As you all know, Nicolas had a liver transplant on Nov.21. The surgery was lengthy, without complications and also included a reconstruction of the portal vein (using a piece of Nic's jugular vein). Now Nicolas has a portion of his dad's left liver lobe, which will develop over 6 weeks to a size which his body requires. Sebastian's liver will also grow back to it's needed size. The surgery took place on the eve of Nicolas' 12th birthday, you could say that both his parents gave birth to him...
Nicolas spent the first few days in ICU, he arrived with all the many lines that are necessary for surgery. He was wide awake on the morning of the 22nd and was so frustrated because he couldn't talk. Luckily the first thing to be removed was the ventilator tube, but at first he tried to communicate by writing. I have told him for years to work on improving his handwriting, with
the added effects of the drugs, it was incomprehensible.
My little guy was hooked up to monitors, but within short order he was trying his hand at the laptop. His biggest challenge was not being allowed to eat or drink for the next 5 days! For the first 2 days he was in agony, begging me for food and drink. Nicolas has never had a great appetite in his life, it was almost refreshing to hear him crying out for food. All he could have was small amounts of ice chips. Nicolas would not be given food for 5 days. This was in
order to wait for his bowels and the new veins to heal.
Nicolas' liver surgeon, Dr. Kato, is a careful, considerate, conservative and caring man. He came each day to see him, and continues to monitor everything very closely. All the surgeons, physicians, RNs and external team members from liver, bone marrow and oncology follow Nicolas meticulously. One of the hardest jobs I have is to keep the teams straight. In ICU Nicolas had a visit from dad, who arrived from the adult side of the hospital in a wheel chair. Sebastian was feeling quite wiped, and he spent most of his time on his own, sleeping. He was happy to just keep to himself, the nursing care was good but he hated the constant beeping and intrusions from doctors and nurses.
That said, we have nothing but praise for both hospital and for all the people who have worked with Nic.
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Thank you Kathrin - it's great to hear this upbeat update! You're doing a great job, managing and encouraging everyone. Beautiful work!
ReplyDeletexoLori
Thank you for your post-surgery update. May you all get the food and rest necessary for continued sustenance! (and thank goodness for OHIP coming through; hopefully the Canadian government will soon redeem itself too!)
ReplyDeletelove, Gisèle
Hi Kathrin, Sebastian & Nic,
ReplyDeleteI am so happy that things have gone so well. My Gosh-it has not been easy for you! Your blog is wonderful and a great way to hear how things are going. I am thinking of you all the time and hope that this life changing event will bring lots of happiness in the future. Love Jocelyn
Dear Kathrin, Sebastian and Nicolas,
ReplyDeleteSo glad this first hurdle is over. I hope Nicolas is allowed to eat what he wants now - nothing like denying a fussy eater his favourite foods!
Thanks for the updates, and we hope you find some time and the energy to see a bit of NY.
We wish your boys a speedy recovery and think of you often!
xoxoxox
Karen and the boyz
You guys are unbelievable.... so glad to hear that the spano men are recuperating and the best MOM around is holding the fort with fearlessness and strength- thank you for the update-may the walk be downhill and full of new joys for all of you everyday as everyone heals and gets stronger- sending lots of love, xo sarah
ReplyDeleteSuch an incredible story. You people take family-bonding to a whole new level.
ReplyDeleteBut most importantly, Happy Birthday, Nic.
- Nico K.