Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

October 29, 2009

Breakdown Lane

St. Jude is a superhighway of cancer care for children. Colin ends up in the breakdown lane, much to the chagrin of his team (including his family). He is a patient who constantly challenges the staff and the system, ignoring all of the assumptions and common pathways.

On Monday morning, Colin went in for surgery to remove the infected port. We had expected them to simultaneously install a PIC line in order to maintain good venous access, but this was not done because of lack of confidence in the peripheral blood culture, which to that point had not “popped” the CO2 sensors.

The procedure to install the PIC was moved to Wednesday morning, then cancelled by Dr. Gajjar, who felt it was too soon. On Wednesday at around 3 a.m., the peripheral culture started growing yeast; had the PIC installation remained on the schedule, it would have been cancelled.

All of this threw an enormous wrench in the system. Our assumptions that the infection was limited to the port were incorrect, although the length of time needed for the peripheral culture to come back positive was encouraging as to the relative strength of the infection in the bloodstream.

We were advised the Infectious Disease might suggest a CT scan of the chest, abdomen and pelvis to check his organs for “fungus balls.” We don’t know if this is a technical term, but it certainly is nothing like cheese balls or nut balls. Apparently, fungus loves the lungs and spleen in particular. Of more acute concern is infection of the VP shunt, which could be tested by tapping the shunt, a procedure that itself introduces risk of infection. There is also the possibility of infection in the eyes, as we had learned during Colin’s first bout of fungemia.

Our understanding so far is that, because Colin clinically appears much improved and afebrile, I.D. does not want to order any of these tests, nor do they want a repeat of the echocardiogram (the first echo performed on Monday did not show any signs of heart valve vegetation but the cardiologist mentioned the venous catheter, which had been removed earlier in the day, thus generating minor concern about the “artifact” in the right atrium).

The thought is that the anti-fungals have effectively protected Colin’s system and are clearing any stray fungus. Furthermore, the agent they are using, mycofungen, is effective in the CNS, adding an extra degree of comfort regarding the precious shunt. The blood infection is assumed to be secondary to the port infection, since it took so much longer for the peripheral culture to turn up any activity.

Interestingly enough, the cultures from the port itself and the pocket it sits in have so far remained negative but at least the port culture is expected to eventually pop. Dr. DeWire suggested that the anti-fungal treatment has greatly reduced the virulence of the fungus.

In order to get the PIC line in, we have to have a negative peripheral culture, and the culture from Saturday, which everybody assumed would remain negative, no longer will serve that purpose. Thus, Colin had a peripheral culture drawn on Wednesday evening. The process is grueling and absolutely awful for him.

The first nurse who attempted it failed after two sticks. They summoned an ICU nurse, who got blood but only 1.5 mL, half of what was requested for the blood culture. The lab didn’t complain, however. All of this took place in a separate procedure room, a strategy intended to make things easier for Colin, yet only a drop in the bucket of what he has endured.

On Monday night, his trach plugged off and a rapid response team came and changed the trach. He seemed okay but they still got a chest X-ray just in case. On Tuesday, he had been experiencing a lot of discomfort which turned out to be from the IV in his hand, which went bad and was very painful.

Early Wednesday morning, the nurse had difficulty drawing blood from the replacement IV, again causing him anguish. After Wednesday’s blood culture debacle, we discovered that the new IV in his arm had gone bad and needed to be replaced. It took another three needle sticks and a lot of restraining to get the new line in.

Needless to say, Colin is losing unclaimed real estate on his little body. With each IV and needle stick, it becomes increasingly difficult to establish and maintain venous access. Unfortunately, the PIC cannot be placed until there is a strong history of negative blood culture. Realistically, this means Monday morning is the earliest we could expect this to happen (chemo could possibly take place later in the week).

On Wednesday, the nurses are already struggling to keep IVs going, so another five days seems impossible. As his parents, it is beyond difficult to watch them repeatedly poke and restrain him (six times on Wednesday for a tiny amount of blood and a shaky IV), but we don’t understand the parameters for getting his plan adjusted. Right now, we are lobbying to increase his feeds, thus increasing the fluid intake closer to his maintenance level and providing more consistent nutrition, and switching all of his medications to the G-tube.

This would reduce the strain of the IV fluids, which are currently high in glucose and contain potassium. The nurses have also suggested spreading out the time of the infusion of the anti-fungal agent, which could be irritating to veins. The hope would be to stretch out the longevity of the IVs in order to make it to Monday and at least have a basic means to keep things ticking if we lose IVs altogether for some period of time. Medically, this last contingency is inconceivable, but parentally it is not. There are only so many times we can have him get stuck and, worse, restrained while they test the patency of the IV and secure it.

So far, we haven’t run any of these ideas by the doctors, but they need to understand that this situation is becoming critical. We didn’t anticipate having to go for a full week using peripheral IVs only.

The other news is that we have confirmed that the current infection is the same (common) strain as he had in New York, candida albicans. Although we had assumed that Colin had harbored a dormant colony, it is possible that it simply migrated from his gut or elsewhere and perhaps he has a particular susceptibility. However, it is difficult to argue that TPN did not play a role; the rich glucose solution and accompanying lipids provide a fertile environment for growth, and this easily explains why the first port culture grew back positive so quickly.

Clinically, Colin has improved steadily over the past few days from a pretty pathetic state on Saturday. He had spent most of Saturday asleep and, when awake, not particularly perky.

Although we are never happy to see Colin agitated and uncomfortable, it was a relief on Sunday to see him get the energy to resist and complain. Even the relatively painless exercise of drawing blood from the port annoyed him to no end, and the nurses were similarly delighted that he had perked up enough to fend them off.

One of the niggling issues that goes along with this port infection is the question of how to prevent a recurrence. Switching to a Hickman line doesn’t help one bit, since it is equally likely to harbor fungi in similar circumstances. Dr. DeWire now suggests that Colin may need to be on a prophylactic anti-fungal regimen while neutropenic. Some of the more common anti-fungal agents cannot be used with chemotherapy, though the one he is on now is fine and relatively gentle on the system. We also have to consider how to approach Colin’s care and the possibility of prophylaxis when he gets radiation or at least under certain conditions.

Coming as far as Colin has over the past several months, we are delighted at how interactive and aware he now is. With this comes the responsibility to integrate sensitivity to his experience and the larger burden of seeing him as a person and as a child at the same time we must regard him as a patient.

The fact of Colin’s IV challenges is a medical problem in and of itself. When one adds to it the anxiety of worrying about Colin’s reaction, it is nearly unbearable. While we recognize the need to bow to medical need, there is a similar need for the medical to bow to the human. The question is always how to balance the two and when to realize that one has trumped the other.

2 Comments »

  1. It pains me to hear how much Colin has to suffer throughout these procedures of good intentions. Is it possible for them to put some lidocaine gel on the sites or ethyl chloride (cold spray) before attempting to stick him with needles? I don’t know if it is available for children, but maybe they can look into it? I wish I could take away his pain and yours as well.

    Lots of love and hugs, Riye

    Comment by riye_aoki — October 30, 2009 @ 12:52 am

  2. Words fail me as I try to express my feelings about Colin’s physical, mental, emotional pain and your, Ian’s and Aidan’s pain. Like everyone else, I wish I could take some of it and put it on my shoulders. I can only offer love and prayers and know that you are balancing things expertly, like a tightrope walker hopping on one foot and juggling a bowlful of oranges.
    Love to all,
    Diana

    Comment by dinetzer — October 30, 2009 @ 1:29 pm

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