Tuesday, October 28, 2008

Nerves, nerves, nerves...

Had some potential good news this week - more on it in a few weeks, as the situation develops and grows some legs. It's nice to have positive things in life start to happen as the rest of life seems to be flushing itself down the crapper.

Ah... I shouldn't say that. One of my colleagues at work, when he heard the news about the relapse, asked me what the disposition of the baby was during all of this stress. Watching him, I am continually amazed. He is a normal, happy, healthy, playing, fun-loving little baby boy! He loves his stackable cups, taking one in each hand and smacking them on the ground while he crawls around the house. He loves his food, makes decisions about what he wants and what he doesn't want, and definitely chooses which parent he wants to spend time with. The good news here is that he's decided that Daddy is okay to snuggle with at night, so I can help my wife a little bit. Before, he'd only respond to her at night. Now, he will occasionally flop over onto my belly / chest / leg / whatever.

Last night, he flopped onto my belly, then rolled onto his back, with his cheek up against mine. He smiled at me, then grabbed my glasses and waved them in the air before I had time to react. Little imp, indeed.

The surgery is on Thursday. CHOP screwed up again and called us today to let us know that we had to have a cardiology workup for the anaesthesia people. That makes perfect sense, of course; but, when we're told at 4PM on Tuesday for a Thursday surgery that without the workup the surgery won't happen, we tend to panic a bit. My wife went through the roof, and rightfully so. I found out what was happening and what information we needed. My wife made an appointment at the Valerie Fund Center for tomorrow, and I made the arrangements for the babysitter to drop the baby off at the hospital for my father for a 2:30 appointment.

The Boy was going in tomorrow anyway, because Dr. Narang wants one more round of blood counts before the surgery. If his hemoglobin and ANC (absolute nutraphil count) haven't gone up, they want to give him a shot of nupagen, which is the stuff that supercharges his bone marrow into producing more cells. Considering they're going to perform surgery on him on Thursday (read: "gut him like a fish"), it's a good thing to make sure that he has the hemoglobin and white cells to git 'er done.

The Wife went to Trader Joe's tonight to pack a snack bag for us. Considering that we'll be in the hospital for an unspecified length of time (could be three days, could be a week, could be more), it's nice to have a wider variety of snacks for us besides the hospital-provided jello, pudding and 4 oz containers of fruit juice. (That's what Barnabas has. Who knows what CHOP has - considering the way they've treated us, it wouldn't surprise me if they had airline pretzels or less.) She picked up some fruit strips (like Fruit Roll-ups, but made with actual fruit), granola / cereal bars, Pringles, that sort of thing.

That goes in the car on Thursday morning, along with the BIG suitcase of clothes, the computer bag, with little iPod television thing my father gave me, some DVDs, my magazines for the last month (Muscle & Fitness, last week's Sporting News and ESPN, Rolling Stone, Parenting, Instrumentalist, etc.), a couple of novels, five or six television shows on the iPod Touch (which has wifi capabilities), a couple of movies on the other iPod (most notably the 1966 Adam West "Batman" movie, which TiVo picked up for me), some headphones, toiletries and any other random things that we can fit inside.

The plan is for us to go down on Thursday morning. Either Saturday night or Sunday morning, I'll come home and do my two church gigs on Sunday and go to school on Monday, then return to Philly. The Wife will go to school on Tuesday, and then we'll figure out what happens after that. With luck, we'll be able to transfer him to Barnabas by then, if we can't bring him home.

Either way, I'm going to bed now. I've been moving since 7AM, and it's now 11PM. I'm tired. I don't do 16 hours like I used to do.


Paul D. Keiser said...

Seems analogous to the situation: "Some days you just can't get rid of a bomb!"

Sarah R said...

Good luck, you guys! I'll be thinking of you tomorrow and will keep the positive thoughts flowing.

Andrew totally loves his stackable cups also and does the same thing as The Boy: he crawls around and you hear the hard slap of plastic on wood floors and then the soft hand and so on. It is so funny. Are they the ones that go (from biggest to smallest): red, white, blue, green, black, yellow, red? That'd be funny if they were the same thing. :)

Sarah R said...

Also, Andrew hates when I stack the cups together. He will immediately dump them out, making a point to throw them to the side. He also hates when the wooden puzzles are put together. Oh, and the Fisher Price Rock-a-Stack must be immediately disassembled. He actually gets MAD at me when I try to stack that!

the mol said...

The good news on that front is that since I have been to CHoP, I know that they have a similar selection of snacks at the hospital if not better. Juices (including grape!) and pudding, crackers and cookies. And ginger ale.