Nick had a checkup this morning with the kidney specialist at Children’s
Hospital. Nick’s kidney function looks to be settling down...finally. The kidney
doctor gave us a lot of very good information today about why the kidney
problems only seemed to show up recently, as well as a possible answer to Nick’s
balance issues.
The kidney problems have been there since Nick had the chemotherapy for the
liver cancer 16 1/2 years ago. We have suspected there were problems, but each
time a problem cropped up, it would go away almost as quickly.
The doctor said today that the tests that were done six months ago and the
lab work in between all indicate that the kidney problems are not a new issue.
It’s actually a long term issue that is now to the point of needing treatment.
The reason it’s just now showing up is because the kidneys have four basic
levels of function. Once the injury to the kidneys takes place, the levels of
function immediately begins to decrease. The more injuries that happen (from
toxic medication in Nick’s case), the more layers of function that are affected.
The human body has many ways that it makes up for the loss of function, until it
gets to the point that medication is needed to supplement. That’s basically what
happened back in the winter with Nick’s blood pressure issues. It was a symptom
that the kidneys were no longer able to handle the toxins.
The DMSA scan Nick had in February was to see how much scarring there was
in the kidneys. The doctor said today that it wasn’t a question of if there was
scarring. It was how much scarring. Nick’s kidney’s are functioning at 60% on
one side and 40% on the other. It’s not terrible by any means. One side
obviously has more scarring than the other.
With that in mind, the goal now is to protect the kidney function Nick has
left. The medication that the kidney doctor put Nick on several months ago to
treat the blood pressure issue is actually being used to kind of pump up the
kidneys and support their functions. The doctor told us today that Nick will not
ever be able to come off of this type of medication. It has officially been
added to Nick’s maintenance medications. This particular medication is most
effective in protecting kidney function in diabetic patients. The success rate
for someone with Nick’s particular health issues is not nearly as high, but as
the doctor said, “We will take what we can get.”
I asked if any of the kidney issues or medication could cause balance
problems. He said actually it all can. It’s a combination of the medication and
dehydration. He advised Nick to add 12 ounces of fluid –preferably no calorie
Gatorade- very first thing in the morning. It makes a lot of sense to me,
especially since Nick can dehydrate very quickly and without any real warning.
So, we are going to try this and see if it helps.
Today was very eye-opening for me. I knew Nick’s kidneys were fragile, but
I didn’t realize exactly how fragile. If Nick ever has another massive infection
like the one he had in 2005 that requires major IV antibiotics, he WILL go into
kidney failure again. The doctor said today that is the only guarantee he will
give me about Nick. This saddens me, but it also helps me to be a better
advocate for Nick. I know that the kidney doctor needs to be on call when
something has the potential to go haywire...along with the other that are
already in that group.
The doctor also said today that he will continue to monitor Nick from a
distance, meaning he’ll keep an eye on the different labs that are done and
blood pressure that is recorded each time Nick is in clinic for chemo.
That is very reassuring.
I hope all of this is somewhat clear.
Overall, it was a very good checkup with what I consider good news. Huge
praises for answered prayers!!
Thank you for covering us in prayer. It was very nice to go into
Children’s, see the doctor, get good news, and leave all within a couple hours!
We go back to see the kidney doctor in 6 months.
We go in for chemo and IVIG next week.
Working to remain...
In HIS Grip,
Kristy Baxley
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