Today, we continued to put Colin through the paces. He sat up in bed a few times, sat in Mom’s lap, sat much more upright when he was in bed, and (drum roll, please) started on the tilt table with physical therapy today. It’s a fairly self-explanatory device that makes him look like he’s about to get shock therapy treatments, minus the electrodes. A crank on the side tilts the table to the desired angle, and at the maximum setting, the patient remain fully upright.
For now, because of the C. Diff, Colin has his own table. It’s a smaller pediatric version that has straps across the chest, hips, and each of the legs. The straps allow him to gradually and safely begin bearing weight on his legs. The table now lives in his room and we will get instructions on how to use it with him over the weekend.
Part of the exercise is simply to reacclimate Colin’s pulmonary system to the rigors of being upright, so his heart rate is closely monitored for signs of stress. Though panicked at first, he did quite well and tolerated a half-hour at a fairly steep angle (something greater than 45 degrees but short of fully upright). He had not fared nearly as well at his first attempt at the table, which was before the fungemia.
Tilt table therapy provides a great opportunity to read books with him interactively, since it is a convenient position for him to reach out and touch the pages. This also distracts him from the physical aspect of the exercise and any possible anxiety he has about it. Although it’s tiring for him and he is happy to get back into bed when he is through, he seems to recognize how good this is for him and is equally eager to get back on board.
The C. Diff is still here and in some ways has resurged. We will spare you the details, but we typically describe Colin’s output in terms of food; mashed banana, butternut squash puree, and sea urchin come to mind. The terms “formed” and “loose” are vague and also don’t comport the color, which we feel has some importance though this idea has never been fostered by the medical staff.
Our diaper rash management has been working and, despite the intestinal setbacks, his derriere is improving significantly. Based on a quick conversation with the famous Dr. Levy, we are now administering Questran powder orally (through the G-tube) in order to bind him up and slow down the diarrhea.
This seems to be working, and the break in production has accelerated the healing in his tush. The diaper rash is far from trivial, as it represents a dangerous (risk of infection) and uncomfortable complication, especially while he is traveling long distances. It also hampers his ability to perform physical therapy, which is crucial for his improvement.
However, we are aware that C. Diff can be extremely resistant to standard therapies. Today, the Infectious Disease fellow informed us that, if it remains refractory to treatment, we could resort to a fecal transplant. That is probably worth repeating, with emphasis: FECAL TRANSPLANT.
Apparently, it is possible for a close household member to “donate” fecal matter to the patient, whereupon it is “transplanted” via G-tube (or NG-tube, as appropriate) to the patient. Alternatively, one can apparently use an enema to deliver the transplant.
The reason that the donor must be a household member is unclear. It may be a medical prerogative or, more likely, an overwhelming ick factor. The oral delivery method makes everyone who hears about it cringe (hey, folks, that’s what the NG-tube is for!). The fellow did not explain the mechanism by which it works, and I was too flabberghasted to ask.
When I suggested that the fellow present this to the pediatricians as a possible future option for Colin (as his parents, it somehow doesn’t seem so horrifying to poop in a cup if it will help), she demurred, fearing ridicule. She defended herself, explaining that this is sometimes used for elderly patients and actually works. “It’s published in the New England Journal of Medicine!”
Neurosurgery also informed us that they are no longer recommending any delay in adjuvant therapy related to the incision wound. This is healing nicely, and the oncological concerns outweigh that risk. Read: get a move on.
Today, Mass General’s pediatric tumor board saw Colin’s case. Unofficially, we gather that they have approved Colin as a candidate for proton therapy! This is tremendously good news, as it can be very difficult to get on the list, even for patients who would demonstrably benefit from proton therapy.
We credit this boon to Dr. Gardner, who sends many patients there and has a great working relationship with the doctors. The official word on his status will be communicated between the doctors, but we are heartened at this preliminary news.
Although St. Jude has received the pathology slides and the latest MRI, they have not yet reviewed the case but will do so tomorrow. Based on everything we are hearing (Dr. Foreman in Denver, whom we spoke with earlier in this process, also recommended the CCG-9942 protocol to precede radiation), the chemo before radiation improves Colin’s prognosis. It may also reduce long-term effects of the radiation itself by delaying it closer to his third birthday (we may even choose to wait until he is three).
Therefore, we anticipate that St. Jude will continue to recommend the chemo. Although there is an element of wait-and-see to our approach, as it is possible that St. Jude will not see the need for chemo, we are concurrently strategizing the best way of transporting Colin to Memphis and whether it will be necessary to use a commercial flight to do so. While he doesn’t have intense medical needs that would necessitate an air ambulance flight, he also would have difficulty traveling like a typical passenger.
Among other things, we are looking into suitable FAA-approved car seats that recline. First and foremost, however, we are rehabbing him so he is more accustomed to sitting up and greater activity. Given his response over the past two days, we are encouraged that he could be on a flight fairly soon.
Colin will be missed at NYU, or at least the staff here have charmingly convinced us of this. Today, when one of the residents wanted to look in his mouth (something has been bothering him all day; the current theory is that it is teething related to a wisdom tooth), he readily opened his mouth and she exclaimed, “The best patient ever!”
Dr. Gardner described him as “the mayor of 9 East” since he is so popular with the ladies that two nurses sat with him while we went to look at the latest MRI. Although we find this fairly unremarkable of Colin, who has always garnered friends, it is a bit of a surprise given his relative lack of affect and general inactivity since surgery.
Thus, they could simply be appealing to our parental vanity with such comments. Or Colin’s fundamental appeal is so evident, even through the haze of neurological deficits, that he wins over fans no matter what. We’ll stick with the latter theory.