he loves to dig in the soil
he loves being outside
i think he must have gotten the gardening gene from me
mr h has chronic kidney failure or chronic kidney disease
he was born with an obstruction that permanently damaged most of his kidneys
the obstruction was easily opened up just after he was born
but
the damage was done
as he ages his body as it grows outgrows his kidneys ability to keep up with the growth
when they fail to a certain level it is time for a kidney transplant
if he can get to a large enough size
if they fail too far before transplant he will go on peritoneal dialysis until he is transplanted
he would then do home dialysis from a tube in his belly each night
right now his renal function measured as creatinine for those in the medical field is at around 5.9
when that goes higher and his bun climbs higher the decision will be made to do the transplant if he is big enough or if not he will start the dialysis
the thinking is he might have to have peritoneal dialysis for a short time before he is transplanted
his regimen now is that he gets daily doses of an antibiotic a saline solution a sodium bicarb solution calcium supplement an appetite stimulant called periactin an old antihistamine that has that as its side effect a daily shot of growth hormone a weekly shot of epigen to stimulate his bone marrow to make red cells
one of the hardest things is when i have to hold him down and give that growth hormone shot
he just looks at you with those sad eyes since he knows whats coming
after the shot and he has whimpered some
he just sits up and takes off playing again
he is 15 months old and weighs around 21 lbs and needs to gain over another pound or two to qualify for the kidney transplant
his little tummy has to be big enough to get the smallest adult kidney with the best match thats available
he has been on the national donor list for over a year now and it can to take over 2 years to get a kidney that way
or
you can get a live donor
he has at least 3 donors that have stepped forward
there may be more but due to hipaa laws the transplant team cant give us much info on them unless the donor contacts mom and dad themselves
sometimes laws are a little crazy
so what they are looking for is the best matched donor for a toddler
since this kidney is the most important one that he will receive
right now he doesnt have the antibodies against donors that he will have after this one is done
so
the best donor may not be his mother but might be one of the other donors
the goal of the transplant team is to have the mother held back in reservoir
as
sometimes the kidney doesnt take or something else happens and a second kidney needs to be used
otherwise he would be on dialysis until a second kidney is found
so
they like to be prepared for all possibilities
plus
they know that he will always have that second kidney waiting for him into the future
a live kidney with a good match in a toddler like mr h has the potential to last 15-20 years
a donor kidney from a deceased person may only last 10-15 years
we are all hoping for new technologies in the future like growing your own kidneys from your stems cells technology to be developed etc
if you look back 20 years ago kids like mr h were sent home on hospice
now look where we are
he has the potential to live a long healthy life
after transplant he will be on 2 transplant medications forever and get eat a regular diet and do whatever he wants to except play football rugby and other activities that can damage that transplanted kidney
interesting enough the ok activities include baseball basketball soccer etc
we recently went to have a renal scan done which was traumatic for him since it was for some reason hard to get iv access to inject the scan material
it showed his kidneys to be functioning at about 50% with the left one being the best one if you can call it the best one
next
he had a test where he was put to sleep and his complete kidney ureter bladder were evaluated
commonly these kids have to have one or both kidneys removed as well as the ureters and have to have bladder surgery done
finally some good news he no longer has reflux into his ureters which sets him up for infection and his bladder doesnt have the permanent damage that these kids usually have
so
no kidney or ureter or bladder surgery will be necessary
next
have you ever sat in an exam room for 4 hours with an active 15 month old
we did
he saw the transplant coordinator the nurse coordinator the social worker the nutritionist the pediatric urologist the pediatric nephrologist the transplant surgeon all at different times
here is what was decided
one of the non mother donors may be the donor
mom will be held back for transplant two whenever that occurs
note thats a biggie for someone needing a transplant as they age the waiting list for a nonlive donor gets longer and longer
in adults it can be 10 years
he will probably be transplanted later this year
when he needs it will happen suddenly as apparently kids have a lot of reserve unlike adults so that they do real good then they get worse real fast
so everything needs to be ready to go soon
he will have to have a pic line put in his upper shoulder area to have access for blood draws and ivs
this will happen near transplant time
he will have a g tube site placed on his tummy so he can get the larger amount of fluids he will have to take in each day
remember he has to hydrate this new adult kidney at adult fluid levels until it adjusts to his little body
eventually that g site will be closed
all of the donors are being processed now and should be completed soon
they will be lined up according to who is the best possible donor
if its mom it will be mom although they really want her saved as a standby
he will remain on his restricted diet and all the meds and all the shots he is getting now until the transplant is done
after transplant his medication management will get better
just two pills twice a day to prevent rejection
and
no more shots
we were looking at one or two surgeries to remove a kidney and ureter and do bladder repair
this would have also put him on dialysis
that is not going to have to be done
if you pick him up he looks like a normal 15 month old who if he knows you will hug you and smile at you and cuddle with you
he is a very active 15 month older who is about to take off walking and talking
he loves to explore the world
so
we are in this holding pattern
trying to fatten him up
he is still on breast milk from mom since it is the best formula for renal failure
he also takes it with a special renal formula that helps to give him more calories each day
he has frequent lab draws each month to watch his blood counts his sodium his potassium his kidney function ie his bun and creatinine his pth or parathyroid hormone his uric acid his bicarbonate level his calcium level iron level and a few others im forgetting
he just seems to take it in stride
he loves his stuffed doggy and really loves his sister ms b and his mommy and daddy
he likes my wife she and i also as well as his other grandparents
so
now its just waiting until its time
he and we are ready
here is hudsons facebook page
a kidney for hudson
the organicgreen doctor
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