That was supposed to be the title of this post… David, Jasmina and Sébastien were coming home today, on a flight arriving in the afternoon. But… David called yesterday morning and said that the liver numbers were high. Meaning a biopsy in the next few days and, perhaps only a steroid treatment that could be administered here in Winnipeg. Sébastien is happily oblivious to his liver levels… spreading smiles wherever he goes. More news soon!
Archive for the 'Anecdotes' Category
David is back in Winnipeg, continuing his back-and-forth swing between home and Toronto. He continues to delight us with anecdotes of Sébastien’s improvement. To say that we’re proud of our godson’s progress would be an understatement…
“When we go to the mall, he makes everyone laugh - he waves to everyone! I guess it’s the sparkle in his eyes or something. When we went in the elevator at the Delta, I asked him: ‘Where are we going?’ ‘En bas!’” David laughs telling us motionning like Sébastien does, pointing to the floor. “Just the way he says it! I asked him: ‘En haut?’ ‘Up!’ he said pointing to the ceiling.”
I show him the group created on Facebook and we look at the pictures and video posted by Echo the mother of a little girl at SickKids. The video shows Sébastien sitting with David, going through the motions of the “Head and shoulders, knees and toes” song, sung by Dora, during the Gift of Life celebration at SickKids. Noticing Sébastien’s soother, David says: “Sébastien doesn’t have his soother anymore, he doesn’t want it.”
Sébastien’s platelets are in the range of 265… the highest amount he’s had so far. He’s producing them himself, unaided by transfusions, and receiving pheresis once a week, besides the usual dialysis. “He gets so excited when we leave the hospital. He doesn’t like being in the hospital at all!” David continues.
Sébastien’s good health has prompted doctors to allow Sébastien to be discharged and a trip home to Winnipeg is being planned for this month. Jasmina is very excited to come back to Winnipeg and enjoy some family time in her own house. Afterall, it has been a year and a month since Sébastien left for his transplant… a small hospital room was “home” with visits to Ronald McDonald house when things were well, and when Sébastien’s health was stable enough to carry all the supplies and equipment nearly a kilometer. And then with a recent move to the Delta, nearer to the hospital, under the same arrangement as with Ronald McDonald House, laundry still needed to be done at Ronald McDonald House. It’s not a short walk when you have a heavy bag of laundry to lug along.
Until Sébastien and Jasmina come home to the leaves changing colors, Sébastien still blows kisses to strangers, or will “steal” your nose and throw it away, like his “Papa” does to him to tease.
Dear Sébastien,
We are so happy to hear how you are doing well… You have 235 platelets already since the last time we talked to your mom and dad, when it was 167 last Friday. And, you’re making them all by yourself! Hooray! We saw pictures of you last night… you look so happy at your one year post-transplant party! Excited to see Dora, smiling in the company of your parents, grand-parents and friends from the hospital. And you’re growing! You weigh 21 pounds, and your vocabulary grows steadily. We pretended to be Dora on the phone, and you decided to talk a bit, although you seemed to want to play instead… we imagine you in your high chair, with your new toys. Your mama says that you are also doing well in physiotherapy. Perhaps the next time we see you, you’ll be on your feet!
It must be nice for you to be sleeping away from the hospital. Your mama says that the hospital is even talking of discharge… You’re a few steps closer to home little one! We’re proud of your progress! We send you our love…
Your godparents
“How is Sébastien?” I ask David’s mother, after a choir practice. “Really well!” She tells me. She’s wearing his t-shirt, the latest version, with Sébastien in a blue-hawaiin t-shirt and the words: liver and bowel transplant written on top.
“How did the party go? Were there lots of people? I’ve tried contacting Jasmina, but she hasn’t been able to reply…”
“They’re quite busy, after the party and all of that… It went really well. In the morning, there were 30 children and in the afternoon there were 60 people.”
A little circle of people form around us, everyone interested in Sébastien’s progress and latest developments. “On Sunday they opened the gifts… He would open gifts and then set them aside and say ‘All done’! And you know how you fold socks? I would fold them loosely and give them to Sébastien and he’d pull them apart. We’d exclaim: ‘Sébastien!’ and he would laugh, throwing them behind him.”
Already back from their quick visit, Sébastien’s grandma was nonetheless delighted to see him so well. The other times they’d gone, he was usually very sick, but this time, he was himself: a happy and active “little monkey” as Jasmina would say.
Marking a year since Sébastien’s transplant, a power point was prepared and you can see it here: Gift of life The event was filmed, and when we receive the dvds, we’ll be posting some clips on YouTube… so keep posted!
Writing for the BlogCatalog Organ Donation Awareness Campaign
Published July 18, 2007 Anecdotes 4 CommentsOne year ago, August 11th, Jasmina received the call. It was a day like any other. I was at work and during the noon hour, Jasmina and I had talked over the phone. We’d said goodby as Jasmina expressed again her greatest wish: “Sébastien needs a transplant sooooon!”
Sébastien was a pitiful sight. A small child hovering just over 10 pounds at 20 months, he would lie on a pillow, as parents, family and friends would rock him. The TPN pole with its assortment of tubes, was almost always at his side. There was always the danger that he would bleed from a cut in his ostomy, and as his liver had grown weak from his dependence on TPN, such an occurance could be fatal. One easily recognised the jaundice, the almost lime-green eyes. On a good weak, with few bleeds, he would receive 2 or 3 blood transfusions. On a bad day, he could have as many in 24 hours. Jasmina’s hope only seemed to grow as the situation became more desperate, and we silently began to wonder if they would operate a weakening child.
The phone at my desk rang, not an hour since our conversation. I answered only to hear a small voice amid tears. Blood draining from my face, I half expected to hear that Sébastien suddenly died. “Toronto called…. they have a transplant for Sébastien!” In near disbelief words seemed to evaporate until I could find my thoughts again, emotions crowding in as I babbled: “That’s wonderful news! … I’m so happy for you! …. Congratulations!”
For David and Jasmina the days and nights blended together in unrecognised succession, hanging over the thin line that Sébastien tread between life and death. As his stomac grew over the new liver and bowels, each new day we wondered at Sébastien’s strength – a strength that continues to surprise us a year later. At that time, we couldn’t forsee all the ups and downs an experimental treatment would bring, but I’m sure that if you ask David or Jasmina if it was worth it, there would be a resounding “YES!”. For nothing in the world would Jasmina have wanted to miss Sébastien’s new-found life: his first words, the first time he would sit by himself, the daily multitude of smiles and laughs that he showers on everyone… The organ donation hasn’t just affected one life… it has affected the countless people that have come to know Sébastien and his family.
Consider throwing a pebble in the water and watching the ripples.
Sun dappled mornings, revealing the gem-shaped dew drops clinging to the blades of grass and the fresh green of a new day, bring a delicious feeling and I can almost brush away the small regret I have of having to go to an office, as my husband, a teacher on holidays, can stay home. Of some consolation however, are the occasional calls I get…
“I talked to David” my husband tells me. I can detect that he is happy, as he and David have been best friends since childhood. “Sébastien is doing really well!”
And I learn that Sébastien had been placed on a “plasma machine” and that that had saved his life. David and Jasmina rarely get into technicalities, and I am left to guess that it might be hemapheresis. Those who are nurses or doctors, do feel free to correct my google-search assumptions! Sébastien is now only on that treatment temporarily and will soon be off. He is also off the ventilator, since last week.
My husband continues: “The doctor told David and Jasmina that they were lucky Sébastien was so young. Had the hemorrhaging occured to an older person, they probably would not have survived.” With a child like Sébastien, neurons can regenerate themselves. “They haven’t gone for a CT scan, but Sébastien is moving so much, he probably doesn’t have blood clots. And they’ll be getting their room back on the ward.”
The doctor was certainly impressed by David and Jasmina’s perseverance, saying that Sébastien is alive “because of your hope and your faith”. Seeing how well Sébastien is doing, the doctor remarked: “I’m glad I guessed wrong.”
When the world says, “Give up,”
Hope whispers, “Try it one more time.”
A good friend of David and Jasmina, Roxanne, went to Toronto only recently and writes about her trip:
Hi Jacinta,
I just got home from Toronto on Wednesday. What a trip. I arrived on Monday afternoon and Jasmina stopped me a few times before going into the room. When I saw Sébastien, I just wanted to pick him up. There were metres and metres of tubes. He seemed stiff and it took some time for his eyes to follow your voice. It was difficult to imagine that a few weeks before, he was on a tricycle and talking. I couldn’t believe that they were back to this position. We went to church on Monday night. The sermon was about how we don’t get to make plans. God makes our plans. How true I thought.
On Monday night, I stayed in the critical care room with Dave. Praying. When I opened my eyes at about midnight, I could see in the shadows that Dave was sitting on a chair beside Sébastien’s bed. He had his head down. Either trying to get some rest or reading prayers from the prayer book. Earlier, Jasmina expressed her frustrations as she said that at night, the nurses talked loudly and it was almost like they didn’t realize that the kids need to sleep or that they are sleeping. She explained that they often come over and talk to them as they stand by Sébastien’s bedside. Jasmina said to pretend to sleep so that they don’t come and talk to you since they respect the parents getting a little rest. “It works like a charm” she said. As I watched Dave, I thought to myself that she was right. I looked at Sébastien. In the dim light of the room, I could see his long eyelashes blinking and looking at his dad. With the tube in his throat, you wouldn’t be able to hear him. But he quickly fell asleep again. Knowing he was safe.
Even though I was there only 2 days, what an amount of progress in those 2 short days. When I left on Wednesday morning, everyone was sleeping. When I went to his room, Sébastien was awake and trying to remove his breathing tube. He was alert and his eyes followed me without delay. It was like a different child! Dave and Jasmina gave me a stack of pictures.
Rox
Thank-you Roxanne!
Last evening, my mother-in-law called. She’d spoken with Sébastien’s grandma who is in Toronto still. “When we arrived, we thought for sure Sébastien wouldn’t make it through the night. We’d never seen him so sick.” But, the medical team worked their magic, bringing him new medications and attentive care. My mother-in-law asked if the blood clots were still present, and Sébastien’s grandma wasn’t sure. “He’ll probably be going for a scan Tuesday, and have the results later.”
Sébastien opens his eyes, half sedated as he is, recognising his parents and his grandpa especially. Wondering if Sébastien might not be mentally affected by the hemorrhaging in his brain, a neurologist had responded that though it might be slight, it would not be irreversible.
Sébastien will probably be in the ICU for some time, losing his room on the 6th floor. Only two people are allowed to be with him at one time, so Sébastien’s parents and grandparents take turns. When the medical staff has a shift change, everyone is expected to leave until the new team is in place and aware of the different cases, leaving David, Jasmina and the grandparents a few hours out.
The visits to Sébastien’s blog spiked during the last week, at the news that his situation was precarious. In one day, we had nearly 500 visits, compared to the regular 50-130. We thank you for your interest in Sébastien’s case and your concern. Your thoughts and prayers mean alot to David and Jasmina!
We tell so many people that Sébastien’s case is special… There is always something new, or unexpected – sometimes happy and other times sad. His transplant, the care and therapy he receives in Toronto is new territory, even for the medical team there. It’s hard to say what is normal and what isn’t, what is to be expected or not. And I’m sure that is why Jasmina and David live only one day at a time. And when that is too much, one hour at a time, building on a dream they have for their son…
Hold fast to dreams,
For if dreams die,
Life is a broken-winged bird
That cannot fly.
Hold fast to dreams.
For if dreams go,
Life is a barren field
Covered with snow
- Langston Hughes
The morning I was to leave Toronto for a flight to Quebec, I called a taxi. The driver was an older man with a thick accent. Perhaps he was from some distant European country. The streets of Toronto were busy as usual, the sounds of traffic echoing between the tall buildings. The driver asked where I was going.
“Quebec” I answered.
“Good for you!” he said. “I was just visiting my godson,” I continued, answering a question he hadn’t asked, “he’s at Sick Kids after a liver and bowel transplant.”
He asked me “How old?”
“Two and half”
“No fair!” he exclaimed, his voice thick and indignant.
For some reason it made me smile. Somehow, time has numbed indignance, like a song you get used to hearing on the radio.
As for Sébastien, he’d had a fever at the beginning of the week, and the doctors later discovered that Sébastien’s two-year molars are coming through. It’s been a series of sleepless nights and little comfort for Sébastien and Jasmina. Over the phone I hear his cries, that begin like the squeaks of a baby bird. A minute or two of calm, and then it begins again. Jasmina tells me it’s been 5 or 6 days since it started, as he has three molars coming through. “Some babies, you don’t even notice when their molars come through… For others it’s painful. For Sébastien, it’s always been hard, his teeth.” The medical team has suspended his chemo treatments for the duration of his molar growth. “So, I rock him and walk him all the time,” Jasmina tells me. “It’s good in a way: it’s bonding time with him!” I listen in wonderment. How does she do it?
The day spent with Sébastien went by quickly, in a flurry of constant activity. I wanted to soak everything in, before leaving in the morning the next day… The tour of the hospital, the devoted volunteers that would come by to play with Sébastien, the way he’d be, all engrossed in an activity, and suddenly point from his bed toward me, like he wanted to include everyone. The sanitizing stand at the entrance of the hospital, and the music of some event or other that wafted through the atrium, like the smell of freshly baked cinnamon buns. We’d had a late lunch that day, after David had arrived, walking to a bistro not far from the hospital. Sitting outside with our sandwiches, some yellow CAUTION tape, tied to a pillar, was gently twisting in a draught and caught Sébastien’s eye and made him grin, looking at us, and then at the tape. In the evening we ordered in – a good thai meal at a more than reasonable price.
It seemed to get dark all of a sudden… perhaps I’d lost track of the time. The hospital became quiet, the lights dimmed, the atrium more of a yellow glow, with certain sections cordoned off.
The next day, I woke and made my way back to the hospital, to say goodbye. I stopped first at Starbucks to buy a coffee for Jasmina, a “misto” in Starbucks lingo. I found Sébastien sleeping on her lap, a fuzzy blanket draped over him. He hadn’t slept well that night. Jasmina and David were up late. His blood irregularities had made him uncomfortable. It seemed as though the day before, had been one of his good days. Today dawned with another set of challenges… His mucous fistula had started bleeding the evening before and he had needed a platelet transfusion.
With Sébastien’s platelet issue, everything is a fine balance. The medical team decided to give him chemotherapy in order to reduce his antibodies, and hopefully stop them from destroying his platelets. He’d had a small dose before I came without any adverse effects. His chemo is to continue once a week for about 4 weeks.
A nurse came in, her tight blond curls and cheery smile seemed to bring a ray of sunshine into the room. My mind spun as she discussed electrolytes, platelet quantities, and other such terms… She mentioned his weight, “He’s gained a kilo in a month, which is a lot! We could continue to feed him, and he’d become a butterball, but I think we want to concentrate on his length…” Jasmina agreed and the conversation continued on as I glanced at the time. The nurse left after having gone over everything, and gently checking his heart beat, as she’d done the day before. Jasmina and I said goodbye in a long hug, with the unspoken uncertainty of when we’d see each other again.
Sunday was her birthday! If you liked this post, you can buy her a coffee! (The idea comes from Chris Garrett)
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