Eyes on the Prize

[imagebrowser id=13]Colin’s habit of throwing us for a loop has continued unabated. Although blood cultures from the 12^th did not produce anything, cultures from the 13^th did. In a nutshell, Dr. Boop will not do a surgery, especially one that is long and complicated like Colin’s, without assurance that he is not harboring an infection.

Therefore, Colin will get his third port pulled on Tuesday and receive a temporary PICC line. He will get a new port placed on the day of his neurosurgery. These new venous access milestones represent his third PICC line and his fourth port.

If we weren’t concerned about the timing of surgery, we could salvage the port through lock (also known as “dwell”) therapy (letting the port sit dormant for at least six hours with antibiotics to clear the device of infection). However, we cannot afford to delay surgery after waiting a month since he stopped chemo.

A look at the radiology report from his December 24 MRI clearly tells us that he has new tumor growth that had been alluded to as suspicious areas. I suppose that we were being told earlier that there was new growth, yet it feels very different to hear those words explicitly and explains the urgency for surgery.

Colin has been out of the hospital for a few days now and has thoroughly enjoyed his access to food. When he was inpatient, he delighted in the arrival of the food trays, a novel experience for all of us. We discovered what he didn’t like (ravioli) and what he did like (spaghetti with meat sauce) and what he simply enjoyed being given, even though he couldn’t eat it (cheeseburger).

For one thing, this has represented tremendous improvement in his quality of life, but for another, it has given him a lot of exercise with the parts of his mouth that need to work in order to eat. Since the swallow study, his eating skills have steadily gotten better and he seems able to handle larger volumes of food as well as a greater variety of textures.

We also suspect that his access to food has improved his overall digestive system and, oddly enough, caused him to gain weight, even though he’s not taking in appreciable additional calories. Because the digestive process starts at the mouth with salivation, chewing and swallowing, it is possible that his activation of the top half helps the bottom half work better.

Colin’s feeds have been at the same total rate for some time now, yet in the past week he seems to have really bulked up. Under the guidance of the nutritionist, we have put him on a diet by cutting back from five cans to four cans of the formula that we use. Putting this into context, he got a little skinny before when we kept him on four cans in the past.

It’s been great to see Colin returning to his old self. He is impossible to keep in one place because he is way too mobile and makes all kinds of cute and funny faces. We are very happy to see him wiggle around and are happy to be able to give him food when he asks.

At the same time, we really miss Aidan. It was easier when we were in the hospital and I wasn’t used to having him around as much, but at home his absence is conspicuous. It would have been nice to have the boys together while Colin is doing so well.

We do our best to remain in the moment and not focus on the urgency of surgery or the uncertainty of it. On Saturday, we are participating in a St. Jude event, CountryCares, which is a major fundraiser related to the country music scene. Today, the hospital was swarming with musicians, including Carrie Underwood, Jewel, and Lynard Skynard. There are plenty more, but frankly I am terrible at recognizing famous people and am further out of my element given the predominant genre.

Fortunately, the event is at the Peabody Hotel, so Colin will have an opportunity to see the ducks! Yippee! We look forward to reporting more during our pre-op week and giving more snapshots of Colin’s time out on the town in Memphis before he rounds the top of the hill to the next mysterious valley.