Chandra's Journal
December 1, 2005
3:30 AM
Drew took the first overnight shift sitting with Canon, and I got here about 20 minutes ago to take the second shift. We did a Ronald McDonald room for the night, so I was able to slip into pajamas and crawl into a bed for about 4 hours. I didn’t realize how much I take that for granted at home. I just expect it, but there are lots of people around the world for whom that’s a luxury.
Canon is doing really well. Yesterday Dr. Goss had the nurse take out his NG tube (from his nose to his stomach), his catheter, and one IV line. That helped him feel a whole lot more normal, I’m sure. Dr. Goss also took off all the dressing over his incision site. So we were able to see exactly where they cut to do the transplant. It’s larger than what I expected. It looks like an upside-down Y (like a Mercedes symbol) and each spoke is about four inches except the lower spoke on the left is about six inches. Jenny told us yesterday that usually the incision is more uniform, but Canon’s liver was 3 times the size it should have been and so it took a little bit longer cut on one side to get it out. There are steri-strips holding the outer layer together and those will just fall off on their own later.
I’m praying today that Canon can have a real drink of something very soon. He said “drink” to me several times yesterday. I had thought that as soon as the NG tube came out that he could have something, but since they did manipulate his intestines in surgery (they had to use some of his small intestine to create a bile duct for his new liver), they want to be sure that his gut has had enough time to heal before they make it have to work. Also, he’s still requiring doses of morphine for pain and morphine has a couple of side effects like slowing down the gut and urine retention. We were concerned last night that he wasn’t urinating on his own after they took the catheter out and ran some diuretic. They were going to give him “one more hour” to try to go on his own before they put a catheter back in to drain his bladder. He must have overheard that plan, because he promptly soaked a diaper and proved to everybody that he would have none of that yucky catheter stuff anymore! Since then I can see a slight improvement in his puffy appearance.
We were cleared by the doctors to be moved to the transplant unit. But evidently the hospital is busting at the seams; there are 400 rooms in the hospital and yesterday they had 480 patients on the census! So there’s not a room available up there yet. Hopefully today we’ll be able to move. The benefits of being ‘on the floor’ are that he can more than 2 visitors at a time and there’s a couch in there that we can lie on at night; the sacrifice you make is the one-on-one nursing care.
Daddy and Danley had to go back to Austin yesterday. We felt so sorry for Daddy because he never got to come back here in PICU to see Canon. He had been feeling badly last week and so he made the decision himself not to come back with Canon so as not to expose him to any illnesses. He stayed in the waiting room watching the rest of us go in and out, I’m sure his heart just bursting wanting to see him for himself, but had Canon’s best interest in mind the whole time. It was so nice that Daddy was here so that he could have a front row seat in order to keep Canon’s website updated. Last night Daddy handed me a stack of paper that he had printed out for me to read. It was all the guestbook messages from Monday morning through Tuesday morning. I had not had an opportunity to get on the internet anywhere, so even though I was keeping up with my journal on a laptop in Canon’s room, I had no way to read the messages (that I’ve really come to rely on for daily encouragement and support). It was so great to read through and see how many people were praying for Canon along with us during the surgery. The website guestbook has been such a source of strength for me and Drew and we will always be so grateful to my dad for putting it together and to everyone who has been so diligent about leaving us encouraging notes. I feel like all of those people are my closest friends. I hope I can get up to the family library sometime tonight and read through the latest notes.
Dean and Rhonda also had to leave to go back to Amarillo yesterday. They left Canon a little stuffed Nemo to sit on his bed with him and a . Dane and Dayton stayed at home with the Moores, but have been anxious for updates and are already asking Rhonda when they will be able to visit. I can’t explain what amazing friends they have been. When she started keeping Canon during the school day last year, we had absolutely no idea that we’d be facing a liver transplant in a year. But ever since then, I have felt our burden so much lighter knowing that Rhonda loves them so much and at any point can be a 2nd mother to them. Being able to leave Creed with her in the middle of the night (twice) was so valuable because as much as we missed him for that couple of days before he got here, I didn’t worry about him being safe and happy. I know it was not cheap to fly down here at the last minute, but they didn’t think twice about it.
New visitor on Day 2 (Wednesday) – Stacy Beaty, Drew’s friend from high school, came by to visit. He is now an orthopedic surgeon at Hermann Memorial Hospital, just down the sidewalk from Texas Children’s. I know it really perked Drew up to get to see him; there’s nothing quite like a visit from an old friend.
3:00 PM
Canon has seemed more uncomfortable to me today than yesterday. Yesterday, he would watch TV for a while or let me read him a book or sing him a song while he was awake. Today, it’s a stretch to get him to be awake for more than a couple of minutes without crying. His doctors are still saying that he’s doing incredible and all of his numbers look fantastic. I guess it’s just difficult to hear them say how perfectly he’s doing, but know inside that I haven’t seen Canon smile for over three days. He’s just not himself and I miss his personality desperately. I want him to play our little games with me. Like when I say, “Let’s see…”, he scrunches up his nose and says, “Hmmm…”, or vice versa. I’m ready to have my Canon back.
Visitors on Day 3 (Thursday) – Uncle Casey, Brad and Karen Thompson. God has provided us such an amazing support system.
Also Canon received a package today from Tony, Amber, and our brand new friend Sydney Fillmore. It was a sweet teddy bear and boxes of yummy cookies with a really cool card they made with Canon’s smiling face on it!
Oh, I just saw a card that also came today for Canon from our friend Margaret Maloney!
5:30 PM
We had a “teaching” session today with Jaymee, our transplant coordinator, in which she went through all the medications he’s taking, the dosage, the frequency, the duration. First of all, I had to leave Canon while he was pretty agitated and uncomfortable to go the meeting. Linda was in there with him, so he wasn’t alone, but it’s still just so hard and unnatural to walk out of his room.
The meeting took a good 30 minutes anyway and by the end of it my head was swirling with so many names and number of milligrams and milliliters and side effects and complications that tears were welling up in my eyes when I left. When we got down to the waiting room, I sat next to Karen and just cried. I didn’t know the right answers when she asked, “Okay, what’s the Prednizone for?” and “When do you give him the Valcyte?” and “What’s the dosage of Baby Aspirin?” and “What are the side effects of Bactrim?” I left realizing I don’t have a clue what I’m doing. What if I screw up? I didn’t get the impression that Drew was intimidated by all of it, though, and he knew more right answers than I did. I just feel so frustrated that that stuff is not sticking in my head. The responsibility is mine and I cannot miss a thing where his medications are concerned. I should make myself some flashcards and start quizzing myself when I’m up in the wee hours. I guess that’s the teacher in me.
We have been trying to locate some kind of apartment to stay in once Canon is discharged. We have to stay local for a month for the liver team to continue to monitor the new liver. It’s going to be challenging to be completely available to Canon and Creed in a place that’s not home. Even now, I know that Canon needs me the most, but sometimes I’m sitting here wondering who has Creed and if he needs me right now, too. Thank God that Creed is so laid back! Mom has been taking him with her at night to her cousins’ house about 15 minutes away. He has been doing really good, still sleeping all night and eating well. During the day is the hard part because Creed for sure can’t be in Canon’s ICU room, and is even not allowed in the PICU waiting room. So, our family is never all together at the same time. Paul and Melanie took Rylan and Creed up to a Ronald McDonald bedroom to try to take an afternoon nap. But their rooms are only available from 1-5, and Creed sleeps on and off throughout the day still. When he gets sleepy, people have just taken turns holding him in the separate child-friendly waiting room (which you might guess is not very quiet). I don’t know what we would do if we didn’t have our family here to help. It will help when they don’t have to be quite so separated.
10:45 PM
Canon is asleep, seemingly relaxed. When I was on the early morning shift today I managed to crawl into Canon’s bed beside him without disturbing him. I slept on my side holding his hand in mine. It’s looking pretty good right now.
Chandra