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Tuesday, March 20, 2007

Sunday March 18th Update

OK. Where to begin? It feels like a decade has passed since our last update – we're literally busy every moment of the day and when we're not, which is usually not until late at night, we're so exhausted that we fall asleep before our heads hit the pillow. It's after midnight on Sunday evening and Liam is still awake. We just finished blowing bubbles; having a few bites of "daddy toast" (peanut butter on whole wheat – his daddy's favorite breakfast treat); changing a diaper without him writhing in pain (thank you white blood cells for healing my son's tender tushie); singing a dozen rounds of Twinkle, Twinkle Little Star; watching Caillou (what else would we be watching?); and rubbing Liam's feet. On Saturday Liam's white blood cells and absolute neutrophil counts were high enough to gain him a ticket out of the hospital. As we were leaving the hospital, complete with two huge shopping bags and a large box filled with medicine and medical supplies, I felt the same way I did when I was leaving the hospital with Liam after he was born. Scared, apprehensive, hopeful and thrilled to have my baby boy. And in a sense I am bringing my baby home for the first time. Everything is different now. Everything is new.

On Friday morning, our nurse woke me up to tell me that Liam had visitors. It was the iron workers who are working on an addition to the Cornell Medical Building located across the streect from Sloan Kettering. The workers came to visit Liam, but unfortunately Liam was deep in sleep and knowing that his disposition isn't exactly chipper in the morning, I decided to let him continue sleeping. They left a hard hat personalized with his name, a wrench they use day-to-day to secure the steel beams, an iron worker's t-shirt and stuffed animal. And, to top it off…on the protective black draping that's covering the construction project, they spray painted "Get Well Liam," in bright orange paint. When I showed the writing to Liam and told him what it said, he giggled. I'm not sure if he understood what I was saying, but I certainly understood the giggle.

After we were released on Saturday, we came back to the apartment that has graciously been arranged for us as temporary housing for the big reunion with Ella. When the door opened, Liam looked at Ella, Ella immediately smiled at Liam and started running towards him. She stopped just short of him and they both stood within inches looking at each other. It was as if neither knew what to say to the other – they knew something was different but they didn't care, they were just happy to be back together. Within 10 minutes, Liam was pushing Ella so everything was back to "normal." The apartment was transformed into a giant toy-strewn playroom for the rest of the afternoon. We were having a good day until we had to try and give Liam his dose of super-power antibiotic for the evening. Let's just put it this way – after more than an hour of coaxing him to drink the antibiotic which was diluted in some of his favorite drink, we weren't getting anywhere fast. And after our effort to get most of it down, it all came back up. After a consult with the hospital at 1 a.m., we decided it would be easier to give the medication to him via his "tubies" (central line) so that he wouldn't become averse to taking medication orally. Sunday morning was spent back at the hospital. I explained to Liam why we were going to the hospital, promised him it would be a quick visit, and to my surprise he seemed to understand and accept. The three-block walk to the hospital seemed to be orchestrated just for him. The minute we got off the "alligator" (Liam's name for elevators), there were three fire trucks with lights on outside the apartment building. It was the same group of firemen who came twice to visit him while he was in the hospital. Behind the fire trucks was a police care with lights flashing, another Liam favorite. On the next block was a backhoe digging up a deep hole in the street which we had to stop and watch in action for a few minutes, and in the last block before the hospital was a doggie that looked just like Madison which Liam loved seeing. At the hospital, Liam was completely enthralled with Kenny who works in the urgent care center. And, like his stay on the 9th floor, I couldn't keep Liam in his room. He insisted on staying in his stroller and being pushed ("Mommy – Keep Walking!") throughout the Center during the time he was receiving his medication. He never even sat in the bed – didn't want anything to do with it – would only tolerate being on the move. One thing that amazes me is how comfortable he has become with his double central line that is now a part of his chest. He helps flush his lines with saline and heperin, and is completely fascinated with the IV pump…to the point that he knows where the mute button is to stop the beeping that seems to sound primarily in the middle of the night. After the IV machine started beeping to indicated that medicine was finished, he declared to the entire staff that he was "all done" and started waving goodbye. On the way back to the apartment, we stopped at the fire station that has "adopted" Liam to see the fire trucks up close and in person. Liam got to sit behind the wheel of a fire truck which made him smile a huge smile. Our visit was cut short by a call to respond to an emergency which allowed Liam to see the firemen rush to put on their boots, jump onto the fire truck and drive away. He was in awe. The rest of the afternoon was spent doing laundry, riding the "alligators" up and down and eating…and boy did he eat! Liam ate more on Sunday than he has eaten the last three weeks. It was unbelievable. He ate, and ate, and ate, and ate to the point that we were worried he would not be able to keep all the food down…but luckily he did. Daddy, Liam, Ella and Mommy spent time dancing to the Wiggles, talking about rainbows and butterflies, looking out the window at all the tall buildings, and enjoying spending time together. Liam is quickly losing his hair and at the rate he's going he'll be bald by the end of the week. My next mission is to find some soft hats for him.

It's now 1:30 a.m., Liam is finally asleep, and I have some work I need to get done, but I can barely keep my eyes open.