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

August 25, 2009

Breathing Easy

Colin is in the ICU recovering from the installation of a trach tube. He also has a new MRI done this morning and we will discuss the results of that when Dr. Gajjar is back in town next week.

After the trach hole has healed, Colin is slated to start chemo. The first drug is methotrexate, which is infused over a 24-hour period and is closely monitored. Although it’s not especially harsh on the immune system, it is extremely toxic to various organs. He’ll receive a drug to counteract the methotrexate several days after.

Another glitch that has appeared is a positive blood culture for a gram negative bacillus. We aren’t sure yet exactly what specific organism is involved and what implications it will have for Colin. There is a possibility that the new port will have to come out, but it is also possible to treat such infections without removing the port (unlike fungal blood infections).

On a brighter note, Colin got the all-clear from C. Diff! On Monday, he got to take a stroll outside and gave a big smile when he finally felt the sun and wind. We looked at big trucks on the highway and just walked around for as long as he was allowed to be in his new wheelchair. A volunteer gave us a helping hand by carrying a portable suction device that he never actually needed.

Monday was an absolute whirlwind of activity. PT came by twice, the first time for a basic assessment and then again with a wheelchair and a supportive seat that he can use to sit up here and then when he becomes an outpatient. The wheelchair has an adjustable tilt mechanism and is brand new (for his use only). Child life dropped off some CDs, a CD player, movies, and a kind of kiddie mood light that makes funky patterns on the wall. Oddly, there is no music therapist here.

The ENT resident came by to look at Colin, discuss the installation of the trach, and then later returned to scope his throat. This confirmed that the left vocal cord works well but the right one is still paralyzed. We gleaned more information from the attending physician who performed the procedure.

He explained that, in cases where a single vocal cord does not work, the patient regains function. In fact, the doctor himself has a paralyzed vocal cord. What is important is that the sensation in the cord works and then the patient can cough and clear secretions. Colin generally seems to do this but not 100%, and chemo will weaken him, increasing the risk of aspiration. The hope is that the trach can come out when he is through with treatment.

A specially trained nurse gave us pointers on proper management of Colin’s skin, since he’s at greater risk for breakdown. She also trained us on the maintenance of the G-tube (not the pump; that is a separate person) and will return to teach us about the trach.

Our St. Jude binder is getting thick with additional information packets, including a section on the ICU that describes various procedures and monitors. There are pictures that use a dummy model, which ends up being stranger and creepier than pictures of a real person. The halls are lined with cheery photos of patients, so perhaps there is a strong institutional disinclination against depicting patients in a compromised state, even if they (or their parents) are willing to sign off on having their pictures used to show a child hooked up to a ventilator.

Our own child hooked up to a ventilator really doesn’t look so bad. In fact, Colin looks pretty cute because his face is unobstructed by a mask. The artificial ventilation is required because Colin is paralyzed to prevent movement that might twist the trach and cause bleeding. It also serves the purpose of expanding the far reaches of his lungs that have been damaged by minute aspirations. The period of continued sedation and paralysis should only extend until 24 hours after the surgery.

Colin does not know much about the trach, although we did tell him about it vaguely. Fortunately, Aidan has already seen children with trachs from his stint at Ronald McDonald House. This is all something we can get help on from Child Life. They even have a small wooden model of an MRI that children can play with and perform scans of teddy bears and so forth.

Life with cancer is normal here. Older children can feel so alienated by their illness, but the diagnosis, treatment, prognosis, follow-up and all of the various stages are part of the normal fabric of life here. Moms befriend each other and support each other, especially at times of uncertainty, such as unscheduled visits to the ICU. Unlikely friendships grow.

There is an Amish family here in homemade clothing, the women in plain blue dresses of the same fabric and design. Although this makes them stand out, there is a known commonality to the experience here at St. Jude that connects them to the other families. That said, they treat rare genetic diseases (perhaps this brings the Amish family here, since many Amish have certain genetic disorders, such as maple syrup urine disease) here as well as cancer. This is less prevalent in the overall culture, as the facility is a finely tuned machine for providing cancer care to children.

For that we are thankful, even as the frightening reality of chemo approaches. Colin will soon enough lose his Decadron-thickened hair and his caveman forehead – at least, we hope he loses that when the rest of his hair goes!

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