Discharged – recharged?

Monday, Sébastien was discharged, but, Sébastien spiked a fever during the week, and was re-admitted just recently. A fever is never just a fever with Sébastien… 39.9 brought on a blood culture and a biopsy of the bowel, to see if there were signs of rejection. Sébastien’s grandma, on a brief visit back from Quebec, recounted over the phone that the medical team didn’t communicate the biopsy results, which is usually a good sign. Her motherly instincts saw that Jasmina was tired after a few sleepless nights and advised David to leave for Toronto earlier. So whereas I was going to blog, mentionning the details of the Organ Awareness Celebration that will be occuring on Friday at Niagara Falls, I doubt Jasmina, David and Sébastien will be going. Sébastien will be beating the flu, and Jasmina will catch up on sleep. But you won’t find them complain about the missed opportunity… Instead, it’s like Martha Beck writes in Expecting Adam:

Adam’s arrival transformed our relationship to work more dramatically than any other area of our lives. It is amazing to live with someone who genuinely couldn’t care less about Getting Ahead, someone who is absolutely committed to finding joy in the present moment. The belief John and I shared before Adam came along – that rigidly deciplined, distasteful work was the one and only path to a good life – now seems both horrible and downright silly, like believing that we could make it rain by performing human sacrifices. Adam’s birth convinced us that fate was quite capable of crushing our best-laid plans like so many dead beetles. In the face of such uncertainty, the only things that seem to us worth doing are the ones that allow us to experience the strange and eventful journey of life in its full richness.

Wishing you all a day with a taste of life’s richness!

Discharged

Sébastien was discharged Monday night and the flurry of coming back home and having to unpack postponed our call to Tuesday. Sébastien stopped bleeding without the hospital discovering the source of the bleed and Jasmina is expecting that in two to two and a half weeks Sébastien might bleed again. Hopefully by that time the medical team will have decided if he undergo a barium test or a camera pill test.

“You should see him! He’s eating like you and me!” Effectively, during the call, Sébastien was not at all pleased to have his Mama talking on the phone… “Apple!” he would interrupt. “He’s eating an apple. He had real cereal this morning, with milk and he eats pasta… and this week, he had his real first stool.” At one point Sébastien softly asks for “pop” (meaning popcorn) and Jasmina quickly deters his attention to something else. His favorite raunchy ranch treat isn’t allowed anymore, as the medical team wants to control his acid levels, among other things.

This coming week is Transplant awareness week and this Friday, Jasmina and Sébastien are headed to Whitby to speak of organ donation “in front of 400 students!” Jasmina says, and I imagine that she’s a little nervous and excited. Good thing her fear isn’t public speaking… Niagara Falls will also be lit in green and David and Jasmina have been offered a ride to attend the evening of recognition for organ donation. Our call ended, Sébastien not willing to be distracted by Barney, who is coming to Toronto soon, “Sébastien would be so happy to see him!” He didn’t want to admit it on the phone though…

To everyone, a good day!

Readmitted

I asked Jasmina, on my first evening in Toronto, to show me how she administered Sébastien’s 3 a.m. medication… thinking that I might be able to do it during the week so that she could sleep. The saline was hung, the line prepared, the medication hung and a second line prepared and connected to the first. Then Jasmina would test Sébastien’s stomach pH by extracting stomach fluid and squirting it onto a thin litmus strip that reminded me of high school chemistry. We waited for the color to appear and compared it to the colors on the container. That night it was slightly acid… “maybe because of the tomato sauce on his mini-pizza bagels” Jasmina concluded. Sterilizing the ports to Sébastien’s central line with swabs, Jasmina then checked for clots, taking out a small amount of blood, before flushing the line and connecting the medication and saline. By then I’d decided that it was too complicated for me to do without assistance and I wouldn’t have wanted to be responsible for an error, as small as a bubble in the line. Jasmina found it funny, and said that to her, it had become as second-natured as changing a diaper. So, during my stay in Toronto, I didn’t administer any meds, and was content just to clean the feeding pump in the evening and provide Jasmina with an opportunity to nap while I took Sébastien out for a walk. As soon as I bought him popcorn, we were friends, and I could have taken him anywhere so long as the popcorn didn’t run out.

But really, Sébastien is sweet… and I think Gerhard and Steffi are finding that out for themselves! Since their arrival Saturday, March 29, Sébastien was readmitted back to SickKids on the following Tuesday because he was bleeding. Since his stomach pH is normal, the medical team is mystified as to the source of the bleeding. They are considering using a pill camera, as seen here on Web MD. If the test is approved for Sébastien, he would be the youngest patient to receive it. Despite the frustrating unknowns, Jasmina is her energetic self, and her brother and his girlfriend have been to Niagara Falls and to the CN Tower. On Place de Choix, we wish you a safe trip home! Gute Reise Gerhard und Steffi!

We would have chose you!

I left work for Toronto in the middle of a rare and monotonous project, comparable to copying the phone book to Excel. I came back with the hope that my replacement had had the time to finish the work I’d begun. She didn’t. The one thing that this project has given me is the chance to listen to audio books. I’ve listened my way through hours of “Freakonomics”, “What Remains” and finally the short “About Alice”. That last one related a story that reminded me of Sébastien… Alice, the wife of journalist and novelist Calvin Trillin, had been at one point a summer camp leader, and befriended a little girl she took pity on. The girl, called Elle, had developmental problems and was fed like Sébastien, through a feeding tube in her stomach. As the story goes, Alice was sitting with Elle during a game of “duck, duck, goose”. Elle was tagged and asked Alice if she wouldn’t mind holding the letters she had in her hands as she ran around the circle. Alice accepted, and holding the letters, she could see that the one on top was from Elle’s mother. Alice’s curiosity got the better of her as she wondered what kind of parents this happy and energetic girl would have. She peeked and read a sentence: “If God had given us all the children in the world, Elle, we would have chose you.”

In many ways, those words sum up the time I spent in Toronto… The rush of being in big-city Toronto, feeling energized by the throngs of people that you pushed your way through, the stroller like the bow of a ship in a sea of people… The regular visits for dialysis, the friendly staff and the cheers that would arise from the annual SickKids radio-thon as patients and parents told stories and people donated… The staff at the stores in the mall that all loved to see the handsome Sébastien, some remembering him from previous visits, others finding him too cute to ignore… The pulse of it drew me in and I chose to enjoy every moment. Sébastien would make us laugh, asking us in his usual soft voice at inopportune hours for “pop” or “om” his words for Raunchy Ranch flavored popcorn from Kernels and food, preferably of the mini-pizza-bagel variety. And while he ate, he’d have a ritual of reenacting “Elmo”, “airplane” and “wow”, spreading his arms straight out for “airplane”, and holding his hands to his cheeks for “wow”. In the end, Jasmina included that on his star, posted on the radio-thon’s wishing wall… That Papa could always be here, and that Sébastien could visit Elmo.

In the afternoon, or evening, Sébastien’s favorite game to play was bowling. He’d request it by pointing to the pile of toys under the living room window and saying “ball”. He would patiently wait for me to lign up the plastic pins, while holding the slippery ball against his belly. He would throw the ball every time, each time edging his way a bit closer to the pins, until I’d say it was time to “scoot” back, and I’d slide him back so that his feeding tube hung less taught from his pole. As the game would go on, I decided he would wait less if he helped set up the pins along with me, while Dora held onto the ball. Then he would take the ball, whack down the pins closest to him and sometimes give Dora, or Elmo, or Diego, or Barney a turn at throwing the ball to the farther pins. I discovered he had pretty good aim…

And so many times throughout my stay, when Sébastien would charm us, or make Jasmina laugh, she would say: “I love you Sébastien!” or “I just love him!” as though the joy of having him with us was too much to hold in… What she meant all along was: “If God had given us all the children in the world, Sébastien, we would have chose you!”