The Kidney Stone Saga Continues ....
We were back down to Phoenix Children's today for another procedure under anesthesia to have the stent removed. The urologist said that the KUB (x-ray of the kidney, ureters & bladder) showed that there are still some small pieces of stone remaining in the kidney AND as a result of causing a hole in the kidney (either from when the neph tube was place or during the surgery to break up and remove the stone) pieces of stone leaked out and now there are pieces of stone in Jack's peritoneal cavity. Based on an article I read: "Extravasation of irrigation fluid during percutaneous nephrostolithotomy is a major complication that can result in severe morbidity." Fortunately, as of now - Jack seems to be okay with these pieces of stone floating around his insides. The urologist said they shouldn't cause him problems - or pain. He also said he doesn't even know how he'd remove them, as he's never encountered this before. The urologist also doesn't think that the small pieces of stone remaining in the kidney will cause him pain. I guess that remains to be seen. It's times like this that Jack's inability to communicate and express how he feels makes it really, really difficult - for him ... and for me.
The plan is to have a repeat KUB in 6 weeks and if there are still pieces of stone in the kidney, the urologist will do another lithotripsy to try and break them up more.
As for the composition of the stone, it was determined to be "carbonate apetite". I got on PubMed to see what I could find out about stones with this composition and found a recent article that discussed the composition of kidney stones in patients with musculoskeletal anomalies - which includes individuals with muscular dystrophy. I could only get the abstract on PubMed, so I emailed one of the authors and he sent me a copy of the complete article. On a side note - I sent an email on Saturday night, received a response from the doctor who co-authored the article on Sunday morning and first thing Monday morning - I had a copy of the full article along with another article the doctor thought might be relevant and of interest. How cool is that? Just another example of a doctor who cares!
Based on the article, kidney stones in individuals like Jack - individuals who are unable to move - were once thought to be caused by infection, but now they are finding that many are of metabolic etiology - possibly due to high urinary pH. I was initially told that Jack's type of kidney stone was likely caused by infection. However, after removing the stone, the urologist said that it didn't look like it was due to infection. So, Jack's is likely a metabolic stone. They are now testing his urine and we should know more in a few days. Problem is, according to the urologist, the treatments they have used to lower urinary pH have serious side effects.
There you have it - more than you ever wanted to know about my kid's kidney stones! :)
And in the meantime - we will continue to do what we do best .........
Keep calm and carry on!
(okay, the keeping calm part might be a bit of a stretch.)
5 comments:
The only comments coming to mind at the moment are naughty ones. But I'm stifling those and just hoping you find a sunset or caring friend or soothing bottle to find comfort in today. That is pretty amazing about the author/doctor. I never would have thought to try that route. You are amazing. Peace to you.
Oh my! I have had kidney stones since I was 15 years old (I'm 31 now). Mine form because I had 95% of my bowel removed when I was a few days old. This resulted in short bowel syndrome and my body is unable to absorb nutrients. I had lithotripsy and stents put in last week so I feel your and your son's pain. They are horrible. But enough about me, I am wondering if he could be a candidate for a medication that has really helped me the past year my new doctor prescribed, my first dr. whom is a renowned specialist said there was nothing that would help. It's called potassium citrate, it comes in both a pill or liquid (I take the liquid form, because the pill had very little effect on me). I don't know if it would help with the type of stones your son forms though...just an idea to maybe look in too. I wish you the best of luck with the stones. If you have any questions feel free to shoot me an email at amandakrubin@gmail.com
Wow. Never a dull moment. That's awesome that you got that response from the doc/author. But it so NOT awesome that you have to be doing this kind of research and that you and Jack have to be dealing with this crap - still! Love the keep calm and carry on. Although I might revise it to say keep calm and have a drink!
Hang in there Friend.
xoxo
Keep calm is a good approach. I'm impressed that you were able to get the study and it sounds like you will be getting more information. Hopefully there is a way to keep Jack from getting more of these stones. I'm really sorry this is dragging on so. XOXO.
I'm so sorry to hear that! Amen to have a drink, and in the meantime I'm praying for strength for you and Jack, who is such a trooper, I just hate that the kidney stone is still around... I'm sending you a big hug!
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