mr h as we call him in our family is back at home settled in to his daily routine having survived that whirlwind tour of washington dc
he is just chllin in the pictures we saw of him
i think his pleasant disposition will get him through all of this
when i went with him and his parents to see the folks in the nephrology transplant clinic they said you know i think we need to consider giving him growth hormone shots every day
oh no i thought not another shot
so in my head i think ok lets see he takes a vitamin d derivative sodium bicarb sodium chloride ie salt an antibiotic a steroid pill to help him retain sodium and decrease his potassium
some of these are given more than once a day
at least he was able to stop his blood pressure medicine and his medicine to remove the potassium that can build up in his body
he also gets a shot of epigen a hormone made by the kidney that stimulates red cell production
its also given to chemo patients and its the one that lance armstrong and the bicyclists used to increase their red cells in the body
he gets that shot every 10 days in the muscle in the thigh
i havent had to give that one to him yet thank goodness
now that he has started eating food you have to watch what he eats
foods high in potassium he has to avoid like eg spinach
he cant have too much protein since that will build up urea nitrogen in his blood
but he needs some protein to grow
its a fine line
luckily he is still getting a lot of calories from breast milk which moms body seems to just know how to get things right for him
now back to the growth hormone
he makes enough growth hormone
its just that his body is resistant to the growth hormone so that he needs to be given more to overcome this growth hormone resistance
getting the additional growth hormone will allow him to stay on the growth charts and not drop off
well
here comes the prior approval process that we all hate when it comes to insurance companies
this has to be prior approved
or
as we use to say in the medical field
prior disapproval
little did the insurance company know that if this didnt get approved there would be a big outcry over not approving mr hudsons growth hormone shot
can you imagine the bad press that that company would get on the national news
little hudson that was at the national kidney health care signing at the white house cant get approval for his growth hormone shot so he can grow
remember
mr h has to get to a certain weight before he can get transplanted
the growth hormone is an important part of getting him there
the less time he has to be on peritoneal dialysis the better it is for his little body long term
yes
it did get approved finally
he now has had 5 shots
sadly to say for his granddaddy and grandmother i had to give one of them to him
im not sure who it hurt the most him or us
but
a few mintes later he was sitting up playing with his toys for a hour
i sure hope he doesnt hold this against me
no my wife she didnt give the shot i did
but she cried some maybe more than mr h did
when asked if i would mind doing the shot i said no ill do it
ive had to do more uncomfortable things to kids in my practice before like spinal taps arterial sticks venous access lines bladder taps catheterizations suturing etc
this shot thing wont be bad i thought
well this one bothered me more i think
he gets it each evening before bedtime in the fatty part of the upper arm upper thigh or upper buttocks
so far except for the pain of injection he has had no side effects
just
i must add the effects on his grandparents
now
mr hudson
hes not stupid
even though he is just 11 months old
he knows when its time to get it
he gets laid down on his back
two adults are in the room
one to hold him still
the other to jab him with that dart thing
i looked up the price if you paid cash for it
noting that the internet seems to try to hide the price
as near as i can tell if you had to pay cash for his dose
it would be around $670 a month or $8000 a year
luckily for them they have good insurance
their out of pocket may turn out to be about $100 a month
they hope
mr h has the potential to approach the height he would normally have been
not quite that tall but an adequate height
its the same height that my three brothers reached in their adulthood
once he gets transplanted he will be on two drugs that he will take forever to keep his body from rejecting the new kidney
thats why this first kidney is so important
you want the best match possible so that it will last longer
there are several people getting worked up now to be his donor
including his mom
the best match will probably be used
one of the first criteria is that the donor cant be too big since the kidney has to fit into his little body
most if not all of the other meds he is on now including the other shot will be discontinued when he gets transplanted
maybe even the growth hormone shot but i can see them possibly continuing that one also to get maximum adult height for him
so
mr h is getting closer to get his transplant
hopefully that growth hormone shot will get him there quicker
as i say when people ask about him
i say
hes just so dang cute
the organicgreen doctor
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