we've had a very overwhelming couple of days.
Ford wasn't ready for extubation on saturday, but on sunday they decided he was as good as he was going to get and so we went for a "trial" extubation. it went well initially and all were encouraged. they even restarted feeds sooner than usual, because he seemed to be handling it so well.
but after 4 hours, he very quickly stopped handling it well. respiratory wise, it went great, but it became apparent that his heart was failing under the stress. they did an echo and reintubated.
the whole reintubation process was a mess. we were asked to leave the room and it was 5 hours before we could go back. in that time they did manage to reintubate him, but Ford accidentally self-extubated himself and so they intubated again. then they wrestled with trying to get some new IV access started (his central line was leaking and had to come out sunday morning). after several failed attempts they eventually started a new central line in his jugular vein, which they were trying to avoid, as it interferes with his Glenn circulation.
meanwhile, Dr. Human came to talk to us about how serious the poor function of his heart was during this trial.
long story short, this is the point where Ford can't continue on the modification path. this is the point where transplant is the only option for keeping him alive.
but before we can list for a transplant, he has to be assessed for a transplant.
things are happening fast and there is a lot for us to figure out. but we will be going to Toronto, not back to Edmonton, for Ford's transplant and will be leaving for Toronto within a week.
ADVERTISTMENT: looking for a place to stay in Vancouver? we are seeking someone to house-sit/sublet 3 bedroom apartment near commercial drive. it comes with a cat. 3-6 month term.
so the first is the step assessment, then we list for a transplant, then we wait.
Ford will have to remain intubated while waiting for a new heart, which sucks. he will be second-priority on the wait list - kids on mechanical heart support are first.
i can't write much more than that now, though i'm sure you have lots of questions. we'll do our best to keep you updated in the coming days.
Toronto friends - we are, at least, and despite, looking forward to seeing you.
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Ford's birth marked a beginning of a great journey for your family... and now that journey is taking you on a new path. You have no choice but to follow it wherever it leads -- with love, strength, courage and the knowledge that you are doing everything you can for your son. My thoughts and prayers are with all of you.
ReplyDeleteAll our love to you as you undertake the cross-country journey. We send our prayers and love, strength and hope.
ReplyDeleteI am thinking about you all, especially sweet Ford. If there is anything you need please let me know. Much Love, L.
ReplyDeleteYou are in my heart Christa and Nick. I think about you both and Ford often and will continue to hold you all in the light as you prepare for this next step.
ReplyDeleteAll my Love, Jennifer-Lee
OMGosh - as you 2 have prob. said many times.
ReplyDeleteBut - going to great care - which is priority!
Sounded like Van. was stumped?!
I shall ask my sons if they know of a good person for you apt.....and cat!
All the very, very best!
Strong upper lip and all that!
'HUGE hugs!
Patti & Glenn
Ah you guys....I am so sorry this is the path Ford and you are on. Sending much love, light and encouragement to you all. <3
ReplyDeleteAmanda
HI Nick & Christa,
ReplyDeleteI posted this to eldest son Gord, who is looking for an apartment for he and another friend. I agree with the earlier comment - he's going into the best possible hands in this country, possibly the world. If you need any help with Toronto accommodation, let me know, I have family there: nieces and nephews your age living downtown.
Keep strong and know you are all amazing.
Much love to all of you,
Becca