fattier part of his chest, so it does not stick out prominently. There is probably some other difference in the physical characteristics of the port itself, such as the diameter (nurses here commented that the port had a small diameter).
The shunt wends its way from Colin’s head, behind the ear, along the neck, on his chest, and into the peritoneal cavity. Although this is considered surgically a relatively routine procedure, it still seems gruesome to think about whatever unknown tool is used to thread the chubby needle of Colin’s body.
When Colin returned from surgery, his body was bruised, his entire face puffy, squinting his eyes nearly shut and his lip jutted out on one side like we have never seen. It generally had the effect of making him look like a seasoned prize fighter. The lip in particular inspires comments, especially from women, who are most likely to say something about how pitiably cute and tough looking he is.
Our refrain: “You should see the other guy.”
We have observed swelling in his face with the earlier neurosurgeries, since they have operated on him face-down. This time, the effect seemed to be exacerbated by edema, and for whatever reason, his lip did not survive intubation as well as it had in the past.
The swelling has come down a bit, but at times it’s difficult to tell if Colin is awake or asleep. We don’t have the heart to put the eye patch on while we surmise that his vision is already so badly occluded by the swelling.
Colin is also sporting a new “helmet” dressing, which applies pressure to the shunt line and hopefully makes it less visible. The surgeons also cleaned up part of the old incision that was spreading and drained the pseudomeningocele, the pocket of CSF that had been collecting on the back of his head. With the shunt, we hope this area will heal better.
At night, Colin’s heart rate continues to drop quite low, though the effects of the shunt aren’t necessarily immediate. The surgeons aren’t concerned, but this continues to be something that the floor pediatricians stress about. Today, Colin finally received the blood transfusion he had successfully avoided on Sunday following diuretics. The balance on all of this is tricky; they transfused him to bring up his hemoglobin, followed immediately with additional diuretics to remove the water that comes along with the blood. The transfusion process is closely monitored and he had no problems. We look forward to him perking up a bit with the new red blood cells.
Because of the concerns about fluids, we are starting to talk about changing from the Pediasure he has been taking for some time to something more densely nutritive. However, this could potentially create problems with the diarrhea (which is now improving), so we have got to tread carefully. The diaper rash was close to resolved, with much of it healed completely or nearly so. We even stopped giving him the medication for the C. Diff, they took the red contagion sign off the door, and we readied for a roommate. However, after scant hours of freedom from the taint of pestilence, the reappearance of diarrhea has again put Colin in isolation. No sooner did we joyfully inform visitors that they no longer had to don gown and gloves to enter the room than we had to reinstate the policy.
Overall, everybody who has been following him regularly seems quite happy after they examine him, diarrhea notwithstanding. The consensus is that he has turned the corner. His movement has improved since the weekend, and he is now high-fiving again. The neurosurgeons predict a marked improvement over the coming days (and longer).
Of course, the tumor itself looms darkly inside his head, the constant X Factor in the equation of Colin’s health. An MRI on Thursday will tell us more about whether there are any changes in that department as well as give us a better idea about the metastasis – we expect to go over the results on Friday. This is a nerve wracking exercise that we will have to get used to. The focus has been so honed on his immediate medical state and general discussions about treatment plans that the tumor itself has appeared to fall by the wayside as a concrete threat.
As we approach a course of treatment for Colin, we have to weigh many different considerations, including the timing and feasibility of rehab; the chemo protocol and schedule; the possibility of engaging in the trial at Memorial Sloan Kettering; the possibility of exploring other treatment options if the chemo does not work. There are also broader family issues like the ability and need to work; go to school; maintain a functioning household.
Where is the best place to accomplish all of this? With the school year fast approaching, we need to figure out if it will be possible for Aidan to return to school at home or whether we will have to register here in public school in New York. Fortunately, our residency at the Ronald McDonald House allows us to consider that seriously. We hate to think of so severely disrupting Aidan’s arc of schooling, but this is a fact of our life and essentially relocating to New York may be more feasible (even if Colin spends much of his time outpatient) than the alternative. Realizing the relative complexity and fragility of his medical state, it is hard to imagine that he will endure any course of chemo without at least some time inpatient.
We feel the matrix of decisionmaking closing in on us. The threads pull together more tightly, slowly resolving a more clear picture, or at least a smaller window.
As ever, we rely on our ever-widening group of supporters. The messages that we receive from loved ones and strangers alike make a huge difference in our daily lives. To follow up on our comment about negative feedback following the article in the Danbury News Times, we appreciate the boost we received from many people. The positive heavily outweighs the negative (in this as in many other things!), and we don’t want the actions of very very few to diminish the wonderful generosity of spirit that we have enjoyed from the beginning of our journey to help Colin.
As much as we don’t want to be judged, we refrain from judging the judgers (this sounds deliciously Rumsfeldian), who have to live with whatever bitterness or ignorance inspired them to speak uncompassionately about a family in crisis.