Too tired to think of a title!

This is a pic of the cake of his dreams....note the lack of smile from that birthday boy. He was a bit under the weather that weekend. In fact, he's been a bit under the weather for the whole winter. Between resp. crud, low blood sugars, venting and the persistent middle of the night awakening due to GI pain, we're lucky he made it through his birthday outside of the hospital.

Speaking of GI pain, last week we took him in for an emergency tube placement as "Mr. Mic Key the Jtube" was defective. While placing it, the radiologist showed me his extremely dilated small bowel. I do know what a small bowel is suppossed to look like...and it's not suppossed to be the same size as his stomach. Yikes. I left his GI doc a message to make sure he looks at those images. Of course, he never called back. So on Monday get to be THAT mom for the 157th time and pester the guy that my kid's belly hurts and his intenstines look like he's growing a watermelon in there. I'm so annoyed that our (aka mine because my other half is snoring away most of the time when our kid wakes up screaming) concerns about lack of sleep and quality of life have been disregarded and hope I can keep that annoyance out of my voice.

After I harrass him, we are headed to MN for appts. Urology, Neurosurgery, Nephrology, Dietician, and Endocrinology.....hoping to come home with no new surgeries and lots of new solutions! I had to pay fthe full price or Glucagon this week due to insurance issues. Holy goodness, there has got to be a less expensive way to keep this boy alive.

As for the other kiddos, Isaac is on the mend. We're not suppossed to talk about it so I won't, except to say GOD FORBID THAT BOY EVER NEED ANOTHER SURGERY. If he doesn't aspirate and die in recovery, his father and I may throttle him when we get hime home. Not the best little patient ever....

The normal kid (Will) started on medicine for bedwetting, because I am to the point that sleep comes before washing sheets in my life. He's 11, still wets the bed, and I'm done with it.

Anyways, that about sums it up!

Four. And not fixed.

I guess that the title sums it up.

Benj turned four yesterday and he's no where near being a normal kid. Actually, I could care less about the whole normal part of it. I just want him to be a bit further from abnormal.

Unfortunately, this birthday weekend gave us ample opportunity to reflect on all the parts of this child that do not function well. From the life threatening low blood sugars to the extreme tummy pain at 3 AM, he seemed to run the full gammut of illness over the weekend.

The low point of the weekend: a hands on demonstration to teach our 10 year old son how to give his little brother glucagon through his insuflon.

The high point of our weekend: the fact that that 10 year old ROCKS at this sort of stuff and handles it like a pro.

I guess if we ever get stranded in a desert and a javelina gnaws off my arms then Will can keep Benji alive with injections. Right? See if I ever take these boys to Arizona again. They enjoyed that scenario WAYYYYY too much.

I'd love it if a doctor or two would come forward and proclaim that by age five they will have his bladder, pancreas, and gi tract fixed and fully functional.

Is it gonna happen?

No.

Will telling myself it isn't going to happen make 2/19/12 any less difficult?

Not a bit.

My only consolation: This child seriously does not know that there is anything WRONG with him. How the heck is he turning out so good?

Today I asked him while at Walmart what he wants to get his cousin for his birthday.

Benji: "Gavin wants a new backpack for his Na-Na" (aka the feeding pump's nickname, because we are weird enough to name all of this kid's tubes, holes, and equipment in a futile attempt to make them seem less abnormal).
Me: "Gavin doesn't have a Na-Na."
Benji: "That's too bad. Maybe his mom and dad should buy him a Na-Na like mine!" (insert cheesy grin because this is the BEST thought he's ever come up with, in his opinion)
Me: "How about a lego toy for his birthday?"
Benji: Looooonnnngggg drawn out sigh. "I guess sooooo."

So with the obvious fact that he isn't going to be fully functional anytime soon, I will turn my frustrations to something more productive in locating overalls for this boy on my day off tomorrow. I managed to track down one pair this week at a farm supply store in Vermillion. He has reached a point where too many holes plus a glucose sensor in his belly region is making finding pants with waist bands that don't create leaks nearly impossible. But overalls are hard to come by. We live in SD though people, aren't little boys suppossed to wear overalls when they help their daddies work on tractors? Especially little boys with more "leaks" than the average farm tractor?

There's a new dog in town!

After the heartbreaking loss of our little Petey, this little amigo came to join our family. Meet Jorge, the Chihuahua. Is he rocking that winter coat, or what? By day three in our house we had to go invest in a wardrobe for the little guy 'cause SD is cold this time of year! He came from Sioux City Animal Control. As a sweet little four year old the best thing about him is that he is housebroken. Apparently we suck at house training pets after Sadie's (now over, hopefully) two year stint with peeing on our rug. He had been there for months recovering from a nasty case of kennel cough after being found as a stray. We had gone down there to get a Pomeranian only to find out that she had been adopted by another family even though promised to us. Jorge was our consolation prize.

Where did the named Jorge come from you ask? Well, last year when Benji was in the Children's Hospital I met George Lopez, comedian/actor/kidney disease survivor. I thought that he was pretty awesome and it seemed right to name a hispanic dog after him. Sorry though Mr. Lopez, "Jorge" sounds cooler than "George."

Besides, our Schnauzer is named Eddie Murphy Dennison, because he's black and funny, so it only makes sense to keep with the whole race/comedian theme!

And a prize he is! By the end of week one we figured out, by accident, that Jorge understands only Spanish. When I jokingly told him to "Vamanos"........he did. So, we have ate some tacos, rejoiced in the fact that he is not one of those Chihuahua's who sits and shakes all the time, brushed up on our Espanol, and got down to making Jorge part of our family. We got his vet records through his microchip and found out that he has been well cared for medically. Animal Control told us that they contacted his owners to tell them that he was at the shelter and they never came to get him. Why the heck would a family invest hundreds of dollars in a very sweet, loving pet and then never claim him? Their loss, our gain!

We went to the vet a few weeks ago with him to verify that there was a physical reason why he can not bark. Have you seen the movie "Grownups" with the Labradoodle who is going to have his vocal cords severed? Well, according to our vet, Mr. Jorge apparently had his cords surgically altered at some point in his life. So, he does interesting things like cough, stomp his feet, and swing his head back his forth to convey his feelings just as a dog would bark.

Yo Quiero Taco Bell!

1st week of school for Mr. B!

Momma- I need to wear my new cowboy boots...

Back in the pre-Benji days, we used to take family vacations. Now, we apparently take summer trips to medical conferences that combine fun with education, to ensure that our child who is missing more pieces than the puzzles on his bedroom bookshelf grows up with the unshakeable belief that different is okay and so that his parents (who are obviously not doctors) can get the needed info to halfway make informed medical decisions about those missing puzzle pieces (aka organs).

I meant to blog on our trip to AZ months ago, but summer kinda got away from me, the kids started school, I had a million job interviews, etc, etc... By now, I've talked to most everyone who's probably interested in how the trip went so I'll spare everyone all the details. Except for the picture above....

Yes, that is our little Benji meeting Tony Bell, a pro bullrider who just also happens to have an ostomy. I had heard about Tony a couple of years ago and had thought at the time that it would be sort of cool if Benji could ever meet him, as long as he didn't think that he needed to grow up and do dangerous things like riding on angry, snorting bulls after meeting him.

Hahaha. The jokes on me!

And what is our little guy doing in that pic? Yeah, he's telling Tony that he's putting a plastic cowboy hat table decoration on his head and telling Tony that he's gonna grow up to be just like him and ride bulls. Rweally, rweally mean bulls!

Now, if that doesn't paralyze me in fear and make my heart skip a beat!

He spent the rest of the night telling me that we needed to go home to get his John Deere cowboy boots. Sure Benji, I'll fly right back to SD and get those!

During a speech, Tony told a story of an injury he sustained which led to xrays which led to the doctor informing him that he was missing his tailbone. Will found that hilarious. I guess that's one of the hidden benefits of being born with sacral agenesis, huh?

I didn't know if Benji would "get it" that Tony, or the other numerous children and adults who had or have had ostomies, at the conference were like him. He not only got it...he came back talking about it. It made a huge impact on his little brain to meet other people with similar experiences. He checked out a belly or two, kissed a baby with an ostomy, compared "buttons" with a new friend, and rocked the pool with his ostomy bag on. When another child vomitted on the floor, Benji came running to tell me that the other child needed some Zofran. And to make sure that I knew that it was not HIS puke on the floor. Hmmm...glad I'm not the only parent out there with a child who randomly pukes.

Our trip was everything I imagined it to be- complete with great memories for Will, role models and new friends for Benji, and the chance for me to reconnect with old friends and connect with parents of other children who we had only read about through the PTN and VACTERL Network up until this point. We met some wonderful adults who had ostomies as children (Will, along with every other male above the age of two fell a bit in love with a beautiful young woman named Amy), had a great experience of feeding the Javelinas every morning from our hotel room deck (google them), and enjoyed night swimming under in the desert. We came home with a three year old eager to try his new obsession out by riding the schnauzer through the kitchen. Eddie was not amused.

So, back to the picture....

....if you are a parent of a PTN child, I would highly recommend that you NOT go to the 2012 conference....

....unless you are open to accepting with a smile that someday that NICU baby who you spent MONTHS learning how to keep an ostomy bag on, is gonna tell you to go sit down so that he can talk to his "cowboy friend with tummy problems."

Thanks to my friend Janel for the picture. Afterall, I was told to get out of the way! :)

Lemonade

It's been a particularly frustrating week. I had plans to do absolutely nothing all week and instead ended up spending the majority of the week in the clinic after Benji's blood sugars which had been controlled well by his new med seemed to go completely out of control with a bit of a cold virus. A simple cold spiraled into edema in places that make his daddy cringe, diarrhea, fever, critically low blood sugars multiple times, etc. I used his glucagon twice during the week and apparently that was not okay. My nothingness was was completely interuppted.

Did I mention the diarrhea? Ugh.

I received one of those great "when life hands you lemons....." cards in the mail yesterday from a person who has had no experience in their life with making lemonade. It was cheery and encouraging and overall made me want to scream.

My first thought was.....

....BITE ME.....

......and my second was "how the heck will blank-blank ever know how to handle a crisis in her life when one comes up if she constantly has only good things happen in her life. Really, she's the same age as me so therefore she will eventually experience the aging of parents, her kids will become teens and have their hearts broken, the dog will die, SOMETHING will go wrong" and how will she ever cope if she has had no practice?

Why the heck do we keep getting so much practice at our house?

How the heck do you get to the age of 35 and not experience death, divorce, job insecurity, or even a minor crisis like the roof on your house falling off after the internet repair man stomps around up there?

So the tacky lemonade card went straight to the trash barrel in the post office (I can say that on here because I know that Mrs. No-lemons-in-her-life does not read my blog.)

After I got done trashing the encouraging card, I got on Facebook and read of the death of a 2 month old child named Hunter, born with VACTERL, who died after surgery this week. The community of VACTERL families that we know is the most welcoming group of people that one could ever meet. They have been there, done that, and are bonded by that common experience. Too many of the children experience a never ending stream of hospitalizations and surgeries. Too many die young. For every family that loses their child after fighting so hard to keep them alive, there are 50 families "left behind" struggling with the fact that that could be their child at any point.

Then I sat down to try to type my own sort of lemonade card to Hunter's family.

And I have nothing....

What the heck does one say when you've been through hell and back with your own child...knowing all too well that you have a return ticket to there that you never know when you'll be using?

Do you apologize?

Empathize?

Or just sort of say nothing and hope to God that you are never in that family's shoes?

I idolize my friend Annie, mom to Joey- a gorgeous little VACTERL Angel who passed away last year. We've spent more time with Annie after Joey died than I ever expected. She watches Benji grow and struggle to stay healthy. We talk about Joey and in general I have no idea what to say to her about him. Seeing her is a highlight of our trips to MN. I can not imagine how painful that would be to go on after losing a child I fought so hard to keep alive. If my child ever dies, expect to find me on the floor next to a bar stool at the Pub because I highly doubt that I will be that resilient!

While speculating on what to write to Hunter's family, I received four texts from people concerned that the Intensive Air helicopter from Sioux Falls had landed here in Vermillion. Each person just wanted to make sure that it was not here for our Benjamin.

Nope, not this time...we're good for the day.

****knocking on wood****

Hi ho, hi ho......

Yes, it's off to work I go!

After a long (almost) year home with the little dude of the household, I am returning to fulltime employment outside the walls of what we affectionately call The University of Dennison Hospital. Seriously, we have more medical supplies than a medical warehouse.

Between 50 plus hours of nursing per week and preschool 16 hours per week, I am confident that the little ball and chain I've been toting around for the past several months will be in good hands. I will once again be able to have meaningful conversations on a daily basis with other adults about things I went to school for YEARS to learn how to do, rather than discussing ostomy output with my child's doctor or placement spots of insuflon ports with my husband. I will no longer go weeks without speaking to an individual over the age of ten.

On my first day of orientation, I was almost giddy after a lengthy conversation during rounds with the psychiatrist of the treatment team I will be a part of in my new position. I got to use words like "affect", "psychosomatic complaints", "diagnostic criteria", etc., etc. I tried not to giggle as we walked through the halls between treatment units about how overjoyed that not a single sentence I spoke that day included the words "stoma", "creatnine", or "elemental formula". I could get used to that!!!

An unexpected benefit of the position: I was able to reconnect with my adult niece who I have had little contact with over the past few years. While I've been living out of a suitcase at various hospitals, she put herself through nursing school and is a new hire for the state. She will be working overnight so I don't know how much our paths will cross. We were able to catch up over lunch and I filled her in on how much life has changed for Glenn and I including Will's feet being bigger than mine (the boy is gonna be big like his uncles), Isaac learning to talk (speech is still a struggle), and her Uncle Glenn the mechanic mastering the art of infusion pumps, port accesses, and IV meds all in the name of keeping our littlest alive. She got a kick out of the last part!

The most common questions asked of me at this time of monumental transition:

"Was is hard to find a job that is flexible in your field?"

"Are you worried that you'll lose his nursing care again?"

"Will you miss being home with him?"

"Why don't you go back to school to be a nurse?"

My answers:

Yup. I was picky. I interviewed with several private agencies and determined that state agencies are far less likely to care that my multimillion dollar kid is a bit taxing to take onto their insurance plan.

Heck ya. Our nursing agency made it very clear through their lack of care provided for 10 months that they do not value him as a patient. I have no doubt that they'll discharge the first time he is hospitalized.

Yup. I would love to not have to work. Most days he is pretty independent though and would rather play fetch with the dog than snuggle with me. We need to maximize our resources (aka nursing care) to catch up financially from years of expensive medical travel, medical debt, cars that need repairs, etc... He's growing up. We're figuring out more frequently how to keep him out of the hospital. His hospital stays are shorter. We are broke.

And HELL NO. Contrary to how it may appear, I do not enjoy poking needles into my, or any one else's, child. I recently reminded Benji's pediatrician that I do not wish to partake in poking my child multiple times per week. I want to be his mom, not his nurse. That being said, I plan to roll out of bed at 7AM tomorrow and poke my kid in the arm because I am aware that as a parent of such a complex little bundle of joy, I can't really say I won't do something for him. Perhaps I'll utilize my government employee benefits that include reduced tuition in the future to return to school. Perhaps I'll just teach Benji how to do his own darn shots and insuflon port placements.

Soooo......round 57 of trying-to-balance-full-time-employment-with-raising-a-child-with-multiple-medical-needs begins....