Chandra's Journal
November 20, 2005…
Well, last week shortly before 3 am on Wednesday morning, the hospital called us again with another liver offer for Canon. They told us to be ready at the airport at 7:00. We had a little bit more time than the previous call, so I took a shower, tweaked the suitcases, even semi-cleaned the kitchen all before 6:00. Dean, Rhonda and the boys came over at about 6:30 to follow us to the airport and take Creed home with them from there. This time the hospital was able to send one of their own planes with the Texas Children’s Hospital Kangaroo Crew logo on the tail. Gary and Sondra were the medical personnel on board. As part of their transport protocol, they took Canon’s temperature before we took off. 97.7 (Canon and I both run about a degree low normally). We said our goodbyes to the McIntoshes and Creed, sure that this was the real thing.
When we arrived at the hospital, my parents and Brad and Dan (twin brothers) were already there waiting. We took Canon to his room on the 11th floor, where they told us we would only be prepping and waiting for an OR time. Shortly after we arrived, a nurse came in to take vitals and Canon’s temperature was 100.0. Curious. But it was rectal and the earlier temperature was axillary. We were told that a GI fellow would be up soon to do a thorough exam to determine Canon’s readiness for the transplant. When he did his exam, he mentioned that he saw some redness in his right ear, some redness in his right nostril, and also in his throat. At that point he told us, “It’s not my decision to make, but I will pass this information along to Dr. Karpen, who will make the call.” Drew said he knew right then that we would be going back home. But when the doctor returned an hour or so later, he told us that Dr. Karpen had decided to go ahead with transplant, and to start antibiotics immediately post transplant. Okay. Still, I think in the back of our minds there was a lack of assurance that this was going to happen.
Hours went by waiting in that room on the 11th floor. The orders trickled in… follow me for a chest x-ray… hi, I’m going to do a nasal wash… we need to start an IV… By far the worst part of the day was the fact that Canon was not allowed anything to eat or drink after we received the call in the middle of the night. So, by mid-afternoon Wednesday he hadn’t had anything since a drink before bedtime the night before! Over 22 hours had gone by since his last meal. So when the nurse tried to start an IV, she could not hit any veins because he was already dehydrated. His floor nurse tried first with two nurses helping. After about ten minutes of torture for all of us, they gave up and went to recruit some help from their go-to IV guy on the PICU floor. He came down with a couple of his own helpers to save the day. He was convinced he could do it after studying his arms carefully, and the process began again. My job (that I gave myself) was to hold his hand, and to be visible and audible over everything else. The only way Canon could hear me over his own screams was if I continued to talk and sing directly into his ear. So that’s what I did… for what seemed like forever. It was then I realized that Canon was so dehydrated that he wasn’t able to cry tears anymore. It was awful. After that guy gave up and I scooped Canon up off the table and out from under the oppressively bright lights, I wanted to tell them all to just forget it. Unfortunately, that wasn’t an option. They HAD to have IV access in order to draw blood for labs and to start fluids. So, the first go-to guy deferred to another nurse he knew somewhere else who knew how to find adequate veins with a small sonogram machine. So he was called down and arrived with the machine and his own posse. Someone had also called Shay, our child life specialist, to come down to help distract Canon. The lights were turned down to do the sonogram. He found a vein that he was sure he could hit and… here we go again. Canon had probably five different hands bracing him down as he tried to fight against the pain. His face turned bright red as he was crying and I remember consciously telling myself to be still, to stay right there where he could see me, still fighting my very strong urge to shout “STOP!” Finally, they were able to draw the blood they needed for the labs and they got him wrapped up with a shield over the site so he could not pull the tubing out. I picked him, hot and hoarse from all the crying and we began to walk back to the room. On the way there, we saw the team approaching us in the hall, about eight doctors. When we met, one said, “Let’s go back to his room and talk.” Drew asked our family to wait outside and the transplant team filed in. One of the surgeons took the reins and began to explain that Canon temperature had gone from 100.0 to 100.2 to 100.4 in the hours that we had been at the hospital, there were mild infectious symptoms that were noted by the GI fellow, and his white blood cell count was elevated. All of these are indicators of some kind of infection going on, perhaps a mild ear infection. At any rate, he is not in prime condition to undergo transplant at this time. As soon as the words came out of her mouth, no one spoke and I felt like all eyes were on me, maybe waiting for me to explode. I took a deep breath and didn’t speak, afraid I would cry, and just nodded. I looked at Drew and could see the emotional fatigue all over his face. I know there were a couple of other doctors who said other things at that point, but I don’t remember what they said. I was in a fog, asking God why we had to put Canon through a day of pain and hunger and exhaustion (he was finally asleep in my arms at this point) if we were not able to give him the new liver. But, even as I was fighting the tears that were welled up in my eyes, I looked at Dr. Karpen and whispered, “Thank you.” I looked around me at all the white coats and all the low faces and knew that this was not what any of us wanted, but it was best for Canon. “I know I don’t look very appreciative right now,” I said in a breaking voice, “but I am.” Dr. Karpen knew exactly what I was trying to say. He looked at me, nodded, and said softly, “And we’re not apologetic for our decision, but we are disappointed along with you.” I knew at that moment that he was putting himself in our position, as a father himself.
At that point, they discussed having Canon stay in the hospital in Houston for a few days, on antibiotic, essentially waiting to see if he could shake the infection before another liver might became available. Drew and I decided we would rather just go home and come back when they call again. They put him on Zithromax and another “hold” through the weekend. We ended up spending the night there while they ran fluids by IV because he was so dehydrated. I slept in the crib with Canon (it was a couple feet longer than a normal crib, before you feel TOO sorry for me!) and Drew slept on the couch.
Angel Flight took us home on Thursday and we arrived feeling like we had been run over by a train. Barely functioning on the past three nights of sleep we had (about 2:30 am on Tuesday a northern blew over a dead tree in our backyard and knocked out power to half of the house; Drew was up trying to cut down limbs in the middle of the night), we felt like we were sleepwalking through the next couple of days.
Yesterday (Saturday) was Drew’s birthday and I tried to make it special. It gave us all something positive to concentrate on. On Friday I took a chocolate birthday cake up to Travis for him to share with his staff, covered his office door with butcher paper and wrote “Happy Birthday to me!”, and sent a school-wide email from his computer that said, “Colleagues, Tomorrow is my birthday and I’ve had a very stressful week. If you see me in the hall, please tell me to have a great birthday. Thanks, Perk.” I did put a note at the end saying that it was really from me. Drew told me that later that day, at the Fantastic Friday assembly, all the 7th graders sang “Happy Birthday” to him! Then yesterday, he opened presents from Canon, Creed, and me. Judy came over to babysit so we could go out to eat and to a movie. We had a great night! It’s so amazing what a difference it makes to be purposeful about getting out by ourselves lately. We all feel so much happier and closer.
So, as of tonight we’re waiting for the next call. Jaymee, our transplant coordinator, told us that Canon is getting offers weekly (even when he was on the chicken pox “hold” he received offers we never knew about) and to be ready anytime.
I feel like I’m presenting my son like a boot camp soldier presents his bed, foot locker, and uniform in the morning to a drill sergeant. One little crease, spot, or blemish anywhere… and we’ll have to do it all over again. We’re doing the best we can to keep Canon healthy. We’re not even taking him to church anymore. It’s going to have to be a God-thing, really. Because, honestly, is ANY child 100% healthy this time of year??
Okay, people are going to think I’m totally crazy now. But I had the weirdest dream on Friday night. I dreamed that Canon’s toys were talking, like on Toy Story! We got another call and they all marched into the backpack again, pumping each other up to keep Canon happy and entertained during the trip down and in the hospital. Isn’t that weird?! Elmo was the leader, telling the other toys what order to lay in the backpack for optimum entertainment potential. I know it’s crazy. I just wanted to write that down so I don’t forget to tell Canon later.
I do want to implore people not to stop praying for Canon. This transplant is more eminent than ever, and even though we have made two runs down there to no avail, the next call could be it. Even I have a certain degree of the ‘boy who cried wolf’ syndrome. I will probably be skeptical until they wheel him away to operate. But I will praying anyway that God’s will be done and that God keep watch over Canon’s best interests, as everyone else is trying to do as well. Please don’t wait until the surgery is over to start praying. Pray as soon as God puts it on your heart that every piece of the puzzle will fit together perfectly and at the perfect time.
It is comforting to me lately to remember that God doesn’t sleep. I think when we got the call in the middle of the night last week, one of my first semi-thoughts was "Wake up God! We need you!" I have re-read Psalm 121 to remind myself that He is watching over us even when we are dreaming.
Lord, I praise you today for being faithful to watch over my family day and night. You are bigger than our human ways and are not subject to our human limitations. Thank you that you are ever-present in Canon’s life, whether he is asleep in his bed in Amarillo, riding in an airplane across the state, or in an operating room where Drew and I cannot be with him or see him. You can see him, you can hold him, you can talk to him no matter where he is. Thank you for assuring me of that in your word and giving me that peace today. Amen.
Chandra
Psalm 121 –
“I lift my eyes to the hills – where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip – he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The Lord watches over you – the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm – he will watch over your life; the Lord will watch over your coming and going both now and forevermore.”