The first steps of a journey

Monday evening, we went to see David, Jasmina and Sébastien the day before their flight to Toronto. When we arrived, they told us that they had learned of Finton’s death – a little boy, younger than Sébastien who had also received a liver and bowel transplant only last December.  He had succumbed to a number of complications, including brittle bones and the thickening of his heart. The somber news only seemed to highlight how lucky Sébastien has been so far. Without even expecting it, David and Jasmina have formed almost family-like relationships with the families who live through the same experimental procedures as Sébastien.

It reminds me of a phrase from the children’s “Series of Unfortunate Events” by Lemony Snicket that was playing on TV one lazy evening:

“What might seem to be a series of unfortunate events, may, in fact be the first steps of a journey.”

And what a journey it has been so far! I didn’t think of associating that sentence with this blog until I saw a very moving story. A college team mascot, Jason Ray was the kind of guy everybody liked. He tragically died a few days after being hit by a car. What is special, is that he had already signed his donor card and gave the ultimate gift to 5 other recipients – drastically improving their quality of life. I invite you to visit the website dedicated to his memory at www.RayofHope.com If you have some time, it is really worth watching the touching video on the homepage…

Under the weather

Sébastien was under the weather Thursday. Jasmina and I came back to David, Sébastien and my husband after a girl’s night out. We found Sébastien sitting on the floor of the living room watching his favorite Teletubies movie. He didn’t want to be bothered and his usual ready smile was gone. His sleeping habits had become irregular since his arrival to Winnipeg and finally on the weekend, there was an answer: Sébastien tested positive for a blood infection. As luck would have it, he contracted it here in Winnipeg. He’s been given antibiotics, but still isn’t quite himself.

The return to Toronto is scheduled for tomorrow… David and Jasmina are moving to an appartment on November 1st, one of the reasons being that they’ll be able to qualify for health coverage in Ontario, or OHIP. The appartment isn’t far from the hospital. We’re happy for them and hope that the return goes well!

Trying not to think of how much we’ll miss you!

Jasmina forwarded a link with the request that I put it on the blog… The liver foundation is auctioning off various items on e-bay in the hopes of raising awareness and collecting funds for pediatric liver disease research. Check it out!

We try not to think of Sébastien’s upcoming return to Toronto… every visit with him flies by. He makes us laugh with his gestures and his smile lights up the room wherever we go. Strangers can’t help but smile back. He is such a tender boy… he’ll lay his head on you when you hold him, he’ll blow kisses when it’s time to say goodbye, he’ll tell you how much he loves his parents by spreading his arms far apart… We try not to think how much we’ll miss him.

Last week he had a skin biopsy for a strange rash that has appeared in big and small red circles, like rings. While awaiting the results, David and Jasmina aren’t too concerned, and life continues for them with its visits and home-made meals. The return to Toronto is planned for October 30th… apparently trick-or-treating there is better.

The little things that count

Monday October 15 was to be a day when bloggers would write about the environment (notice the lovely badge to the right?) … I only learned that a bit too late, however, I thought I wouldn’t defer it until next year and write about it anyway. Someone reminded me over the weekend: “Don’t forget the importance of little things”, and it’s true! Little things like smiles, a hand-written card, a call, a job well done, a warm welcome, a fall walk, a clean kitchen… little things that add up and make a day more beautiful.

In little things, Jasmina and I like to be attentive to the environment. Here are a four less known facts:

• We both use Norwex products
• We both like to incorporate as much fresh food as possible in our diets (avoiding preservatives, etc.)
• Jasmina had Sébastien’s nursery painted with a paint containing low VOCs
• We both have compost bins in our backyards

There are other cool ideas:

• Greendimes: stop your junk mail, plant a tree
• Read an environmental blog: pick your favorite
• Check out the Lululemon manifesto: do good and feel good
• Bottled water: an excellent article, long but worth the read
• We are what we do: take action, have fun!

What little-known environmentally-friendly things do you do?

This blog has goals!

I’m always happy to meet people from David and Jasmina’s many friends and have sometimes been asked: “You’re the one who blogs?”. Being a rather shy person, it makes me blush to think of the 50 to 100 people who regularly read the blog. Since you have the consideration of reading, I thought I’d share with you the goals of this blog.

Place de choix concentrates on four main subjects:

1. News and anecdotes of Sébastien
   (Anecdotes, Fundraising, Superstar!, Moment’s notice)
   Stories, conversations, up coming events, media news and emergencies.
2. Explanations of his medical condition
   (Medical terms, Transplant)
   Technical details… things that pertain to his health, be it various therapies, or precisions on his medications, his kidneys or his transplants.
3. Parenting
   (Parenting)
   This area I hope to develop more as I assume that many of the blog readers are parents, or may have some interest in parenting. Sometimes it might be cool articles, gift ideas for children, or simply thoughts on parenting today.
4. Fun and inspiration
   (Inspiration, Varia)
   Sometimes, it’s good to have a break and laugh. For all who know David and Jasmina, they like to have fun, spontaneous, sometimes-mischievious fun! And other times, it’s good to feel inspired, to know that others have gone through difficult things as well.

What motivates me to write?

• First and foremost, it’s you, the readers of the blog, with whom I share a common interest. You, who want to learn more about what a child’s life is like after a transplant.
• I’m also motivated by wanting to better understand Sébastien’s journey… what he goes through, and also by wanting to accompany his courageous parents, David and Jasmina.
• It’s a choice… I wanted to help in a small way, to shine a light on a special story, so very unique, it had to be shared.

What are the goals of Place de choix?

1. To inform and inspire
2. To build a community

Personally, I try to write 2-3 trimes a week, and I try to write articles that are well thought out and informative. If you have ideas, comments or suggestions, never hesitate! There’s always room for improvement!

Medication schedule

Out of curiosity, I asked Jasmina what Sébastien’s medications were, aware that they change according to his health. Jasmina is always happy to oblige and provided me with his schedule, already typed out and organized…

• 3:00 a.m. – Domperidone (1.6 ml)
• 6:00 a.m. – Omeprazole  (1 ½ tablets)
• 9:00 a.m. – FK (0.5 mg-1 tablet), Penecillin (2.1 ml), Calcium (½ tablet) without feeds running, taken orally, D-Vi-Sol Cholecalciferol (1 ml) (Vitamin D)
• 10:00 a.m. – Domperidone (1.6 ml)
• 3:00 p.m. – Omeprazole (1 ½ tablets)
• 4:00 p.m. – Calcium (½ tablet) taken orally
• 9:00 p.m. – FK 0.5 mg (1 tablet), Tacrolimus, Replavite (½ tablet), Penecillin (2.1 ml), Calcium (½ tablet) taken orally
• 11:00 p.m. – Domperidone (1.6 ml), Omeprazole (1 ½ tablets)

Sébastien’s feeds are regualted at about 645 ml of formula per day, fed through his central line, starting in the late afternoon and ending in the morning.

Dialysis days (Monday, Wednesday and Friday) bring a slight change to the schedule, as Sébastien wakes up for dialysis at 7:30 a.m. Saturday morning is bloodwork, and on dialysis days, Sébastien is weighed… his least favorite morning ritual! During dialysis, the nurse administers two other medications: Calcitriol and Darbepoetin.

Eight different medications a day, ten on dialysis days, four of which are vitamins (Calcitriol, Replavite, Calcium and Cholecalciferol), and only one major anti-rejection drug (Tacrolimus). The four remaining treat different things; Darbepoetin for low red blood cell counts – due to kidney failure, Domperidone to increase movement through the digestive system and inhibit nausea and vomiting, Omeprazole to block acid production in the stomac – as Sébastien has acid reflux, and finally Penecillin, which generally prevents infections especially in the blood.

Considering all that, Jasmina and David have a fantastic memory! And on a lighter side, things could be worse.

Check out the blog on Moday for a list of this blogs goals.

Taking it for granted

Sometimes I’m asked a question about Sébastien that takes me by surprise… “Does he still have an ostomy? Is he re-connected? Does he eat? Does he walk?” They’re questions I’ve already asked too, and I forget that what I take for granted is sometimes unknown to others. More often than not people simply ask how Sébastien is doing, without the finer details of his medical condition. But, that is what the blog is for… the medical details. After all, we want to raise awareness here!

Does he still have an ostomy?
Yes, Sébastien has an ostomy which helps the medical staff keep tabs on his digestion. It was to be removed a while back, but rather than having Sébastien go through another operation, the team in Toronto decided to wait, and combine operations instead. Sébastien understands that when it is time to empty the ostomy (every so often in a day), it is done in the bathroom, and he is pretty good about it, though at times the smell can make him gag, as he is quite sensitive to smell, Jasmina tells us.

Does he eat?
Sébastien’s diet is very closely watched due to his kidney failure, since last year. He is placed on feeds in the afternoon and evening, which decrease his hunger. He plays with food when he is at the table in his high chair, and pretends to chew like the adults. His intake of fluids is also limited, this because fluid overload is a problem that could lead to others when you have kidney failure.

Does he walk?
Sébastien is cared for by an excellent physiotherapy team in Toronto. David and Jasmina continue his exercises at home, usually when there isn’t any company, as the extra effort on Sébastien’s part makes him whine, a high-pitched kind of cry that can break your heart if you’re too soft! Sébastien has a tendency of doing the splitz when he sits down, and to counteract that, Jasmina will ask him: “Sébastien! Make your feet kiss!” making it like a game. He puts some effort into bringing his legs and toes together, and sometimes he’ll do it spontaneously by himself, and look to see if we’ve noticed. The more difficult exercises involve getting him to stand to reach for toys on the couch. Jasmina or David sit on their feet behind Sébastien, who sits up on their knees, feet together. Jasmina or David will place a toy away from him on the couch, and with alot of enthusiasm, encourage him to “go get it” by standing, as they kneel. Crawling is not his favorite idea either, as he prefers to scoot about on his bum in circles. He is also learning to bend his leg to reach over for a toy, rather than doing gymnastic-worthy stretches to get what he wants.

It may seem a bit overwhelming as Sébastien has to develop his gross motor skills AND deal with his kidneys… But, he couldn’t be better placed to have a family that is up to the challenge!

Do you have questions you would like to ask? We would love to answer them! Write them in the comments or send me an email at: jpalud at gmail dot com. Tune in Friday for a look at what a day with Sébastien is like.

Timeless

Sunday was a carefree day… Lunch at Tall Grass Prairie, a walk from the Forks to the Parliament grounds, during which Sébastien fell asleep, and then supper, delivered to our door as Sébastien sat content on the floor, hooked up to his feed of formula. Apart from the schedule of medications and feeds, there is a sense of timelessness with Sébastien and his parents… like a quote from Kahlil Gibran:

The timeless in you is aware of life’s timelessness; and knows that yesterday is but today’s memory and tomorrow is today’s dream.

Wasn’t it yesterday’s dream to be able to go out with Sébastien, without worrying that his ostomy was bleeding? Wasn’t it yesterday’s dream to have Sébastien sit by himself? To hear him respond with his soft words, to gesture his feelings of love and show us what he wanted?

Friday night David organized a surprise party for Jasmina and Sébastien, and as some 50 guests, adults and children, crowded into the basement of their home, Jasmina didn’t suspect a thing. And when the garage door went up, we all stood hushed until she came in and discovered we weren’t robbers. If this post were a card with a wish, it would be a wish that Friday’s party would erase some of the sadder memories that surface from time to time.

And tomorrow is still full of new dreams… To see Sébastien run with new kidneys, free as a bird!

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