Car troubles

August 20, 2009 at 12:30 pm Leave a comment

Because it can never be quiet around here now we need to buy Matt a new car.  Matt’s car is in the shop and will cost $1000 to just make it drivable. And our friend, M, who knows everything about cars said that really the car only costs $1500 so why put $1000 into it. Ugh. So now we are short one car and are car shopping. And let me tell you it’s not fun. Now in the scheme of things I’ll take a broken car vs. a sick kid but why can’t it just be easy?

And on the kidney front all is fairly status quo. Gabe has an appointment with the renal dietician in 2 weeks so hopefully we can fatten him up. Then he goes to the cardiologist in October for an echocardiogram to see if his heart muscle is enlarged.  Max is doing well and his ear has healed nicely.

My only other concern is I wonder if my pediatric nephrologist is up on all of the research surrounding ARPKD. He has awesome bedside manner, is extremely nice, is knowledgeable about kidneys in general, and is very approachable. Not to mention I can email him at any time with any question and he is pretty quick with his responses. But 3 things bothered me at our appointment. One is that Gabe’s b/p’s are borderline but instead of increasing his meds he just wants us to see the cardiologist and see what he says. I’m just not sure why he isn’t making the call as he has done in the past. The second thing is we talked about potty training with Gabe and he said that the excess urine is not necessarily related to the ARPKD, but everyone else has always said it is related to the ARPKD and the lack of concentration of the urine. This doc has actually said that in the past as well when we talked about Max and not being night trained. He actually sent us to a urologist to make sure there wasn’t another problem going on. But all of my friends’ kids also had trouble with staying dry at night. And then the third thing is that the guru in the field told me to do a doppler flow study of the liver to the spleen to see about portal hypertension. We did this but my doc said he does not feel these tests show anything and are not accurate measurements of portal hypertension and he just recommends scoping for varices in adolescence. But I am pretty sure that the awesome liver doc from NIH said he does not recommend scoping unless there are symptoms and/or the platelet count is either low or has made a steady downward slide.

So now what do I think and what do I do. I know my boys are fairly status quo. I know that their numbers are either good or status quo. I know what symptoms to look for. Do I stick it out with him b/c I do like him and it is convenient and other docs have heard of him and say he’s good? Or do I start to look around for a new doc who most likely won’t know any more than he knows about ARPKD. Ugh. Very frustrating situation for me. I am not sure what to do. And at this point we are scheduled to go back to NIH next spring so maybe just wait to see what all of those tests show and try to run this all by the guru and see what her opinion is.  I only wish she lived closer to us. I would love for her to be our doc.

And b/c this post has been all over the place I might as well mention one more thing: my 2 BFF’s with kids with ARPKD have a lot going on in their lives right now and I’m thinking about them a lot and really hoping things go well.

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Memories the future

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