Today, Colin was definitely less sleepy although still quite congested and having a hard time keeping his oxygen saturation high enough. He received an oxygen blow-by all day and wore a mask when venturing out on the stroller. This required the hardware of an oxygen tank on wheels (absent the tank these tend to look like a strange umbrella stand) and one more attendant.
However, the multi-man operation was worth it, as Colin was able to venture to the play room and have some one-on-one time with Martha, the music therapist. She sang songs to him, including (after consulting with Mom and Dad to make sure that it wouldn’t upset him unduly because of the requisite references to favorite foods) one about Old MacDonald’s grocery store.
After the G-tube surgery, he has been too sleepy to stroll about as he has become accustomed, so it was nice to return to that routine, even with modifications.
Colin also began physical therapy again and made some positive steps forward — so to speak — during his session. Also, his sixth nerve palsy (controlling the movement of the right eye) has improved noticably. The eye now moves past the midline to look right. It may not track evenly with the left eye, but for anybody who has seen his eye movement since the last surgery, the difference is dramatic.
The eyes are the window to the soul, so they say. We as humans certainly have a keen ability to detect even very subtle abnormalities in the eyes and other facial assymetries.
Colin’s gradual return to facial symmetry is a heartening positive sign in his recovery. Of course, we want him to look and function like any other child, but there is also a certain selfishness in caring too much about improvements that are unrelated to the core problem, which is the cancer.
If we could make the trade, we would quickly exchange some assymetry for his life. Others have — without the guarantee of a complete and lasting cure. Indeed, he may recover now and suffer another neurological injury from treatment down the road.
In the face of these improvements, the pooling of cerebral spinal fluid near the incision has continued. The area is still soft, thus not demanding immediate attention, but the neurosurgical fellow referred to that area as Colin’s intracranial pressure monitor.
The point is well taken, and Dr. Wisoff opined today that we are very likely to have to have the shunt placed next week. In the meantime, Colin gets to have his opportunity to recover and the slim chance of starting to reabsorb CSF on his own.
Dr. Gardner has asked the keen question of whether Colin can receive intrathecal treatment at Memorial Sloan Kettering if he has a shunt, since the medication would naturally go through the CSF into the peritineal cavity. We are consulting with the doctors there and we suppose it is possible that the answer might drive the choice of specific shunt design. This is another reason to defer shunt placement for the time being.
There is so much for us to research that it can certainly get overwhelming. We have new help in the form of the Hassenfeld Clinic librarian, who visited us today. One of the new subjects for us is the feeding tube, which we’re frankly hoping to not have to get too intimate with.
The question isn’t whether we find the tube itself to be onerous in and of itself, but that there is already enough on the list. We are hopeful, especially given hints of recovery in other areas, that his swallow function is strengthening.
Colin, a tremendous fan of food, has not forgotten the association between food and his tummy, even though he hasn’t taken anything by mouth in weeks! Today, he received a slow stream through the tube, though not enough to satisfy him, so he pointed hopefully at Mom’s lunch tray. Sorry, kiddo!
We pushed all day to get the flow increased, a strangely arduous mission here at the hospital. At one point, we were told that he would get bumped up following a bedside chest X-ray (to assure that all the congestion hasn’t sparked a chest infection). However, this didn’t happen and then the general surgery resident stopped in to check in on him and agreed that it would be fine to double the flow rate.
Generally speaking, the discussion has been about increasing the rate of flow of a continuous feed rather than switching to intermittent or bolus feeds. The use of the terms intermittent and bolus is not consistent, as some people consider them interchangeable or preferrentially use bolus and others make an unclear distinction between them. Presumably, the bolus feed is a faster quantity in a shorter period of time than intermittent.
Colin had been on an intermittent (to some, bolus) feed prior to the installation of the G-tube. Some people believe that this method reduces digestive problems under the assumption that the stomach is designed to process food in meals rather than a constant stream, while others believe it is more difficult to manage for the child. The exact same set of symptoms requires a switch from one method to the other, depending on whom one speaks to.
When the nurse returned to change the feed flow, she actually turned it off, as she had been ordered to give him a break before turning it on for bolus feed. Or, rather, intermittent. This contradicted the order given by the surgical resident, but it is actually the floor pediatricians who make the decision on these matters.
Thus, the entire time that the general surgeon who performed the procedure and has been issuing orders about how to introduce Colin’s body to the use of the G-tube, it is a different set of doctors who have been issuing the actual orders to the nurses. This was evident from the very beginning, when he said that Colin did not have to start with Pedialyte (an electrolyte replacing fluid) but could have the more substantial Pediasure, which provides a complete balance of nutrients. Even so, the doctors started him with Pedialyte; when we pointed out the discrepancy in orders, the floor pediatric resident opined that it would be easier on his system. It wasn’t worth fighting over and one can see the logic to it.
Now, however, the discrepancy between simply doubling the rate and switching to intermittent/bolus feeds is more troubling — and amplified by the poor application of terminology. “They want to switch him to bolus feeds,” which is actually not even what he had received prior to surgery, is the kind of thing that makes you sweat as a parent to hear. Here we go, yet another issue that we have to pester everybody about to get to the bottom of.
More annoying still is the break (of unstated length) before the feed is supposed to begin. This means that we don’t even know how long to wait until we have to pester somebody to start the feed that we have to pester them about in the first place. Perhaps this concentrates the pestering into a single burst, but it is also puzzling that this seems to be one of those times when there is no floor pediatrician hovering about.
Of course, compounding the matter of questioning a pediatrician who can give us some satisfaction on the feeding question is the fact that we have, yet again, bounced between pediatric teams (red and blues teams) on the floor. The pediatricians are divided into the regular floor doctors and those that are devoted to oncology and epilepsy cases.
Colin had started out under the oncology doctors, then moved back to the general case team, and is evidently back under the oncology-focused pediatricians. As a result, the various doctors overseeing Colin’s care have changed and we now are so confused that we have no idea if a doctor/resident/medical student that we have ever spoken to is actually following his case at the moment. Frankly, we don’t give a hoot and will address anybody who is handy. At night, this is perfectly apt, as the doctors cover both red and blue team patients.
Fortunately, Colin’s parents have been consistently assigned to him for the duration (this admitted with a wry smirk).
With differences in navigating each hospital system, it seems that limiting the number of institutions that we visit will help us provide Colin with better medical care. This we say, knowing that there is a reasonable probability that we will spend time at one if not two other facilities.
If we do go to Mass General for proton therapy, that visit will likely last six weeks, with five days a week of anesthesia and irradiation. The lengthy course is dictated by the radioresistance of ependymoma, which therefore requires high doses for effective treatment. The application of radiation is spread out over time to reduce the ill effects on the little patient.
However, radiation is still off in the distant seeming future for us. We are definitely starting to explore our options now to gain a better understanding of how the various technologies might help Colin. It is amazing to think of how much accumulated medical knowledge will go into his treatment.
With his port and new G-tube, he is becoming the bionic boy (we can rebuild him!). What else will happen to him along the way? Bioluminescence? Web glands in his wrists?
There is a little boy who arrived today across from us and is slated to have a port placed tomorrow. He has been suffering from infections in the epididymus (part of the testicular duct system) that resulted in surgery earlier in the year. The other side is now infected and his parents are contemplating a second surgery that would render him infertile.
His mother is understandably distraught about having to make a decision that would permanently affect her child, but this equivocation is itself a sign of how much medicine and society have changed over the past decades. Her son has Downs syndrome (as far as they can tell, unrelated to his current affliction) and is benefiting from many advancements in medicine and developmental therapy.
Not long ago, it was generally considered reasonable to impose mandatory sterilization on individuals with Downs syndrome. At the time, children with Downs had a much worse prognosis, but interventions are now commonly available that give these families promise of a functional and satisfying life.
We can only hope that Colin inhabits a similar cusp of medical development that changes the prognosis evident in the existing literature on the treatment of ependymoma in children of his age.