Today, Colin was even more alert and had a busy social calendar. Aside from the requisite physician and proto-physician visits (more on this to come), he had two visits with the two music therapists, physical therapy, and his customary strolls.
Physically, his body is showing the effects of his long hospitalization, medication and period of inactivity. The muscle tone in all of his limbs is visibly affected — his entire physique, which was always reminiscent of a 19th century strong man, is less thickly muscled. This only underscores the need for unrelenting physical therapy both by the actual therapists and anybody who happens to be bedside.
Neurosurgery applied a gauze to the suture line this morning to see if it would collect fluid (fluid = bad). Colin wasn’t very happy to have the fancy fruit hat back on — the “one size fits everyone” mesh looks like the foam covering placed on precious fruit sold individually like Asian pears.
The shunt question is, unsurprisingly, important for Colin’s eligibility for the Memorial Sloan Kettering trial(s). This knowledge compounds the existing anxiety over his expected shunt dependence. The catheter for the shunt is already in place in his skull, although we didn’t realize that until reading the post-op radiology report for the follow-up MRI (ed. much later, we found this not to be true and that it was a misreading by the radiologist).
Today, we discovered that the much-deliberated and entirely confusing question of his feed schedule was, in fact, the product of a miscommunication (perhaps being generous using this word). The surgeon’s orders were misconstrued, as he had intended to gradually increase continuous feeds before moving to a schedule of intermittent feedings. In the morning, he shifted back to the original plan, though he decided not to reduce the total feed level since Colin was tolerating it fine. By tomorrow, Colin should be at the same rate he had been prior to surgery, as measured by the continous feed.
The resolution of this issue is frustrating at best. Indeed, we clearly identified an area of discrepancy and brought it to the attention of the resident watching him. It happened at night when there was no attending physician; should we have requested that the attending physician or the general surgery team be paged?
As we could tell in the morning, the situation was inane enough to cause a good eye roll in the surgeon, but it didn’t result in a bad outcome for Colin. All the same, we keep running into reminders that the individuals with the greatest control over medical details often do not have the best information.
Also, we are being taught a real distrust of sub-doctors practicing on our child. A quite literally painful example of this was the general surgery resident who came to remove Colin’s dressing. She looked quite sweet and nice and in other circumstances might look like a suitable babysitter.
However, she proceeded to set up the removal of the dressings and the scant stitches without benefit of adhesive solvent or pain relief. There is a smelly but effective adhesive solvent that is very helpful, especially when taking off large pieces of Tegaderm, as in this case.
When Mom realized that this was not just a typical site check, she scurried to get packets of Uni-Solve, which the resident was not prepared with. Uni-Solve works best when allowed to soak into the Tegaderm, and this does require a modicum of patience, with which this particular resident was not equipped. The removal was needlessly harsh, despite much maternal fussing, and caused Colin a lot of stress that was entirely avoidable. Also, Colin’s pain could have been minimized or at least more quickly dulled if the resident had inquired with Colin’s nurse about the state of his pain medication.
One possible conclusion of this incident: no more residents laying hands on my child. Perhaps this is being unfair to residents, many of whom certainly possess the gene for compassion rather than having to learn at a much later date. However, I don’t necessarily know the difference between the two. It would be much more convenient if they simply wore tags with important information, such as “awkward but knowledgeable,” or “pretty and mean,” perhaps, “empathy-deficient,” or “fatigues easily; no sharps.”
In the absence of useful notation, we lean toward extreme caution when dealing with proto-doctors of all stripes; we would not be the first.
Today, there was a RMDH camp outing to the Botanical Gardens in Brooklyn. The director of the camp is an energetic, meticulous young man with a shock of red hair. He seems too young for the job, with perhaps his enthusiasm consuming any gap in experience.
On the bus ride to Brooklyn, from a seated and well lit vantage point, the small scar from the insertion of a central line (Medi-port like Colin’s) was evident on his neck. It is a distinct size, angle, and location, unmistakable to one who has closely scrutinized even just one other exemplar.
That thin slanted blemish shed new light on his qualifications for the position and dedication to RMDH — the only place he ever wanted to work, by his own admission. When summer camp is over, he assumes the role of director of activities. Although he is clearly there for the kids, he also serves as an example to the parents there of what we want our children to become: cured and generous of spirit.
Through the course of many treatments, his mother so dreaded the ill effects of the residents that she evidently fended them all off, only allowing real doctors access to her boy. It seems that there is no guest at RMDH who doesn’t have a resident-related horror story (hopefully all of averted disaster!), and this is surely true among any parent whose child has endured significant hospital stays.
Keeping residents away doesn’t entirely address the matrix of problems (that alone wouldn’t necessarily have prevented the contradictory feeding orders), but this comes down, as always, to the question of empowerment. For instance, the next time, the resident slows down the dressing removal or gets ushered out of the room. A quick outburst alone would probably have shocked her into temporary paralysis that could have effected the necessary change in the procedure.
As always, we have to manage the scale of these issues and calculate which battles are worth fighting. Watchful capitulation generates its own frustration but simultaneously alleviates a different anxiety. One could expend incalculable energy wrangling over every detail, possibly at the cost of allowing the thread of a weightier matter to slip through our fingers.