1. if you pull out of your driveway in st thomas at 4:48am, you will pull into your beautiful parking spot near the elevators on P1 at SickKids in toronto at 6:58am. and you will be half an hour early for bloodwork.
2. if you pull into the drive-thru at timmy's at 4:53am, you are too early for a breakfast sandwich, so you have to get a bagel with cream cheese instead. ah, well, it served its purpose.
3. shoppers drug mart at sick kids does not, in fact, open at 7am.
4. asher is a little too well-known at sick kids. the clinic nurse today actually said to me, "i don't really need to teach you anything, do i? you've been through this all so many times before. if they gave out frequent flyer points here, you'd have tons!" yeah.
5. i look fantasic. LOL i saw the research nurse who followed asher during the last few months of the enalapril study back in the day. last time she saw me, i was fat, crazy/depressed, my hair was longer and blond, and now i'm none of the above. LOL
6. i heart medical research. yes, i signed asher up for two more studies, to be done in the OR prior to bypass and in the two days following surgery.
7. the surgical fellow has a great sense of humour. he liked my idea of sending asher to live with the surgeon for a week and then decide if the fontan is a good idea. more oxygen = more energy. nuff said.
8. i could have done the informed consent bit myself. stroke, heart attack, death, bleeding, chylothorax, etc... yup, i knew them all, including what causes them, and what to do about them.
9. legally, the surgical fellow has to go through the informed consent bit with me.
10. asher doesn't smoke, nor is he pregnant, but he does have heart disease. (if you've filled out the questionnaire for anaesthesia, you're laughing, i know.)
11. when the surgeon says that he'll be there at 11:30, he really means that he'll have to be paged at 4:15.
12. being low on T-cells is not the same as being immunodeficient or immunocompromised, but still needs to be treated as though it is the same. because if you're T-cell deficient, you need irradiated blood products. but if you're just low on T-cells, you're not T-cell deficient, but you still need irradiated blood products, and a follow-up with immunology. even though you're not immunodeficient, just lacking some T-cells. WHAT?!?!?!?!?!?!?!
13. i don't understand immunology. (ok, so this wasn't a new lesson i learned today, but it was most definitely reinforced for me today. CAN ANYONE EXPLAIN IMMUNO TO ME?!?!?!?!?!?!?!?! GAH!!!!!!!!!!!)
14. nothing beats a 9 cent venti chai latte. except, perhaps, an 8 cent venti chai latte.
15. and especially except a lunch of carbs, gravy, salt, deep-fried trans-fats, and hot dogs. mmm... lunch....
16. asher has more energy than anyone i know.
17. the surgeon is not keen on taking asher for a week. hmm, wonder why???
18. the word "routine" can be used to describe asher's heart stuff!!!!! can you believe it?!?! "this should just be a routine fontan." i have tears in my eyes just remembering dr c saying that.
19. asher, the ham, who lives to perform... will not perform on cue. he's been looking forward for days to telling dr c that "i not hab tube anymore" and when dr c walked in the room, asher did his "hmph" and wouldn't look at him. but he did pick his nose. asher, that is, not dr c.
20. that when you're sitting in clinic, 8 days before the final stage... nothing else matters. the realization that this is actually happening is heartbreaking, terrifying, thrilling, nauseating, and leaves you not knowing whether you want to cry or vomit. or maybe both. so who cares about all those stupid, meaningless, non-fontan questions you have. they don't matter. what matters is that in one week, you're handing over your baby to someone you've only met a handful of times, and he's going to do disgusting things to the only non-redundant organ in your baby's body, with no room for error. and you're going to sit down the hall all day and wait for the surgeon to come back early, but praying to God he takes all day. and that now, even more than ever before, the clock is ticking, time is running out... and all you want to do is hold your baby and watch him and cherish every breath and memorize everything, learn every freckle and ticklish spot, and beg God that you never forget, just in case...........
21. if you pay for parking at 4:48pm, you will turn onto the street 5 minutes later. and you will arrive in hamilton at 8:31pm.
yeah. long day. ugh.
but thanks for being there, diane. you helped more than you know. :)
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3 comments:
#18 is my favourite <3
It is great that you can actually find humor in going through all of this! I loved and agree with all your lessons.
It is SO true, all of it! At the end of the day, all which you were told has NO meaning and flies in one ear and out the other. The only thing you hear is open heart surgery!! Good luck knnow that someone in Wisconsin USA is praying for a safe uncomplicated day!
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