Archive for August, 2009

the future

I am often thinking about the future, as you probably know by reading my blog. And boy does it frighten me. Right now we are fairly status quo and that is a good thing. But the future…now that is a different story. That will bring lots of “fun” changes for the boys as far as health goes. I’ve been thinking a lot about it because my two friends with kids with ARPKD have had a lot going on in their lives lately and it makes me realize what is in store for us. I know every child with this disease is different but no child with this disease lives a care free life. My one friend has two kids with this disease, one has had a transplant and one is about to. The one who already had a transplant had a staph infection last week from a spider bite b/c he is immunosuppressed b/c of the transplant. Her other child is about to have a transplant and if she were not scheduled for one would be on dialysis and has many many issues going on right now while waiting for her new kidney. My other friend with a son with ARPKD is in the hospital with him right now. He had a transplant and she found out that he is in slow rejection b/c of a virus and now he was dehydrated b/c of a stomach bug. Just a little spider bite and just a stomach bug. Not at all related to ARPKD but how it affects them b/c they do have ARPKD.  

All the little extra things we as parents of kids with ARPKD have to think about b/c our kids do have ARPKD.  Like not getting dehydrated, not taking motrin, not getting kicked in the belly, watching out for blood pressures, making sure there is no blood where it shouldn’t be (you get the picture), making sure a bug bite doesn’t get infected, making sure they are only tired from doing too much not from being anemic or having a low white count or having a liver infection…., making sure they take their meds when they should, making sure to get the refills we need on meds when we should, making sure to have a copy of all of the blood tests and sonograms we have ever done, staying on top of our insurance…….. and I could go on and on. People often say to me “oh they look so good”, or “oh they could have a cure soon”, or “G-d only gives you what you can handle”, or “but they have good kidney function right now”, or “it could be worse”, or “it is what it is”, or “blah, blah, blah”…… Yes, it is what it is and I have to handle it b/c who else would but come on. Sometimes it’s just too much and really we are status quo and things are quiet around here compared to my friends with kids with ARPKD but this disease is just enough to push me over the edge sometimes. Or a lot of the times.

August 26, 2009 at 10:28 pm 1 comment

Car troubles

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.

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

Memories

Yesterday Max had to have a mole removed from his ear canal. They had to do it in the OR with general anesthesia. I knew it was a no big deal surgery but it was still very stressful and very emotional. Being in the hospital with all of the monitors brought back so many memories of when Gabe was born and in the NICU. I’ve often said I haven’t gotten over the trauma of that even though he pulled through and is doing so well today.  But our experience yesterday was great. It was a wonderful children’s hospital and every single person who interacted with us was excellent. And Max did great. The procedure was about 10 minutes and he woke up okay. And the doctor feels it looks like a benign nevus but we won’t know for a few days on that one. But also being in the hospital made me think of the future (which I do all the time and I’m sure that doesn’t surprise anyone). But the future of transplants and more hospital stays and more issues surrounding ARPKD kept creeping into my head yesterday. It is a long journey we are on with ARPKD and an emotional and stressful one as well.  I know it won’t be for years before I really need to worry about transplant but again I wish I had a timeline for things and could plan out the future better. Last night on our way to a BBQ we saw a car with a “donate life” license plate and Matt and I were talking about it. Max said “I heard what you were saying” and then went into a whole conversation of transplants and how they happen and how they work and when and if he will need one. It was an interesting but very good conversation. I really think Matt and I answered all of his questions truthfully and in a very matter of the fact way that didn’t scare him. Or at least I hope that is how it went. 

Now today I can take a deep breath and move on from here.

August 15, 2009 at 11:28 am Leave a comment

Update

I never wrote an update about our nephrology appointments. In general they were good and the boys are status quo. Max is extremely status quo. The only change with him is that he needs to start taking an over the counter iron supplement because his red blood stores are low, which is extremely typical with ARPKD. Other than that all is as good as it could be with ARPKD. He has 100% kidney function, has extremely good platelet counts, has kidneys that are not so huge, has a spleen that does not come below his rib cage, and has no restrictions.  Sounds good to me for now. As far as Gabe goes…. well he is also fairly status quo. He still has 100% kidney function which is amazing and he also has good platelet counts, although not as good as Max. He also needs iron for low red blood stores.  He is also not growing as well as we would like so we need to see a renal dietician.  His kidneys are also very large – 10 cm each, which are bigger than Max’s.  This could be one reason why he isn’t growing as fast as we would like for him to.  And since his kidneys are so huge our doctor feels he will need protective padding when he plays any type of sport not just contact ones.  I know in the scheme of things protective padding really isn’t a big deal but it’s just something new to think about. Ugh.  He also needs an echocardiogram to make sure his heart muscle is not enlarged because his b/p’s have been slightly higher than we would like for them to be.  

And Max will be having the mole removed from his ear this Friday. Really a no big deal surgery and hopefully only about 5-10 minutes under anesthesia, but I wish it could have been done in her office rather than in the OR with general anesthesia.  

So… in general fairly status quo around here with some minor things that of course bother me and stress me out.

August 9, 2009 at 9:25 pm Leave a comment

8 way kidney swap

Yesterday on the today show they had a story about 16 surgeries with 8 people receiving kidneys. Many of them received kidneys from altruistic donors. How amazing is that?  There really are some wonderful people out there. Can you imagine just offering to donate a kidney just because. Not because you have a family member with a kidney condition or because you have a friend who needs a kidney but just because. We really need more people like that in this world.

August 6, 2009 at 9:24 pm Leave a comment

Awesome t-shirt

My awesome friend, J, mom to 2 kids with ARPKD always finds the best stuff. She found this website (http://shirt.woot.com/) and they have a t-shirt that says “I…..organ donation” with a space where my dots are. And this is what it says on their website:

DON’T KNOW WHAT YOU’VE GOT ‘TILL IT’S GONE

Absence makes the heart grow fonder

Among certain peoples, a millionaire is a person who has given away a million dollars. Among certain peoples, the richest man owns nothing, because he has given it all to others. In this world where we pile up extras we’ll never use… wait, we actually support that sort of thing. That’s our whole business model. Look, forget this entire paragraph, okay?

What we meant to say was this: if someone you loved was sick, wouldn’t you give up a kidney? Or a lung, if it meant the difference between life or death for your fellow man? Or a couple feet of intestines and a little smidgen of liver? The human body knows that redundancy helps us all. Keep that in mind when you see the “Buy two” option. You never know when you’re going to wish you had something to give to a loved one. Or even a stranger.

Wear this shirt: so that when people ask about the blank, you can tell them the story of Odin, who sacrificed his eye for knowledge. They didn’t keep records in those days so we don’t know who got the eye but it must have been pretty cool, walking around seeing everything with Odin’s eye. Like HDTV for life.

Don’t wear this shirt: if you’re worried people will think you’re a tin woodsman who has not yet met the Great and Powerful Oz.

This shirt tells the world: “No, wait! That’s not a legal document I’m wearing! It’s a joke! A joke requiring a little bit of thought! Wait!”

We call this color: White Blood Sale

Pretty cool, huh. I think I might order us all t-shirts.

I had this whole other post in my head about the boys’ doctors appt and how my friends here are just not supportive enough for me but thought this would be a better post for today. 

August 3, 2009 at 9:28 pm Leave a comment


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