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Monday, April 2, 2007

Friday March 30th Update

We're back in. Late Friday afternoon, Liam's temperature began increasing and by 4:30 we were on our way to the Urgent Care Center. The Urgent Care Center at Memorial (what most of the people here call the hospital – not Sloan-Kettering) is a different kind of ER than you're used to seeing on TV. It's exclusively for Memorial patients which means it's only for cancer patients. From the minutes Liam and I arrived, he was not happy. He was crying because he had to leave his new home and go back to the hospital for a second time in one day. He was crying because once we did arrive he couldn't immediately go to the playroom. He was crying because he recognized that the Urgent Care Center was not part of his new familiar world. The only semi-bright spot was seeing Kenny, who checked Liam in the first time he visited the Urgent Care Center.

We were taken to an isolation room – they're the rooms with doors – not the main area with curtains between bays – and told it was because adult patients get upset when they have to hear children. His vitals were taken, he was evaluated by a nurse, and then we began the first of three long waiting periods during the evening. Liam was not happy and wanted me to hold him as he curled up in a fetal position on my lap and have me swing Twinkle Twinkle Little Star to him. The pediatric fellow on call, the one from Malawi we became familiar with during our first stay, came in to examine Liam. Because Liam had been crying, his nose was running. We went through the ritual of questions (has he been around anyone sick, how has he been feeling, etc., etc.) and then…because his nose was running…he decided to swab his nose to culture the snot. Here's where I screwed up. I should have told the doctor to please wait a while before making a determination about whether or not to swab Liam until he was calmed down. I should have insisted that he wait. But I'm still new at this and I didn't. Swabbing means a ticket to isolation for a minimum of five days, a sentence I knew wouldn't go over well with Liam. But I figured I could deal with that later…my immediate concern was calming Liam down and getting us a room. After a several hour wait, I think it was close to four hours, we finally were told a room was available for us on M9, the pediatric ward. Up we went in the alligator.

Liam had a difficult first night. He was not happy to be back in the world of seemingly constant poking and prodding. He was not happy to have an IV pole back in his life (he kept asking me to take it away), and he was not happy to be away from Daddy and Ella. But most importantly, he was not happy that anyone entering his room had to wear gloves, a mask, and a special gown that is thrown away as soon as they live the room. To Liam, a mask represents a dressing change…the activity he fears the most. So to see every person walking into his room wearing a mask was like him facing his nightmare over and over and over again. It was horrible. Someone would enter with a mask and he would immediately start saying, "The stickies are all gone! The Stickies are all gone!" It was his way of saying he didn't need a dressing change. I kept trying to convince him that no one was coming in to change his dressing, but he didn't believe me. As I sang him to sleep, I figured I could get the team of doctors who would be around in the morning to see that he certainly didn't have a cold and therefore didn't need to be in isolation. I tried to make the bleak room as happy as possible by putting out his treasured books, toys and other favorite things around the room as he slept.

Saturday morning Liam woke wanting to go home. When I told him we needed to stay in the hospital for a little while, he then wanted to go to the playroom. I told him the playroom was closed because it was being cleaned. Then he asked to go for a wagon ride. I told him I could bring the wagon into the room, but we couldn't leave the room. He said he didn't want to sit in the wagon, turned his back towards me, and stared at his music box with the birdies that move in a circle that was in his bed. He didn't want to eat, didn't want to drink, didn't want to watch Caillou, and tossed all his beloved puppies out of his bed. Alarm bells were going off in my head. I knew he didn't have a cold. I knew he didn't need to be in isolation. I knew I needed to get him out.

One of the reasons I truly believe Liam has responded as well as he has is because we've worked very hard to keep him active, stimulated, and engaged. It's an exhausting process keeping a 2 ½-year old engaged for 14 hours, the approximate amount of time he's awake during the typical hospital day, but it's our job. We make everything a discovery – from the way the food is delivered and collected, to watching the nurses gather supplies, watching the clerks wheel the blood pressure machine down the hall, watching people change light bulbs, identifying doctors and residents by the coats they wear, observing any "out of the ordinary" activities like adding new phone lines, and generally being a part of his new neighborhood.

As the team of doctors entered the room to evaluate Liam, I discussed with them my concerns about keeping Liam isolated. They politely listened but said that a policy is a policy. The attending physician, the equivalent of the president, seemed like he was slightly annoyed with me by abruptly ripping off his gown before he left the room as if he couldn't wait to get away from us.

As Liam continued to be despondent, I started my campaign to get him out. I talked with his nurse. I requested an early read on the culture. I requested that someone from infectious diseases come to evaluate the risk Liam posed to other patients. I requested reverse isolation – Liam could leave the room but only if he was gowned, gloved and masked. I asked for someone to explain the policy to me since I seemed to be hearing different versions and precedent had been set for an earlier release from isolation when we had the flu scare two weeks earlier. When I wasn't getting anywhere, I requested a doctor come in to discuss my concerns. A resident came in. We had a discussion that went no where fast and left me feeling like I had wasted my energy. Finally, I left the room and went to the area where the nurses and doctors sit to plead Liam's case one more time. I saw Heather, one of the fellows we worked with during Liam's initial stay, sitting across the room. I called her name and asked if she had a few minutes. She came out, I explained again my concerns about Liam's mental health if he was kept prisoner in his room, asked her to re-evaluate him, told he felt really unfair considering the circumstances under which it was determined he needed to be swabbed, and hoped she would listen to me. She told me she would investigate and get back to me. After about 30 minutes, she knocked on Liam's door, asked me to meet her in the hall, and told me that Liam was being released from isolation. Apparently it's the discretion of the attending physician, something she didn't know nor did anyone else on the floor, as to whether or not a child needs to stay in isolation. In Liam's case, he seemed symptom free and wasn't running a fever any more, so the determination was being made to release the socialization ban. I thanked her, turned around, opened the door, asked Liam if he wanted to go for a wagon ride, he smiled, said yes, and off we went.

We spent the weekend back in our routine with our "class." Jessie is back in patient. Liam spent time sitting with her in her bed coloring, walking the ward hand-in-hand with her as I trailed along pushing the IV pole, asking Joe's dad to show his tattoos over and over again, smiling and waving to the baby he fell in love with during our first visit, chasing after Rosemary his favorite nurse assistant, asking for cowboy (his other favorite nurse assistant) and trying to convince Lindsey that he needed to have his own IV pump to take apart and clean. (He didn't win that one.) A few times during the weekend he got angry and slightly belligerent, but generally he had an OK weekend even though he's back in the place he doesn't want to be.

One other thing we did a lot of this weekend was changing mommy's dressing. In an effort to make dressing changes less traumatic for him, I decided to get my own tubies and dressing. Lindsey rigged up two tubes for me that look exactly like Liam's, we attached them to my chest with tape, then added gauze pads over, and then put the same bandages on top that Liam wears. Liam was fascinated with mommy's dressing. When I told him it was dirty and needed to be changed, he couldn't wait to change my dressing. What amazed us is that the very first thing that's in the dressing change kit is a mask. We thought for sure he was going to toss it aside, knowing how much he hates them. Guess what he did when he saw the mask? Immediately put it on and then proceeded to change mommy's dressing. And wouldn't you know it…he did it in exactly the right sequence…from applying the solution that loosens the adhesives, to cleaning, reapplying gauze, and new bandages.

As of 3 a.m., his counts are up but not good enough yet to earn him a ticket out of here.

On another note, Liam is having a bone marrow test this week to see if the cancer is still in his bones. If you are reading Liam's blog and are a praying person/person who believes in the power of positive energy...we'll take a fresh round of prayers and good energy this week. Pray that the cancer is responding to the two heavy duty doses of chemo we've thrown at him. Pray that his little body can fight this horrible invader. Pray that he'll win this battle. I believe he will. But when our oncologist said to me this morning that he was really scared for Liam when he first met him, it gives you a sobering dose of reality. You don't want to hear an oncologist tell you they were scared. I want to hear that he's treated lots of cases worse than my son's and those patients are going great. I want to hear that this is a slam dunk - we can win this battle. I want to hear that my son will live. But unfortunately no one will tell me any of those things. All I can do is believe. Believe in my heart of hearts that we WILL WIN.