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

August 3, 2009

A Room With a Poo

Colin finally found a way to get private digs at the hospital, but the unfortunate price is the contraction of a highly contagious infection. He must remain in isolation for eight days now. On Friday morning, he woke up and developed a fever with diarrhea. His nurse quickly suspected C. Difficile, which people typically get after a longer course of antibiotics. However, this bacterium is commonly found in hospital environments, even when no patients are symptomatic.

The treatment for this is fairly straightforward, but it actually took a day to get a culture back, so in the meantime Colin had to get a full work-up to make sure that the fever wasn’t coming from an infection elsewhere. Unfortunately, Colin received his first non-anesthetized lumbar puncture (spinal tap) on Saturday. Fortunately, we found that the intracranial pressure was good (around 9-10) and for the most part, the results on the fluid came back okay but with a slightly elevated white blood cell count.

Neurosurgery didn’t even think that he had a real infection, but given the risk due to recent surgery, it wasn’t worth taking the risk, so he is being treated with antibiotics for septic meningitis.

Through all of this, Colin has had a fair amount of phlegm and often his blood oxygen levels are dropping and his heart rate is either high or low. The high heart rate is certainly consistent with fever or pain, but there are always overriding concerns about hydrocephalus or, now that he is tapering off of the steroids, endocrine issues.

It turns out that Colin is a complex little guy and he has been baffling the doctors here. Every night, they do a chest X-ray (among other things) and contemplate sending him to the ICU. Finally, on Sunday night, they decided that it was necessary to pull the trigger on it; earlier in the day, he had a CT scan that showed his ventricles slightly larger. Though he isn’t exhibiting signs of real hydrocephalus, it was important to exclude it as the cause of his respiratory symptoms.

They performed a second lumbar puncture in the ICU and drained off about 20 cc’s of fluid. The pressure was the same as it had been the previous day and, though the beginning of the procedure was uncomfortable, he somehow fell asleep during the middle.

All the while, the doctors were trying to extract an arterial blood gas and either had problems with the blood draw itself or the blood clotted in the machine. During the first attempt, we made sure that this wasn’t a “learning opportunity” for an inexperienced resident; finally, we demanded that they draw blood off the port rather than poke him for the umpteenth time.

When the blood draw from the port wasn’t working, the doctors again informed us that he would have to get a poke to get the blood. Fortunately, we have learned a thing or two in the hospital environs, so this was an opportunity to explain that our concern wasn’t parental “frustration” but our child’s actual and real pain.

Ports are most often used for oncology patients, and they generally spend most of their time on the general pediatric floor, not the ICU. Therefore, the nurses with the most experience with ports and the best understanding of how to get them work are not the ones who normally circulate in the ICU but instead those with the most oncology experience.

Thus, in the ICU, our best chance of getting the port working properly and avoiding more hassle for Colin was to demand that they go across the hall to get an oncology-savvy nurse, which the doctors had to accede to (they weren’t getting parental consent to another needle stick otherwise). This nurse tried everything and finally got the port to work without having to reaccess it, further giving us useful information on how best to access the port (aim on the high end for best blood flow).

It is interesting to note that the nurses themselves are aware of their own limitations and the fact that somebody else might know the “trick” to get the port to work. They are generally very sensitive to patient comfort and supportive of efforts to ensure his comfort.

The nurses have also been very helpful in teaching us how to manage the feeding port, as we will eventually have to handle all of that ourselves. It’s certainly much easier to practice in the hospital where there is an ample safety net.

The shunt installation is scheduled for Tuesday and will be on assuming that the C. Diff infection doesn’t take a turn for the worse. We will be discussing options for the device based on our interest in possibly having Colin participate in the Memorial Sloan Kettering trial.

In the meantime, he will start relatively soon on chemo and we will be coming up with a custom designed treatment plan. Also, the consultations with outside groups will continue as we disseminate materials from Boston to Tennessee.

Colin has been much less active and feeling yucky, partially due to the C. Diff infection and also because of factors that aren’t clear. Although his intercranial pressure seems okay, it also appeared that letting out some of the fluid perked him up. This certainly supports the idea that the shunt is necessary; the collection of fluid near the incision looks uncomfortable and got quite large today although not dangerously pressurized.

Going for his CT scan today, which is a relatively minor and non-invasive event, Colin was scared. He was also scared before the lumbar puncture, which is a bigger deal and much more invasive. While he did seem to relax with reassurance on both occasions (and he enjoyed the record speed wheelchair ride by Luigi, the neurosurgical resident), his own sense of worry is an indication that he feels something amiss.

Although the lumbar puncture is a strange procedure to partake in with risks that one does not take lightly, it was a relief to know that we were excluding ICP as a contributing factor to his symptoms and relieving those symptoms if they were there. But Colin got to sleep peacefully after it was all said and done, snuggled up with Duck.

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