Une place de choix

Stoma reversal – Sebastien’s journey

mamarraine — Tue, 20 Dec 2011 23:43:20 +0000

It has been a very intense few days for us. Sebastien did really well after his surgery and when we saw him in recovery he was happy,his major pain controlled by an upper back epidoral and some more pain medication. Friday night he was then transferred to his unit and that Friday night things turned to the worst. All night long Sebastien was screaming in pain,snacking crying and us helpless as he was put on the highes dose possible for his pain epidural. After 12 hours of agonizing pain and us advocating for Sebastien to help him and praying we all with the medical team got an answer to our surprise. As his epidural is suppose to help as a narcotic with all his pain no one could explain why Sebastien would still experience this excruciating pain leaving extremely exhausted. Well, turns out that his epidural somehow wasn’t connected anymore and Sebastien for about 12 hours didn’t get any pain medication. Imagine post a major surgery with a hughe incision on your abdominal with 30 stitches,2 medium size incision,each of them on the site of Sebastiens abdomin,a tube in your nose,multiple ivs and a catheter for urine. Ouch ,ouch, ouch
After this was finally delt with it takes a good 12 hours to bring the drug level up so it has a good effect on hid pain management. Sebastien after all of this was so exhausted and finally slept and so did David and Me.
Saturday night his urine catheder blocked leaving him in pain.
Sunday morning his first poop from his rectum arrived, yeahhhh we were so happy and so was the team as this is a sign that the surgery was a success.
Pain management was still hard as again Sunday night his catheder blocked and we had to clear that to relieve that pain.
Also as he has to swallow his pills and he had a nasal tube in his nose he chocked up on his meds and he tried to clear it by coughing which caused extreme pain to his incisions. In-between all of this David and Me are alternating moving his legs,his arms, turning him onto different sides so fluid doesn’t accumulate in his longs, blow bubbles with him so he expands his lungs despite the long incision,massage his body with lotion also help move fluid, breathing exercises with a special device, etc….
After all the long hours we were just so tired and there was no time to update you all as all our strength went towards constant care for Sebastien. Thank you all for praying and thinking of him.
We are do happy that Grandma came to help with Genevieve, as it would have been impossible to keep up with all that has gone on over the last intense days.
Today Sebastien had a somewhat good day,he is being more himself,is allowed to eat and things are moving into the right direction.

Sebastien is out of surgery

mamarraine — Fri, 16 Dec 2011 23:52:23 +0000

Sebastien had an epidural for his operation for pain management as well to keep him from sitting up after surgery which he wanted to do immediately after he woke up… The surgery went well, he now has over 30 stitches on his little belly, and no tummy tuck, it wasn’t recommended for now. His surgery only took 5 hours and they had to separate his bowels from the stomach wall and only injured one little part.

We told him he had no more poop bag and the first words that came out of his mouth when he felt his side, was “Really? I can’t believe my eyes!” He’s so funny, he’s in very good spirits…
Despite being tired he still wants to sit up and during the next 24 hours and days to come we are praying for no infection,his first poop so his nasal tube can come out and he can eat some liquid food to start off.

Thank you all for praying and keeping him in your thoughts and prayers.

Sebastien is in surgery today at 9 a.m.

mamarraine — Fri, 16 Dec 2011 15:33:24 +0000

This morning at around 9:30 Sebastien went into the operating room for his surgery to close his stoma and possibly the surgeon Will also try to give him a little tummy tuck to help strengthen his tummy wall. He will be almost 12 hours in the OR and please keep him in your thoughts and prayers as well as all the doctors,nurses any care provider being there for him during the long surgery and after. With thanks the Forest Family.

Happy Birthday

mamarraine — Tue, 13 Dec 2011 03:28:31 +0000

Oh was Sebastien ever exited when he received from all of you some mail!

He was soooooooooooooo happy, thank you everyone for making his day so special and taking the time and effort to write to him. He truly appreciated it especially that he has now spent almost 2 months inside and was hoping that his surgery would be done by now. Thank you everyone for writing to him.

Dear Sebastien,

we wish you a truly Happy 7 th Birthday, to a boy with so much courage,

a boy with such a contagious smile it will make you forget all your worries,

a boy full of Love, Life & Hope.

We love you very much Sebastien!

We are so proud of you !

With Love

Papa & Mama

with your sister Genevieve xoxoxo

Click to view slideshow.

Here are a few pictures of how David and Me surprised early morning Sebastien for his birthday.

David and Me baked a cake the night before and as Sebastien is so in love lately with Mickey Mouse Clubhouse we decided to bake one for him at 11 p.m. at night( Mickey Mouse Clubhouse is an apple, the slide is a banana, not bad for David and Me I have to say , I think we finished around 2 a.m. decorating the cake, decorating our little table for the kids so that when Sebastien got up in the morning at 7 a.m. he would wake up to a little surprise.

Well, was he ever surprised and even Genevieve couldn’t believe her eyes, Sebastien was so happy about his cake and exited about the balloons that we put up on the 2 chairs. David and Me were just so busy looking at Sebastien’s face lighting up with so much Joy and Happiness when he saw his surprise of his little birthday party we created for him. We were all so happy that he was surprised that we didn’t notice Genevieve already starting to eat the cake with her hands.

Mmmmm cake for breakfast…… must have been Genevieve’s thoughts. We had a good laugh…

Sean Quigley – Little Drummer Boy‏

mamarraine — Sun, 04 Dec 2011 21:34:01 +0000

This video made me think of our sweet Sebastien how I see him one day all grown up, as he loves music, loves his faith, is so full of life, and will walk through the wonderful and lovely places in Winnipeg again one day.

What a wonderful video this is thanks to the talented Sean Quigley, a young teenager so talented and humble making a music video all by himself caring with his music the so profound message what the true meaning of Christmas is all about. Thank you Sean Quigley for making us focus on the true meaning again in this time before Christmas.

I showed it to Sebastien and Genevieve and both of them just love it and now sing this song at lunch time, taking a bath, doing dressing changes, etc. …. Music has always been such a big part in our journey with Sebastien and just has some wonderful healing touches in all of this medical world that he challenges each day.

Hospital stay – Limbo time – Real Deal

mamarraine — Sat, 03 Dec 2011 04:20:15 +0000

Click to view slideshow.

Here are a few pictures of the night before his surgery at the hospital as we were getting ready. He was so cute and he even wanted to record a video and i will try to upload it for you all to watch. Well, this was the practice round, so hope next time it will be the real deal.

In the video he is so cute eating away on his pasta Alfredo and we thought I would be posting it during the time he is in the operating room, but things change so quickly and our day turned out totally different. Well, despite all of our limbo that day I still thought it was a cute video and worth sharing with you.

Watch Sebastien how he uses chopsticks so naturally for pasta Alfredo?, makes us wonder how he actually learned it?

Gift Of Life & Sebastien’s Ostomy surgery

mamarraine — Thu, 01 Dec 2011 20:23:45 +0000

Yesterday Sebastien got all ready for his big day and a lot of preparation at the hospital was part of it. He also was so sweet and we recorded a little message just at supper time so that you all would be able to follow him on his journey through his Ostomy Closure. Thank you all for sending some wonderful thoughts and prayers his way as he was getting ready I read them to him to cheer him up and get him ready, thank you also Kim and the Mini TFO Team for making him smile and cheer him on with your wonderful video message, that was awesome. He truly appreciated all your thoughts and wishes and it gave him strength to face this big surgery.

Well, I totally pictured today different and trying to reserve all David’s energy and mine to be there for him after his big surgery as a long night with pain and discomfort was ahead of us after he comes out of this operating room. Well, this morning as we prepared him over the last few weeks very intensely with flushing his mucous fistula with Saline, breathing exercises to help with expanding his lungs after surgery, moving exercises of his legs and arms as he won’t be able to walk for some time, role playing that he will have a tube in his mouth and nose for some time so he isn’t in complete shock when he wakes up and pulls it out as he has done in the past and it is not nice to put it in, a garment was made that he will need to wear during the 8 weeks post surgery to help his stitches not to rip, and the list goes on and on…our nurse walks in Sebastien’s room and says the surgeon needs to speak to us urgently.

All those thoughts went through my head and I thought what could be possible wrong with our son that the surgeon needs to speak to us so urgently, usually that would mean something is not right with our son. So here we were, David arrived with little Genevieve at the hospital at 6 o’clock so they have a chance to be with Sebastien and give all their love to him for his big day, our nurse telling us to await the very important news from the surgeon in regards of Sebastien’s procedure.

Hours go by and finally we hear from our surgeon:

” I need to tell you that I have received a call for a GIFT OF LIFE for a liver /kidney transplant for 2 of our very sick patient and as you know this is a very time sensitive procedure as we will need to transplant this liver as soon as it arrives at the hospital. I want Sebastien to be ready as planned and if the liver arrives and after I examine it looks good to be transplanted I need to cancel Sebastien’s surgery so I can use the O.R. room and staff to help me with this life saving transplant. “

Me and David looked at each other and we both know how it feels waiting for this life saving call to receive a transplant for your child and how important that is to the recipient, a child who is dying if he or she doesn’t receive this life saving procedure. So it might sound weird but my focus started to become praying for the family that had lost this precious child and praying for their journey of grief and thanking them that they have made this Life Saving Decision to save another child by donating the organs as well as praying for the surgeons, staff, the 2 children that will receive the organs and their family to have strength for this long day, weeks to come and be comforted that their child has know a chance to live.

At 10 this morning our surgeon came and she told us that the liver is a go for the transplant and that she needs to cancel Sebastien’s surgery and I told her: ” My husband & I are very happy that you can do it and we will keep on praying for you and your team and the family! I know Sebastien will get his chance to be finally closed of his ostomy and we know deep down in our heart that your 2 sick patients need this so urgently!”

We explained to Sebastien that his surgery needs to be done on another day and that 2 other children really needed his surgeons help and he said he would pray for them and that it is ok. He looked a bit disappointed but we will do it in 2 weeks again on December 16.

Our nurse said : ” Sebastien is a lucky charm as this is already the 2nd time that we get a transplant call each time Sebastien gets admitted!”

Thank you all for praying and please keep those surgeon and nurses as well as the 2 families and their sick children in your thoughts and prayers and the family that has lost a beautiful and special child to be embraced by comfort and peace and healing.

The David Foster Foundation

mamarraine — Tue, 29 Nov 2011 03:29:05 +0000

www.davidfostermiracleconcert.com

A little while ago we received this invitation of the wonderful David Foster Foundation for this wonderful Charity Event.

Sebastien at about 2 1/2 years old was very fortunate to meet David Foster and his lovely family and spent some time playing with his lovely daughters. We had prepared a little scrapbook to thank David Foster and his family for being such an Angel and supporting our long journey away from home. I still remember Sebastien sitting and rolling little balls back and forth to his kids. During this private function for a few families from the hospital I will never forget how nervous I was as I just wanted to thank him and his wonderful Foundation for taking the courage to support families like us during this most difficult times so that my husband could come and see us and be with us and be at my side during the most difficult moments that we had to challenge with our son. What struck me the most was when David Foster welcomed all the families and said: ” I am here today with my little family and I want my family to meet you all, experience and learn what difficulties you face each day you wake up here at Sick Kids, the long days, the worries, I want my children to understand that when life is just so difficult due to health issues of a young child, we who are doing well and healthy NEED to be there to give a helping hand. We need to help those families to be still a family when their child gets better, we need to help them keep their home so when they are done their treatments they can return to a home that was theirs before the left for those treatments. We need to help!”

In the video you will see the last years Event in Toronto where they raised 3 Million Dollars to help families in need. Right after the video is done just click the x on the bottom right of the video and you will get to the official Site and each few second there will be a picture of a family and voila also Sebastien will be there with us smiling from his hospital bed as he was just a few days after his major surgery and me, the day before our sweet Genevieve was born. Enjoy!

Ho! Ho! Ho! Santa Claus is coming to town….

mamarraine — Mon, 28 Nov 2011 03:25:22 +0000

A Special Message from Santa for Sebastien

So Magical and Special

Thanks to a very special Elf from Winnipeg, Sebastien received a wonderful surprise and was he ever amazed and couldn’t believe his eyes. Thank you so much special Elf from Winnipeg, you made his day!

Special Message from Santa for Sebastien

Happy 7th Birthday & 12 hour surgery December 1

mamarraine — Sat, 26 Nov 2011 17:06:46 +0000

I was told I would never walk – but never told I would ever run, hip -hop or jump

I was told I would never eat – but I learned to cheat and eat like Mom & Dad

I was told I would not be able to write – but I love to draw detailed art for hours

I was told I would not be able to speak - but I love to sing & speak French-English and

German

I was told I wouldn’t be able to try – but I now learned how to fly

I was told I wouldn’t live – but I fought to live and now I’ m full of energy & life

Giving thanks to God and all of you who have been there for me throughout my

journey

Sebastien & Family xoxox

Sebastien will be turning 7 on December 12 and what would a 7 year old boy dream of for his birthday presents?

Sebastien is dreaming of healing and part of this is his surgery that will help him to reverse his Ostomy on his body and connect the bowels that are apart since his birth, close his G-tube that he needed to have to feed him during the years that he needed to learn how to eat. We had asked Sebastien if he still wanted that surgery on December 1st as he would be at the hospital for his birthday as he has to heal from his major incision, not able to eat his birthday cake as he will have his bowel take a rest for the first little while so it can heal, that he will be in pain, intubated and not able to walk for a while and and that is what he told us: ” Mam & Papa, having my Ostomy gone is one of my best birthday gifts so I can go swimming in the summer ! And when I am better we can have a Birthday & Bye Bye Ostomy Party with cake!”

He is so cute and always looks at the positive side of Life

As this surgery is very long and we needed someone to look after Genevieve so we could concentrate on Sebastien to be at his bedside and be there for him we were offered by a wonderful friend from Winnipeg to come down to be with Genevieve, what a relief that simple thought that was that our little Genevieve will be with someone we trust. Genevieve would feel so much more comfortable just staying at home and keeping her regular routine playing away with her toys.

Unfortunately the surgery was scheduled November 3rd and had to be cancelled due to Sebastien struggling with Pneumonia and our dear friend wasn’t able to come no more for December 1st due to her work schedule & school but despite all thank you again our dear friend of trying, that was just so wonderful of you to offer your help in such a practical way!

Well, so we called Grandma for help and rescue and sweet Grandma always there to help is coming to our rescue as we realize we can’t do it ourselves. We told Sebastien that Grandma will be coming to help out during his major surgery and as we looked at him his face lit up and tears are rolling down his cheek : ” Mama & Papa that is the best birthday present ever – Thank you so much – I can’t believe it, she is coming ,I miss them so much! I can’t wait & we could put a bow on her so she is My birthday present “

Well, other kids for their birthday wish for presents – Sebastien wishes for his Ostomy to be removed and for his Grandma & Grandpa to be there!

Thank you also Grandma & Grandpa for always being there for Sebastien and us and never thinking of yourself, always giving us a helping hand, always journeying with us during the complex surgeries, the skype calls to cheer him up, the laughter’s you bring to Sebastien and his most favorite puppet shows of yours

I thought it would be nice if during his hospital stay he could receive some “Cheer me up letters or cards ” so for those who would like to sent him a little hello and Happy Birthday this is his address.

702-40 Gerrard St. E., Toronto, Ontario M5B 2E8