October 31, 2008

Cuckoobananas strikes again

Well, we had a couple of months away from doctors and tests so that was a nice break while it lasted. Unfortunately, we're back in the cucukoobananas saddle again.

We took Ben to the pediatrician on Monday because we had noticed some changes - he's been drinking waaaayyyy more milk and water, wetting diapers like he's getting paid to do it, and his hands and feet have looked puffy off and on...oh...and he has this rash on his face. The pediatrician looked him over and thinks the rash is probably eczema and she ordered blood and urine labs just to be on the safe side. For a kid with kidney, intestinal, spinal cord, heart, and bladder issues this is just what you have to do.

OF COURSE the labs came back with horrible results.

But, just so this isn't the downer post of the year we should tell you that Ben seems just fine. He is running around and happy and playing and doesn't seem to have a care in the world. He got to ride in the fancy-schmancy grocery cart the other day. There was even a television in there that played Elmo and Thomas. I have to say, it was totally worth the $1 as I got to grocery shop for an hour without once having to dig out a toy, pick junk up off the floor, or do a clown-act to keep him in the cart.

So, back to the labs. Skip this if you don't want to medical mumbo jumbo details...

His BUN levels are high, his BUN/Creatinine ratio is high, his Globulin is low, his Albumin/Globulin ratio is high, and his Alkaline Phosphatase level is very, very, very high. What the heck does that mean? Who the heck knows!

But, we're trying to find out. The concerns are mainly with his kidneys, liver, intestines, and possibly spinal cord. Gee, we've really narrowed it down, huh?

Our pediatrician is mainly concerned about the liver and intestines. She's pretty much stepping out of the picture now and deferring to our specialists.

Kidneys make the top of the list because he already has a history of problems there. The urologist doesn't believe it's a kidney issue because his creatinine level is okay, but he's still going to consult a nephrologist to be certain. He thinks it is more likely to be his liver (which would be a new organ to add to Ben's watch list) or intestines so he is also consulting a gastroenterologist.

Our neurosurgeon, Dr. Frim, says he thinks it is most likely due to nutrition, kidney function, or liver function. But, if nothing turns up there he wants us to let him know and he'll review it further from a neursurgery standpoint. We have to tell you, once again, how much we love surgeons who email. He wrote us back in less than FIVE hours. So wonderful.

So, that's where we're at. Obviously, we're pretty nervous and scared, but at the same time we can't completely freak out because Ben seems just fine. Here is proof...pictures from a jaunt to Chuck-E-Cheeze -

If any of you out there have ideas or suggestions we're all ears. We're pretty much just waiting to hear back from the various specialists. And we're packing our bags in anticipation of a trip to the hospital in the near future.

Such is the life in cuckoobananaland!

October 19, 2008

Au revoir, Earline!

Our good friend, Earline, is moving away to go live the high life in Florida. Boo hoo hoooooooo!!!! A friend is too weak of a term for her...actually, she's sort of a relative - she's Mike's grandmother's brother's wife's niece and happens to live in our same town. She has been SUCH a hero and cheerleader for us. She passed along her family hand-me-downs from 9 boy grandchildren. She loves, loves, loves babies and children and is one of the few friends who actually asks to hold the fussing baby. She's helped get us out of the house during times when it seemed almost impossible to function...and boy did we need to get out. She's cheered us along all the way and passed along tons of valuable advice.

We are going to miss her!!! (But she already promised to get a high chair and crib ready for when we visit.)

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October 16, 2008

Two weeks to order your wreath!

Just a reminder that you have two weeks left to order your holiday wreath...and help support The VACTERL Network - our main source of support in dealing with Ben's health issues.

Just visit this link to learn more about the wreaths (which you can have delivered directly to a friend as a gift, by the way) and how to order -



October 13, 2008

Famous VACTERL mom interviewed by ABC

Annabelle Gurwitch, hostess of Dinner & A Movie, was recently interviewed by ABC News. Pretty cool!


I especially liked her reaction to the interviewer's question, "Who is the filter...?"

Chuckle, chuckle, chuckle.

October 10, 2008

Very sad for a VACTERL friend

Elias was born in May of this year and has been in the hospital ever since then battling all of the issues with VACTERL Association. Unfortunately, it turns out he does not have VACTERL Association (one would think this is a good thing right?). Instead, their recent genetic tests have shown he has Fanconi Anemia.

His parents, Katharine and Michael, recently celebrated their wedding anniversary and then got the terrible news.

How his dad described it -

"Hearing this news today was a crushing blow. You could tell how upset and disappointed everyone was on the medical team. We kind of had a bad feeling going into the meeting when the minister that baptized Elias showed up in attendance. He had obviously been called to help the Social Worker and Genetics Counselor help us comprehend and comfort what we were hearing. Several of Elias regular nurses were in attendance as well. They were as shocked as we were, and very emotional and teary eyed. They all knew how serious this diagnosis was, you could see it in their eyes, hear it in their voices as they tried to hold back the tears, and watched their somber faces as the facts were spoken. We managed to hold it together until the Doctors left the room, leaving his nurses, minister, and social worker alone with us. We all broke down. So many there have become so attached to Elias, his wonderful attitude, extraordinary ability to make everyone's day happier, and that amazing smile he gives to everyone that he feels connected with. Word quickly spread throughout the NICU and many nurses and doctors offered hugs, tears and tremendous show of support."

I can't help but think of Benjamin and our family. How much their description of their son so perfectly matches ours. I know how absolutely miserable we were when Benji was being tested for this. We were so miserable we didn't even write about it here because we didn't want to share the misery with others. I can only imagine the misery of this news. I find myself in tears today, for the first time in a long time. I am angry and confused with the world and with god again and just keep wondering WHY some people go a lifetime without a care and others - little children - suffer and struggle. I know life isn't fair and never will be. It just plain pisses me off and makes me sad that children go through these things.

You can see his journey here - mycarouselofprogress.blogspot.com

Please keep this family in your thoughts and prayers.

October 09, 2008

Wreaths for VACTERL

The VACTERL Network is selling holiday wreaths to raise money for the next conference. They look beautiful and they're not that expensive. Everyone tells me these are the nicest wreaths they've had. If you're planning on buying a wreath, please consider buying one from us to help this awesome group. Also, please pass along this website to any friends, family, or coworkers you think might be interested!


October 08, 2008

VACTERL & Prayer Article

Stumbled across an interesting article (rambling) about prayer written by the mother of a child with VACTERLS Association.

"As word of the dire condition in which he arrived into this world spread, a second wave of cards arrived announcing, "we're praying for you."...When the other parents at the neonatal intensive care unit at our hospital inquired if I would like to pray with them, I politely declined. I was then informed that studies had proven that prayer could prove an essential element of my son's survival. I, who have always proudly maintained a dubious relationship with God and prayer, considered my options. O.k., just how much prayer was it going to take to fortify my son? How many people praying would be enough? Which words would we use? And for what exactly would we pray? What if we prayed for a long life and it wasn't in God's plan that he survives? Wasn't it arrogant on our part to think we might thwart our son's ultimate destiny?"

The full article is here - http://www.huffingtonpost.com/annabelle-gurwitch/were-praying-for-you_b_19134.html

October 07, 2008

This time last year...woah

Boy oh boy, this time last year was quite possibly the toughest of all. Ben was a couple of weeks past his big surgery in Cincinnati and it seemed like everything had gone perfectly. He was a happy little baby just a couple of days after surgery and we spent a couple of weeks just hanging out in Cincinnati waiting for our post-op appointment.

The post-op appointment went fine. They just removed his urinary catheter and once he filled a diaper we could go home. I packed up the car that morning and checked out of the hotel. It promised to be a fabulous day - we were going home! And the drive promised to be beautiful with lovely, sunny weather. Boy, if we had known the direction things would take...

Things did not go well. I still have regrets about all of it. Ben was in obvious, terrible pain and I just tolerated it. Sure, I made phone calls to the nurse and I was worried and upset. But I so wish I had acted differently. When I replay it all in my head I would have marched into the clinic and demanded to see one of the surgeons or else I'd be marching him to the nearest emergency room. But I didn't. I just waited while he screamed and thrashed around (when he wasn't passed out) for about 5 hours.

Well, eventually we saw our surgeon and he put the catheter back in and we were stuck there for another week. Then the catheter came out again and it was the same result - Ben in obvious, horrible pain. But this time the catheter couldn't be put back in and even worse this time blood came pouring back out. It was off to emergency surgery. I remember sitting in that clinic room trying to comfort Ben while signing paper after paper and trying to have a semi-intelligent conversation with the parade of people coming to consult with us. I also remember calling Mike and trying to explain what was going on without sounding too worried. I'm sure I said a lot of "It's no big deal." and "It's a simple procedure." Hahaha. Well, it's not funny...but sometimes you have to laugh just to get by.

Ben's dad drove from Crystal Lake, IL to Cincinnati in about 5-hours. I don't even want to THINK about how that was possible!

I had gone up to the receptionist and warned her that Mike was on his way and probably freaking out so if she saw a crazy-looking, tall guy in a suit to just show him back to us. He walked in just after Ben had passed out again and was quiet. I was in the middle of going over things with a couple of nurses from interventive radiology. Mike looked like he was ready to fight Mike Tyson...and if given the opportunity, I really think he would have won. I remember saying, "He's okay, Mike. He's okay. See? He's sleeping. He's okay." And I handed Ben over to Mike for daddy-son snuggle time. And from the corner of my eye I saw a couple of nurses dabbing their eyes with hankies. And Mike asked, "Is that his blood?"

So, Ben was off to surgery for an unknown problem. Our surgeon, Dr. Pena, was very straightforward in telling us that he didn't know what was wrong, but he did know how to fix it. It was absolutely terrifying to hear our trusted surgeon, the hero we had traveled so far to see, saying those words. But we appreciated his honesty.

If you've never sat in a surgery waiting room after-hours you couldn't possibly begin to understand how awful it is. Not that surgery waiting rooms are fun during normal hours, but when you're there at night it's because something is seriously wrong with someone you love. It's not as crowded, but the people there fill the space with their worried phone calls, hospital bags filled with loved-one's clothes and personal belongings, running up to the desk when their name is called, and lots and lots of crying. I know for me this was one of the most scared and miserable I have ever been. I have to assume the same is true for Mike.

When they called our names we hurried up to the desk assuming the attendant would show us back to a post-op consulting room as had happened in the past. Instead we were confronted with our three surgeons standing there. They looked awful. As I was pushing Ben's empty stroller towards them I couldn't help but think, "That's what you look like when you've lost someone's child on the operating table."

Nobody smiled, nobody nodded, nothing. Dr. Pena gestured towards the hallway and said, "Please come this way." We followed behind them and just when I thought I was either going to throw up or pass out he whirled around and said, "Oh, your son is doing just fine by the way."

Oh by the way, huh???!!!!

When we sat down the consulting room they explained the operation and tests they had done and what they had found. Ben was now urinating through a catheter sewn into his abdomen. Tests had shown that a hole had been left in his urinary tract and was causing his urine to escape into his abdomen. Yeah, that must have been painful. Dr. Pena said he had never had this complication happen with any of his patients before. He couldn't have looked more disappointed if you had killed his brand new puppy.

We found out that Ben could no longer ever be catheterized normally. Which, for most people that probably wouldn't be a huge deal, but for a kid who had kidney issues that need monitoring and at least two more surgeries this was problematic. It means for a simple test or anything requiring urinary catheterization Ben has to go under anesthesia and make a trip to the operating room with a urologist. It means at least $15,000 more in billing every time.

It means that pretty much every time we get in the car I contemplate what I will do if we get in a car accident...what my last words would be to the first responder to make sure that nobody catheterizes our son. It's ridiculous, I know!

It's amazing all that we went through during just a few weeks last fall. Tests, hospitalizations, operations, met new friends, family and friends supporting us, introduced to the Ronald McDonald House, emergency surgery...good grief.

Pictures can do the talking. These were all taken in the span of a few weeks in Cincinnati at the aquarium, at the hotel, in the hospital, at the Ronald McDonald House....

October 06, 2008

The VACTERL Network

About a week after Ben was born we discovered a support group for VACTERL Association on the internet. That simple discovery completely changed the trajectory of Ben's health care. The group is call The VACTERL Network and it's basically just a collection of parents of VACTERL children as well as VACTERL Adults who come together to support each other. You might remember the conference we attended when Ben was just 8-weeks old. We left that conference overloaded with information but finally connected to other parents and people who we could relate to.

Most importantly, if it weren't for that conference we may have continued Ben's medical care with his original doctors. This could have potentially been devastating to his health. We most likely would not have had his spinal cord issue explored further...or taken care of at all...he could have ended up paralyzed. We probably wouldn't have gone to Cincinnati for his GI surgeries and had the best surgeon in the world perform his operations. We definitely would have felt more isolated this past year.

Well, enough talking up The VACTERL Network! The point is that we are doing a fundraiser for next year's conference.

Check it out!