We are approaching the end of month 3 on
dialysis. (You would think by now I would have the spelling down... D I A L Y S
I S. Really, try it… not so easy). I’m in such a hurry all the time
these days that every time I type that word, spell check stops me in my tracks.
Another divine smack to: slow down and hush the rush.
What was initially overwhelming,
unfamiliar and destabilizing, feels more comfortable and routine. I pick
up Jack from school at 1:45 on Tuesdays, we stop for a latte and treat at Dunn
Bros, and then haul our 3 backpacks filled with gummy bears, animal crackers,
games, books, school work, laptop, bills, and just the usual mess of papers on
my desk.
Harry (Dad) has a similar routine on
Thursdays but occasionally inserts a conference call into his drive from the
school to the hospital and cracks down on homework. We typically arrive
home with glazed eyes and tight hips around 7:30pm and are greeted by a meal
that has been prepared by a family friend. Grateful.
The 20-minute backpack unloading session
begins, lunchboxes get emptied, meds get prepped, feeding pump gets loaded,
growth hormone injection gets prepped, and search parties ensue for snow gear
and library books that have gone MIA. While backpacks and lunches begin
to get re-loaded for the next day, Jack gets wrapped in saran wrap for his
shower. Sam and Lucy jockey for their own position in the bathroom. Bedtime
negotiations and stalling tactics begin, patience levels get tested, we say
prayers, and then lights out. Whew!
The week is such a dance but we have a
good rhythm right now. Everyone is healthy and we continue to have a massive
stream of support and light shining on our family.
On Saturdays, the wondrous and brave
first-graders are now taking Jack to dialysis. (I know...can you believe that?
Sniff Sniff.) Escorted by their parents, these classmates are bringing the fun
and and an opportunity for mom and dad to focus on Sam and Lucy. This has
been enormously, fantastically, awesome for all of us.
No news yet on a kidney. The office
has some interesting possibilities I hear and many people to still consider.
Patience, patience, patience. THE GOOD NEWS…. it is looking
like Jack will NOT need a nephrectomy (kidney removal) prior to transplant! His
doc had prepped us for this possible scenario as he had such an enormous amount
of protein dumping in his urine. If dialysis didn’t shut that protein
leak off, there was no way his body would receive the next kidney. This surgery
was also very complicated and more difficult than a transplant surgery.
Fortunately, dialysis is making big improvements for him in this department and
we are hoping to go right to transplant when it is time.
The other update to share is that Jack has
started daily growth hormone injections. My little man has not grown a smidge
in 18 mos! If you miss a growth spurt, you can't make it up later on.
Additionally, kidneys do not like growth hormones so we have not had the
opportunity to use these meds until now. (I suppose the blessing of a
kidney that is already unhappy). So, we are seizing this moment to try to
help him grow. It takes 3 - 6 months for these meds to have an effect and
they will be discontinued once once he has a new kidney. If you see my
child wearing "floods" (trousers too short), please give him a
"high five". It's about time this boy's outer body catches up
to his inner body brightness.
Thank you EVERYONE for making an indelible
imprint in our hearts. While this is challenging time, I welcome the full
spectrum of life experience. For me, this is is the point of life... to live
fully.
Love + Gratitude,
Ali
P.S. - Save the date and stay tuned
for more details: April 13 @ 1pm
to "Give, Live, Love". This will be a family friendly yoga event
hosted by my friends, Nan + Jes, founders of Gorilla Yogis.
This will be a donation based yoga class to raise awareness for organ donation
and support Jack's journey. Details TBA here.
LASTLY, here is a little video that
my friends, Mary O'Brien and Kelsey Anderson, created. It's a
glimpse into our world at the hospital.
https://www.youtube.com/watch?v=lVKVHvQJl84&hd=1
Follow our journey here @ https://www.facebook.com/JackCertainKidney
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