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

October 15, 2009

Putting the “P” in PT

Colin’s trip back to the hospital has been longer than we had hoped, though not for dramatic reasons. First off, his ANC has not yet bounced back. His ANC was zero on Sunday and Monday, then 100 on Tuesday and Wednesday, not enough of a gain to buy him a ticket out of here. Also, he is clinically not improving adequately.

On Monday, Colin seemed uncomfortable and his breathing was labored, so Dr. DeWire ordered a “sprinkle” of Lasix to reduce suspected fluid overload. Between the rapid influx of blood products and his relative inactivity (and, therefore, lower tendency to lose fluids through sweat), it is reasonable to expect that he could get a bit imbalanced.

Although he peed like a racehorse, this didn’t fix the problem. His lungs were showing evidence of atelectasis, the collection of fluid and secretions in the lungs due to inactivity, in turn making him oxygen dependent.

This all constitutes a disconcerting trend, though subtle. On Tuesday night, we needed to increase his oxygen and he seemed especially uncomfortable.

On Wednesday morning, Colin’s problems worsened with a distended, sensitive belly. Touching it sent Colin into fits. Fueled by concerns of problems with his G-J tube or, possibly, the shunt, the resident ordered a bedside X-ray. The radiologist found “distal migration” of the jejeunal portion of the tube, which is actually expected because part of the tube is looped and allowed to stretch out over time.

However, to be on the safe side, they ordered additional X-rays to examine the shunt area and an ultrasound to check his abdomen. The rush to perform imaging is not unfamiliar to us, but it’s not something we’ve dealt with in a while.

Before the second battery of tests could take place, Lauren the physical therapist came by to put Colin through his paces. As she picked him up to move him next to the couch for standing practice, he annointed her with an odiferous surprise!

For whatever reason, the entire load of his diaper seemed to shoot out the top and right onto her sweater. There was also a good smear on her pants. We urged her to go to the OR and get a pair of scrubs. Evidently, they are not supposed to dispense them directly but decided against forcing her to tromp through the hospital covered in feces (good call!).

Lauren returned soon after we had changed over the bed and cleaned Colin up, then resumed her PT session. What a trooper. This was her first experience getting pooped on by a patient, and she handled it gracefully, noting that it will make a great lunch story. Not only that, but she continued working with Colin, who was now ready for it.

We noted that his mood improved immediately, and his belly was no longer distended and sensitive. When he resumed PT, he started doing things he hadn’t done before, namely putting weight on his weaker right leg rather than his left. We hope that this gave Lauren extra satisfaction in her work and reinforces her dedication to taking one for the team.

For Colin’s part, he seemed thankful for the poop therapy.

The fellow who had ordered the imaging earlier in the day (he is called, due to his youthful appearance and vague resemblance to the actor Neil Patrick Harris, Doogie Howser) left the room virtually clicking his heels. “You can push his stomach to his spine and he doesn’t mind!” he exclaimed. Maybe this is a good description for another medical professional, but it sounds horrifying to a lay person. Why on earth would you want to push his stomach to his spine?

Colin’s newfound relief also improved his breathing, though not quite enough to get him off of the oxygen. As he feels better, we expect his lungs to improve and will get closer to bringing him home.

On Tuesday, Aidan’s circus camp performed for his school. The performance was charming and the kids all wore costumes, though Aidan somehow got saddled with the geeky clown outfit (why not an animal, at least?). In forums like this, it is evident that girls simply have greater focus and coordination than their male counterparts. Their cartwheels are more complete and they are even able to correct the ringmistress regarding missed routines.

Although Aidan enjoyed some aspects of the performance, he was also distractable and eager to go home. It turns out that some of the difficulty was related to the scheduling, as the performance conflicted with customary snack time. Anybody accustomed to managing small children knows how deadly a grumbly stomach can be to concentration and mood.

All in all, Aidan has been extremely understanding about the situation, but being uprooted from his environment and having his brother’s medical situation so tenuous (moreso to him than us) have taken its toll. He misses his friends and his home routines, but will at least get a good dose of his buddy Kiyoshi, who is coming to visit this weekend.

We are very excited about the visit for both the boys, especially since we expect/hope Colin will be out of the hospital by then. Colin knows Kiyoshi well and saw him just before leaving New York.

Just as last weekend, we look forward to the opportunity for Colin to come home and enjoy a more normal life. We constantly remind him that he will be able to walk and run again, reminding him that he first has to practice by standing.

Colin is acutely aware of his situation now. He understands about the G-tube and even pointed to the feed bag the other day to indicate that he was hungry. His disability is obvious to him, so we emphasize that is it temporary and something he is able to overcome.

Even though Colin is unable to speak, he gets a lot across. When he isn’t wiped out by chemo, he wants to be up and about and he wants to play, especially in the presence of other children. We are encouraged by his awareness and inspired by his motivation. If anybody ever wonders why people work in this profession, it is because children make amazing patients.

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