August 30, 2007

Kidneys schmidneys

Benjamin had a visit with his nephrologist today. He had an ultrasound of his kidneys which was an easy enough procedure...wish we could say the same for the urinary catheter. Poor guy! He was all smiles with the doctor until that darn catheter.

Well, his right kidney is still abnormal - "mild dilation right renal pelvis" as the radiology report calls it. The nephrologist calls it hydronephrosis:

Hydronephrosis is dilation or stretching of the area of kidneys where urine collects that can occur when there is an obstruction of urine flow somewhere along the urinary tract, most often in the upper section.

Normally, urine flows from the kidneys down through the ureters and into the bladder. But, if there is some kind of a blockage that prevents urine from draining properly into the bladder or out of the bladder, the kidney overfills with urine and hydronephrosis occurs. The blockage may be partial, letting urine pass, but at a slower rate and with increased pressure.

Most children with hydronephrosis are born with the condition...It is the most common urinary tract anomaly...In mild cases and even some moderate cases of hydronephrosis, children will have no symptoms and the condition may disappear on its own within the first year of life. In more severe cases, when kidney function is affected, the infant or child can experience pain, bleeding and infections. These symptoms may not develop until months or years after hydronephrosis is first detected.

So the good news is that his kidney problem is mild and there is no need to do anything at this time besides watch it. He'll have another ultrasound in 3-months. The bad news is that it's still swollen so it's wasn't just a fluke like we had hoped.

Another bit of not-so-great-news is they found some white blood cells in his urine sample. This could indicate an infection so they're sending that off for a culture. We should know by Sunday about that. If there is an infection, he'll have to have it cleared up before he can have his next surgery.

Oh yeah, and it looks like Ben has eczema. Well at least that's something normal, right?

August 26, 2007

Vroom! Vroom!

We finally got a new (used) car to replace our car that got stolen. It's lovely and we think we got a great deal.

We also finally "recovered" our stolen car. It turned up in a city an hour-or-so away. The police found it in a hotel parking lot in the possession of a couple of people who claimed they bought it from some guy. We went to go check the car out at the impound lot and it was trashed. Cigarette ashes all over the place, some mysterious white stuff smeared all over the seats, something resembling spaghetti in the center console (we think it might be that medical tubing you would tie around your arm to get a good vein...ewww), and a bunch of nasty clothes in the back. No sign of Ben's car seat. Oh well.

August 22, 2007

Wings

We've been listening a lot to a CD called "A Child's Gift of Lullabyes" which was given to us as a baby shower gift by one of the St. Paul's families. There's one song on it that we're particularly fond of called "Wings." The lyrics are something like...

If I could, I would give you wings
to carry you out of the storm.
They'd lift you up above the wind
and you'd be safe and warm.

Well, with the help of a wonderful organization called Angel Flight Central, we're giving Ben wings!

It's a bunch of pilots who volunteer to fly people for medical reasons. We filled out some forms online and a representative from the organization called us. She said all we need to do is let them know when Ben's appointments in Cincinnati are. They'll fly us there and back as many times as we need.

August 18, 2007

Diaper notes

Mike and Benjamin seem to have the most interesting adventures when mom isn't around...

I went to bed last night and Mike stayed up late for some reason (I suspect he was fussing over health insurance stuff). When I got up this morning I found this note, written on a post-it and stuck to one of Ben's diapers.



Well I inspected the evidence and the "something odd" seems to me to be a bit of grass. Personally, I think this might be THE most hilarious note ever written!!

- becca
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August 16, 2007

Stomas, stomas everywhere!

Today we attended the UOAA National Conference (United Ostomy Associations of America). Once again, we learned a ton of things we didn't know before but mostly benefited from meeting and mingling with other parents of kids with similar issues to Ben's. Ben was in 7th heaven with all the oogling he got there. Ben's grandparents went, too, which was really great. We had several people tell us how lucky we are to have such support from Ben's grandparents. You can say that again!

These events can be pretty stressful. They make Ben's medical issues feel so heavy. When he's at home with us, he's just our little baby doing his baby thing. When we go to a conference like this we're reminded that he has some serious health concerns, that these next few surgeries are important, and most frightening of all...we're sorta responsible for it going well for him.

And, unlike most parents, we're more informed about his medical state than his pediatrician. She searches the internet for information about VACTERLS just like we do. There isn't a doctor out there who specializes in this condition. Instead, we coordinate care between 5 different specialists. We're responsible for figuring out which specialists are the best, which surgeons are actually experienced with the surgeries he needs, which hospitals provide good follow-up care, and the list goes on and on.

Another sort of odd revelation is that it could potentially be years or who-knows-how-long before we talk face-to-face with another parent with a child with VACTERLS.

August 14, 2007

Look ma...

...I can grip!


We kinda, sorta, maybe put the digital camera through the washing machine. It turns out that really isn't good for a digital camera. Oops. We'll see what we can dig up out of the computer storage, but unfortunately this means we may not have many current photos to share for a while. No complaint letters, please!

August 10, 2007

A date in Cincy

We finally have a date for Ben's big surgery...September 24th!

And it will be in Cincinnati.

Benjamin's next surgery is "the big one" that will repair his digestive tract. Ever since we heard of VACTERL and started connecting with other families dealing with the same problems, we've heard about Dr. Pena at the Cincinnati Children's Hospital. Everyone tells us that this surgery has to be done right the first time. Dr. Pena is the man who pioneered this surgery and trains pretty much everyone who performs it. We got the opportunity to hear him speak at the VACTERL conference and really liked what we heard.

We had to send a whole mess of paperwork, records, and images to Cincinnati. The surgeons reviewed it all and created a surgical plan. The nurse finally contacted us today to tell us what they want to do and help us find a date.

So, in September we're Cincinnati bound!

August 03, 2007

Big city trip

On Thursday we took Ben for his first trip to the big, bad city of Chicago. He loved riding the Metra train...the whole hour and 25-minutes trip.



He was a super-trooper walking the streets of the loop with his pop.



Fun times!
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Happy Friday!

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