Thursday, May 21, 2009

It's All Relative - Kari's latest note

I'm sitting in a darkened hospital room, waiting for my boy to fall asleep. His grandma just came and went, with his aunt and uncle. His daddy enjoyed a late night visit. He has a heart rate monitor taped to his toe that we've convinced him is his cool flashlight. He puts out his little foot to get it attached at bedtime. Aside from some oral medication for a little ulcer in his tummy, William is med-free. They have him hooked up to an oxygen pump at night just to get some warm, damp air into his trache while he sleeps. He doesn't need the oxygen itself.

On the walls is decorated art from churches in the area, created by children who don't know William, but who I'm told are now using him as an object lesson for their friends: "Don't run in the hall, there was this little boy at church who ran. . ." One card reads, "I love Jesus, do you?" Another encourages William to get well soon. DeVry sent him a boquet of cookie bears frosted as doctors, surgeons, and nurses. We shared one for breakfast this morning. He has a bear with his name on it from the internet protection service I work for from home, a bunny from LeBonheur, and another little bear from an old friend of John's. There are cards from our Sunday School class, and a tie-dyed coffee filter William decorated in the 7th floor art class this afternoon. A Thomas the Tank Engine blanket from John's cousin hangs at the end of the bed.

Most of the gifts are stuck to the walls with surgical tape. They surround the locked hazardous waste bin, and the framed art of a seal balancing an oversized pig on his nose. There is a cabinet full of crackers and cookies, and a drawer full of snacks and chips. A shelf in the clothes closet contains about ten different kinds of drinks. The generosity and concern from our friends and even people we don't know has been overwhelming. I have a little stack of business cards for LeBonheur staff from throughout the hospital. Some of our floor nurses had already met us before we came to them, because friends of friends heard about William and sent them to the ICU to check up on us.

If I had wanted to feel sorry for myself at any time during this past week, I haven't had a moment to spare for it. It means so much to me to see William's face light up when people come to visit, which happens several times a day, plus nurses and staff. If you have seen the pictures of him this week, you know already that he is getting his old self back.

On Sunday, they moved us out of ICU. The nurses packed equipment around William in his bed, and pushed him through the hospital to his new room. I followed behind. One nurse headed back down to pick up a monitor she needed, planning to grab my bags for me so I wouldn't have to go back down. She came back up with a laugh, and told me I would have to get a wagon for all my stuff! After William was settled in, I headed back down with a cart and loaded up. There were several bags lined up along the side of our curtained partition, containing snacks and drinks from different visitors. Other bags held gifts for William. I put them on the cart and rolled it toward the double doors. I was compelled to look back one last time. A woman in the pod next to ours rocked her asthmatic son and congratulated us on getting "moved up". Another couple stood over their little one's bed, their attention completely focused on the child. In one of the glassed-in rooms along the side, a boy lay shivering in his bed, unable to get warm. He had almost died several times during our stay, his illness according to his mother being due to a degenerative disease. This wasn't his first visit. I prayed there for a moment, and closed the doors behind me.

In the ICU waiting room, I unloaded the locker I'd been given late Wednesday night. It contained more donated snacks, a change of clothes for me, my purse. When I was ready, I found myself turning back again, my eyes scanning the room for a face I'd come to know. I found her, sitting in one of the many chairs she'd used in the past few days, staring blankly at the wall. She sat alone on Sunday; sometimes her daughter was with her, or the chaplain. While our sons were in the ICU, I had offered to share my snacks with her, since we moms had to stick together. If she ever took me up on it, I never saw. I put my hand on her shoulder and told her that I would remember her in prayer, and her boy. She'd been there for over a week already. The Friday before, she'd told me, her boy had passed away for an hour before they brought him back. Her eyes seemed both hopeful and resigned. She smiled sweetly at me, and there was no bitterness. One baby was getting moved up to a room; that was something to be happy about.

On Monday, William seemed much improved. The nurses kept saying that from shift beginning to shift end, he seemed like a totally different boy. By Monday night, he was starting to resemble the little boy in the photos taped to his bed. Dr. MacDonald came by and told the nurses to unhook him from the IV and all those tubes and monitors and let him out of his bed. It was too bad John wasn't there to see it; I thought I saw a glimpse of our favorite fake doctor, House, in how he commanded and everyone jumped to make the changes.

A dog named Abby came to visit William and left her card. He was so surprised, every cell in his body was shaking, and he buried his face in my neck. I decided that the doctor was right, it was time for him to get less attached to that bed. Just like he was accepting that his voice didn't work, I think he was starting to see the bed as a security blanket. I wanted to see if getting out of the bed for a few minutes might develop some independence. I am not sure how thoroughly I thought that through on behalf of my very adaptable two-year-old. I set him down on the floor, and he wobbled on his legs as though he hadn't used them in days. Which of course he hadn't. Within minutes, he was up on his toes the way he usually walks, skipping across the room. I requested that he please walk. Please. Walk. Son.

I started to hit a wall. The adrenaline of the previous days was starting to wear off with the relief of seeing William get back to his old self. People would ask me a question, and I would have to stop them, process the question in my head, then search somewhere in my memory for an answer. I needed to sleep.

Tuesday, William was even better. Dr. Lyman, the gentle doctor who initially explained William's injury to us, then later described all that happened in surgery, came in and looked at his trach, then said something about switching it out the next day. I wasn't sure what day it was anymore--hadn't they told me he couldn't get the new one until Thursday? I wanted to stick around, but I needed sleep more. My friend Julie and her dad Benny came up to the hospital to sit with William while I went home and slept in my own bed.

I slept for eight and a half hours straight Tuesday night, and woke up thinking I could have had eight and a half more. By the time I'd had my breakfast and some orange juice, though, I was feeling much refreshed. John took me back to the hospital. Dr. Lyman had been by and ordered what he needed to switch out the trach. I was doing well on suctioning William by myself, and applying powder to heal the irritation on his neck caused by the damp air from the oxygen. The doctor came back around 3 PM, and got to work. We lay William down, and gave him a balloon to look at while his stitches were removed from the trach. He fought and wiggled. My mother-in-law saw his tears and felt for him like I did the first time I saw him cry without a sound. She felt lightheaded and sat down quickly. The child life specialist and I talked to William, and explained what was happening. The doctor worked quickly. The one part I couldn't watch was when the doctor removed the old trach and put in a new one. I know I have to be able to do that myself within the next couple of days, but it's the hardest thing for me to think about right now. I'm told I'll be an old pro at it before I leave. I'll take their word for it.

So, tomorrow we begin training on trach care. Once that's completed, we'll be home by ourselves with our boy and our truckload of equipment. As much as I would love for them to keep him here until it's all over, I'm even more eager to get home and pull my little family back together for one long group hug. We miss each other.

Tonight, I talked to William about talking through his trach. We have been practicing some sign language since Monday, but I'm told that he can learn to verbalize through the new trach, although it will not be easy to teach him at his age. I showed him on my own throat how he could put his finger over the hole and talk. William gingerly put his finger there, then refused to try it again. We practiced taking a breath then blowing. Then I suggested he take a breath and yell the next time. His response was a silent, stubborn smile. Later, I was talking to my mom who had just arrived from Minnesota. William was not getting my attention. Suddenly, he stood at my legs and looked up at me, then yelled. Yes, he yelled. And did it a second time. He didn't even cover the trach; he just yelled. I got nearly as excited about his first noise as I did a few weeks ago over his first successful potty, and we did a little dance. He was delighted at my response and tried the noise again, later. Tomorrow, we'll tell the doctor about it. Maybe he'll let us attach a filter to his trach, which I'm told will make talking even easier for William.

Isn't God amazing? One week ago tonight, I was settling myself into a chair in the ICU surrounded by beeping monitors, watching my boy in a medically induced heavy sleep, and not even daring to think what the next day might bring. Tonight, I am trying to invent ways to keep that same boy occupied tomorrow so he doesn't drive the entire hospital crazy with his energy! To God be the glory, great things He has done.
Day 3 in the ICU. Stephen and Anna Kathryn got to come visit. A very good visit.

1 comment:

Choate Family said...

Thanks again for sharing Kari's heart. I'm so thankful she's journaling all of this so she can treasure it it her heart for years to come. How can we contact her?