Saturday, September 20, 2008

Interesting Week...

So, The Boy went in for his MRI on Thursday. This test was to provide more information for Dr. Doolan at the Children's Hospital of Philadelphia; supposedly, it will show him that the second tumor is benign. We haven't heard the results yet, but we expect them on Monday. Aunt M came in from Harrisburg to help out.

We arrived at the hospital at 8:20 for an 8:30 appointment at the Valerie Fund Center. This was Week 11 of his chemotherapy, which is a week that has no medication. The Boy didn't need his port accessed, just a finger stick to get some blood for counts. We hung out at the Valerie Fund Center while we waited for attention, and they told us that they wouldn't stick him at the center. Instead, they told us to take him down to the MRI and they would take the blood while he was sedated.

After a few little mishaps getting The Boy checked in, we found a nice spot to wait. Aunt M took The Boy walking down the hallway to the preparation / wakeup room. Eventually (only about 30 minutes later), they took us in to the preparation room. We walked through a major labyrinth to the MRI room, and I laid The Boy down on a stretcher. The Boy screamed at us for doing this, and the doctor put a mask over his face. Within about thirty seconds, he was asleep and we were hustled to the MRI waiting room.

He was in the machine for about a half hour or so, give or take. We waited in a tiny little cubby off the main hallway, and I read a couple of music dork magazines. The big cage / crib passed by, which we figured (correctly) meant that he was done with the MRI. He was absolutely zonked out. That makes sense, because an MRI requires the patient to be absolutely still (which a baby can't do, of course). They took us to the recovery room, where a nurse waited with us for The Boy to wake up. It took about twenty minutes, more or less. As soon as I told Aunt M that I was headed to the bathroom and took two steps, he screamed and, well, that was that.

Side note: as a teacher, we learn to train our bladders. For instance, I have classes four straight periods, from 9:46 to 12:40. That means, if I have to use the facilities at 11:00, then I'm pretty well out of luck. So, after a while, we learn to pee at certain times and to hold it for an hour or so when necessary.

But, I digress.

He was pretty well drunk when he woke up. Like, he sat up, wobbled and fell down again. It actually was pretty funny, in retrospect, but a bit scary at the time. When I picked him up, I had to hold him like a newborn - one hand on his head, arms fully around him. This was one of the times when I was really grateful that Aunt M was there, because she helped out a lot all day, particularly while we were waiting for The Boy to wake up and to recover. We took him to the recovery room; the cool thing about that was that I sat in a wheelchair and held The Boy while they took us to the step-down recovery room.

That was pretty impressive, actually; I weigh about 220 pounds after lunch, and The Boy weighs 20-something pounds. Our nurse could not have weighed more than 120 pounds in a wet wool sweater. The fact that she was able to push me was remarkable!

The step-down recovery room was a four by four niche with no furniture in it. I sat in the wheelchair until it became a hazard; The Boy was trying to sit and crawl and stand - while stoned from the sedation - with metal doohickeys sticking from the wheelchair. The nurses brought us some packages of poundcake, which The Boy ate with relish. (Not with the condiment relish; I mean that he really enjoyed the sugared treat.)

I wasn't too thrilled with the "step-down" recovery room.

The interesting part was when they came to take the IV tube out of The Boy's hand. He was eating his poundcake at the time. He watched them take his hand, take the tape off, pull out the IV needle and put gauze on the wound. He didn't make a peep, just watched the nurse work and munched on the poundcake. What a kid. I would have been crying like a little girl.

We brought him home at that point, and he fell asleep quickly. He slept a lot of the remainder of the day and quite a bit on Friday and today. The sedation with do that to you, particularly to a kid who has hemoglobin levels as low as The Boy's levels. He's been relatively easy to care for, except for a vomiting spell today just as The Wife arrived in Piscataway to watch my band march.

I'm hoping to take The Boy to see 'Round Midnight at a performance at my church tomorrow afternoon. The Wife is teaching at that point, so she won't be joining us. This week is a big chemo week on Thursday, with The Boy getting the doxorubicin - one of the Big Bad medications. But, this week was hard - Friday night football game, competition today, concert tomorrow means no rest at all. This week will be a bit easier: easy rehearsal Tuesday afternoon, Dapper Dans Tuesday night, no marching band for me on Thursday. I have a lesson to teach Monday, with some nice kids. I'm nervous about teaching it, because I'm tired and grumpy, but it's a neat family.


the mol said...

Correction: The Boy is getting Actinomycin-D. Doxorubicin was Week 9.

And as for the little nurse being able to push you, there's this cool invention that helps with things like that. It's called a wheel. Two of them help to move the wheel chair.

Love you, sweetheart!

Musical Daddy said...

yeah, bit still. That is an awful lot of weight. Good for her, you know?