he rides his little tricycle with the handle that we push him with
his little feet cant quite reach the pedals but he can grab a hold of the handlebars
this is near his great grandmothers apartment
along the route he has two spots he likes to stop at
this little library
the other is an aviary in the courtyard of a nearby hotel
he loves the birds
on this day he chose a book on dinosaurs
later he and his grandmother my wife she will replace the book with another one
you know
its a pay it forward library
we got the word that its almost time for mr h to get his new kidney
it may be within 90 days
on his last labs 3 weeks ago
his bun (blood urea nitrogen) is 55 it should be way below 20
his creatinine is 6.5 it should be below 1.0
basically
he is outgrowing his kidneys
they cant keep up with his growth
hopefully his numbers dont worsen before he gets transplanted
if they do he will have to start dialysis at home each night
but
if he has to do it he has to do it
the hope is he wont have to do home dialysis
he has a little over a half a pound to gain to qualify
he may reach that weight this month
he has labs coming up this month
those bun and creatinine numbers will continue to climb
its the bun that makes him feel bad
i googled symptoms of chronic renal failure
an adult can tell you
a 17 month old cant
fatigue lost of appetite maybe edema too much urine or not enough urine
he has a decreased appetite but takes a med called periactin that stimulates his appetite
he mostly though is an active toddler
there is no edema or swelling that i can see
he pees ok it seems
but when i look at him sometimes i think i know he doesnt feel good at times
he just to me doesnt show it
his best matching donor is ready
we are so lucky and blessed that she and i must add others have stepped forward to make this life saving donation
there are special places for people who do this
one is in our hearts
if he were to get transplanted in lets say 90 days
there would be
90 more growth hormone shots
9 more epigen shots to stimulate his bone marrow
270 more doses of his sodium chloride thats salt and his bicarbonate
90 more doses of his antibiotic
90 more calcium meds
90 more doses of his periactin
when he recovers from his transplant all those will probably go away
then he will take probably twice a day two antirejection meds for the rest of his life
lucky for him this transplant team doesnt use long term steroids
he will have to have probably a gtube put into place for awhile to keep his adult kidney hydrated
usually this gtube is removed later
he will not have to have any bladder or ureter surgery
they may or may not have to remove his right kidney to make room for the adult kidney
they know the size of the kidney so they have a good idea of what they need to do
but
will not really know until the transplant is done
he will be in the hospital for a week or two
he has to remain close to the hospital for almost a month
we are trying to get ready but its hard to do
to get ready
so my wife she and i
we have opened our schedule
tell us where we are needed and what we can do to help
we will be there when the time comes
yesterday when i copied and pasted that picture above i stopped for awhile
just to take it all in
i was the one that took the picture the same morning we heard they were about to set a date
i feel now like i did that day
sad
but happy
knowing that we are so near to making his life better
i also know looking at that picture and looking at him that day enjoying that book
i know that i wont be there for him when he is a teenager
so
i have to be there for him now while i can be around
yep
mr hudson
its almost time
lets go for it
the organicgreen doctor
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