Tuesday, June 30, 2009

Time for Miracles by Kari

The past four weeks or so have been waiting, waiting, waiting for Monday, June 29th. Yesterday. THE day when the trach just might come out! But maybe not. Hopefully. Let's set the date and we'll see. No promises. But the prospects look good.

It's been a little like playing with a Magic 8 Ball. No. Yes. Reply hazy; try again.

We had a pre-op appointment the previous Wednesday. The surgeon repeated what he'd said before with some additional encouragement: William was talking around the trach and even breathing around it when the hole was covered up, so he didn't think he would have to replace the trach with a smaller one for a while. He would either pull it out, or leave it in if there was scar tissue. But he fully expected to pull it out.

The problem with the injury was that it was at the smallest part of the trachea. If scar tissue was built up there, it would leave an even smaller hole. They would have to leave the trach in, and over several months hack away at the scar tissue with lasers, so as not to irritate the site and create even more scar tissue. So yeah. Reply hazy. I was very apprehensive about Monday. I thought it would mean the difference between a great summer and a very intense one.

Our check-in time was set for 6:45 AM. We weren't given a surgery time, but were simply told that the surgeries are scheduled by age, youngest to oldest. When we arrived, we were put in a holding room with a bed and television. There was no bathroom or couch--this wasn't an overnight room. They filled out paperwork, and asked us the same questions we'd already been asked over the phone, at the surgeon's office, and would continue to be asked several times that day. I wondered if all these people might compare notes and if I was remembering everything the same way every time. I would probably crumble in an interrogation. Obviously, I was bored. And anxious. And starving.

I went down for some breakfast around 8 AM, since they told us the surgery would be at 9, and we wouldn't likely be called in until just before then. Ten minutes later, John called me and said they were ready to take him in. I dashed upstairs in time to meet them at the door to the Bunny Room. Thirty years ago, John stood at the door of the Bunny Room at this very hospital, getting ready for a surgery. He remembers the tiny room being much larger. From floor to ceiling of the space, toys for varying ages were stacked in abundance. We saw a little fireman's set complete with hat and fire extinguisher and showed it to William. He scanned the room in a matter of seconds, and made his way to a plastic yellow Saxophone sitting on the floor in its box. "This one!" he exclaimed. Not to be dissuaded, we let him pick up the toy, and we headed for the surgery waiting room. William stopped us, and reached for the other sax. "This-one-Stephen's!" he informed us, shoving out the words one breath at a time. We had to tell him no, but realized that Stephen might be getting a matching "happy" by the time William gets home from the hospital. They're getting to that age where it's prudent to have two of the same exciting toy.

While we waited to be called, William tried out the sax. The respiratory therapists introduced themselves, and the surgeons greeted us. We knew that once the room was prepared, things would happen suddenly. One of the technicians finally came for William. The first thing would be to give him the gas to put him under--we chose grape flavored gas. When John was six, he chose vanilla. They told him it wasn't very yummy--we asked, and they still offer that flavor, but nobody picks it. The woman carried William away quickly, and he cried for us, clutching his saxophone.

We were told that the surgery would probably last anywhere from ten to fifteen minutes They would be going down William's throat with a scope to view the injury, and to check out the trach site for any scar tissue or irritations. We were to wait in the temporary room we'd been given until he was moved to the Recovery unit. There, they would remove the trach after William was awake and monitor him. We would be called within about thirty minutes. By 9:30 with no word from anyone, my nerves were on high alert. At a quarter to ten, the female doctor, who was so kind to us on the night of William's injury, called to fill us in. She said that everything was fine, but that they had found a growth around the trach site and that the surgeons wanted to follow William into Recovery so they could clean it up and observe him awake. She would come get us when they were done. I took a deep breath, settled back on the hospital bed to watch the CBS news report on Michael Jackson, and worried over what "growth" meant in doctor speak. My father-in-law brought my sister Ruth, and John went down to get her. While he was gone, the doctor came for us. I grabbed the bags, and called John, telling him to meet us there.

William was awake and wrapped in a sheet, leaning weakly against the rails of his bed. He was crying. They told me he cried before surgery and after he woke up--not a happy camper. I couldn't blame him. There was a small square of gauze on his neck, held there by surgical tape. The trach was gone. I took another deep breath.

The surgeons explained to us that the growth they removed was tissue surrounding the trach. The plastic of the trach itself irritated the skin both outside and inside, but it was fresh enough that they really just had to pull on it a bit to get it out. He was fine. I squinted my eyes and asked the big question: "How did the injury site look?" Dr. MacDonald smiled. It looked great. Everything had healed up nicely, with no excess scar tissue evident. And to sweeten the news, any mild laceration to the surrounding tissues had healed up on its own.

William was a wreck. He wanted to sit in my lap, and within an hour he fell asleep there. His cheeks were mottled with red splotches, and the skin around his lips was white. The nurse told me it was a side effect of one of his anesthetics, and would wear off. We waited for a room. The floor we were to be moved to was full, and there were four children in Recovery waiting. Another child showed up. Their doctors finally all signed off for them to be moved to other floors, but we still had to wait to be assigned. By two-thirty, I was exhausted. William was rested, and had had lunch in Recovery, but I was tired from holding him, and couldn't leave to get lunch. Or I wouldn't leave--I was told that I could bring food in, but I didn't want to leave William and come back to his tears again. Ruth wandered around the hospital and came back with snacks. The nurse informed us that we'd been assigned, and we helped her push William's bed to his room. We turned on the television for him, and he watched it while Ruth and I wrapped ourselves in blankets and fell asleep curled up together on the couch.

Ruth left around 3:30 to go home and help Bill and Charlotte feed supper to the other kids. When she left, Dr. Lyman came in. I asked him what our time frame for healing was. He said that it would heal as best it could pretty quickly. But that in a year, I would have the option of having a surgeon clean up the rough skin around the trach site to leave a smoother scar. I had already been told this, and had decided we would do that. Then he told me something that rocked my world. Again. William's trach site would heal quickly, but it would likely not heal over completely. He said that they "train" the skin around the trach to act as a collar, and that it becomes such a strong seal that it won't bond completely without surgery. It would likely be left with a small slit. We could keep it covered, but it wasn't necessary, and not even recommended. Unless we're in a sand storm, or something. He said that it would have to be closed surgically later. A month later? No, he replied. They would close it up when they repair the scarring--in a year.

I sat back and looked at Dr. Lyman, speechless. This was information I wasn't given until just then--not by anyone. He would have a hole for a YEAR? We wanted to swim this summer--we had promised William he could swim again in a few weeks! The gentlest of surgeons smiled at me sheepishly, "I'm sorry I had to be the bearer of bad news on this one." Well. I'd rather know than not know.

When he left, a new friend, Christina, from my Multiples club came by for a visit. She has a three-month-old twin at LeBonheur with a trach. Her daughter will likely have it for two or three years. I know William is so fortunate compared to so many trach children, and I know that God has taken care of us up to this point and I can trust Him to take care of us. I held her child's twin sister and told Christina what I'd just learned. "Try a waterproof bandage," she suggested. Do it in the shower to see how he does, then try it at the pool. It's such a small thing, but her words helped. There are ways that we can make this next year work. We don't have to be completely on pause.

William fell asleep in exhaustion at 7:00 on John's lap. John had come up to bring me dinner. William played around him and on him, then laid his head on John's leg, closed his eyes, and was out cold that fast. I knew how he felt. John left and I turned off the lights and was asleep by 9. We both slept until 6 AM. Dr. Lyman said he would be back in the morning to check William one more time and let us check out. The last time were were here, his patient rounds tended to be very early, around 6:30, so we watched for him. I ordered William breakfast, and waited. Bernard, the little green puppet, and his Mommy came by to see William. Ms. Sara Jerkins brought him some fire and rescue matchbox cars and a coffee for me. I ordered William some lunch. Finally, at noon, the doctor walked in. He lay William down on the bed to check the trach site. There wasn't any tape or gauze in the room. No matter, he said--it wouldn't have to be re-covered right away. He pulled the tape off quickly, and William began to cry. I had seen a lot by then, and I wasn't too scared to look. The site was damp. There was some dried residue surrounding the site, and a bit of mucus showing. I didn't have time to be bothered by the sight of healing. I was too busy being shocked.

"It's almost closed up!" I exclaimed. Dr. Lyman nodded. "Do you think it might actually heal completely?! It's only been one day and it's already like this!" His face revealed little, but I thought I saw some surprise and a bit of a smile. "It might heal up completely," he said. I looked again, then up at the doctor, incredulous. "This blows my mind," I confessed. "I can't even comprehend how this can close up so much so fast. That hole was this big!" I held up my hand and put my forefinger and thumb together. "That's the body doing what it's supposed to do!" He sounded smug, like being God's helper entitled him to it. I couldn't have agreed more.

We will be checking out within an hour. My spirits are lifted, once again. I'm so grateful to God, once again. We'll have to see how things look over the next few weeks, but I was reminded today that this isn't something I have to worry about. I'm not in charge. I just get to watch and marvel.
William, playing his sax before surgery.

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