Oh nooooo, none of those things. I walked out into the hallway to a standing pond of water over the tile floor, into the kitchen, through the wall into the pantry. The spare room and baby room were soaked- stepping on the carpet made water come up over my feet. “Honey! Its time to get up” I called cheerfully to Joe. Poor guy, half asleep jumped up and inspected the scene. Before too long he discovered the culprit- the hot water heater was literally spewing water everywhere. The garage was full of water, my car was all wet and water was gushing into the wall and leaking into the house. He shut it off, and just started moving things- everything had to moved out of the rooms onto a dry surface we could find, framed photos, our computers, wood furniture, the christmas gifts I’d just wrapped (luckily in cardboard boxes, the only line of defense against the sopping carpet).

After getting Teo off to school, we called our repairman to replace the water heater and the carpet cleaner came out, sucked up the standing water, put down some anti microbial stuff (which actually smells nice, better than wet carpet anyway) started running some industrial fans under the carpet which will be there for 24-48 hours before they come back to replace the pad. So, been working from home today trying to be as productive as possible. Isn’t it always something?

That he’s almost 4 years old.

That my mom was right about how happy I’d be to document all of this somewhere Things like, our evening ritual. When he’s all ready for bed, every night he asks me “mommy, will you come to me in the middle of the night and give me a tiny kiss?”. Last night I said it to him “I’ll come to you in the middle of the night to give you a tiny kiss” and he said “no, mommy, come to me in the left of the night” lol

That this is the same kid lol
The first photo was taken this summer at Disney (notice the half eaten Mickey lolli pop in one hand). This is my (emphasis on my, this is a streak of Jenn if I ever saw it lol!!) kid alright!

Teo at Disney

Teo at the Carousel

Another thing she did was keep a shoebox of notes she made about the funny things we used to say as little kids. She’s urged me to do that for Matteo for so long and to this point I haven’t. But recently he’s been FULL of funny things- he’s getting to the age where he understands more, but doesn’t understand much, and is trying so hard to express himself in more complex terms. So, instead of a shoebox of handwritten notes, I carry on my mom’s tradition with today’s technology. I will no doubt be updating these with new ones soon. Enjoy-

Me: I love you Little. Teo: I love you Bigger.

Me: Go get a jello cup from your shelf in the pantry (Teo walks into the kitchen). Teo: (walks back in) There aren’t any jello cups. You’re wrong, right mommy? (wickedly happy) You’re wrong. And I am right.

Me: Did you have fun with Daddy? Where’d you go? Teo: The operation shop. (Joe explained they’d been to the alteration shop).

Teo: (on a recent drive) Look, a instruction site (he meant construction site).

Teo: (playing with his toys after school one day, he innocently lets this one drop to gauge our reaction) f*cking. f*cking. (a bit louder) F*UCKING. Me: you know you’re not supposed to say that word, right? Teo: Yeah. Me: Where did you hear that (knowing full well it was probably me. What can I say? whoops). Teo: Grandma… Me: (suppressing the urge to laugh) We need to talk…

“I had a conversation with my brother-in-law, Herman, last evening (7/10/10) over dinner about MedSolutions. He is a cardiologist. A patient was denied a procedure that my brother-in-law deemed medically necessary (to save his life). Aetna doesn’t call the doctor, it calls the patient because it is a way to avoid having to confront the medical specialist most capable of engaging in an informed discussion and from whom the test/procedure was requested.

Herman has a remedy for this. Get the name of the doctor who is denying the service and tell that physician his name will go in the patient chart as having denied the request and recommended against having the procedure/test. A little bit of liability changes the dynamic.

It should be noted that the cost to physicians is enormous to deal with the denial of service and that is also part of MedSolutions model. If the patient doesn’t know how to fight, and the cost to the doctor in time and resource becomes high enough, then you likely get neither making a stink or complaining.

MedSolutions business model is disconcerting. Cost management is one thing, denial of legitimate services is another entirely.”

Sometimes, when I’m lucky, it looks more like “I just wanted to see what would happen”. Matteo has been a crack up lately- starting stories with “One Uponce A Time” and singing “Tonight’s Gonna Be A Good, Good Night” lol

Yesterday, we’d all gone out into the backyard- Joe and I got some yard work done (actually I lounged under the umbrella with an Entertainment Weekly and gabbed on the phone with girlfriends) while Teo played in his water table in the grass. He was soaked when we came in for lunch so Joe stripped him down and then went to wash his (own) hands. There were a few minutes while Teo was alone in the kitchen…. we heard what sounded like running water in the kitchen. I looked up from the living room and Joe turned around to ask Matteo what he had just done- “I went pee pee in Bea’s (our dog) water bowl”. Yup, apparently any round water-filled container seems like a toilet to a three year old boy

Joe and I looked away, barely able to hide the fact that we were about to roll on the floor laughing!! Later, I had a stern conversation with Matteo about the “appropriate place to use the potty” and “wouldn’t it be awful if the doggy drank your pee”? The second “drank your pee” escaped my mouth I had to get up and leave the table before breaking into uncontrollable laughter

Even though things have been stressful, its been nice intentionally spending time enjoying our little boy. There is a LOT to enjoy!

A small piece of tissue was left behind in his surgery and it has grown into a small tumor, the doctor says its the size of a kernel of corn. He will have another MRI in 3 months, and depending on the size he will have surgery, or we’ll wait another 3 months until the tumor is large enough to be removed (apparently removing a small tumor is very difficult).

I can’t believe we’re doing this again. I’m doing a good job of keeping my humor and being patient with Matteo and spoiling the hell out of him. I think I’m staying as positive as I can be under the circumstances and I’m trying to push it out of mind… but at night, after he’s gone to bed, and we’re sitting here watching tv… I cant help but wonder what a second surgery will be like… what my life would be like without his smiling face. and I cry.

If you read one of my earlier posts about Matteo’s illness before his surgery, you may remember that his pediatrician ordered a CT Scan which was denied by his insurer, Aetna. Actually, the situation is a bit more complicated than Aetna just refusing to pay for the CT Scan, Aetna contracts with a company called MedSolutions who knows even less about Aetna’s patient- my (now) 3 year old son Matteo. MedSolutions is a company that decides when expensive procedures should be paid for by the insurance company or denied to save Aetna money.

It is the company which denied the CT Scan for Matteo because they were “unable to authorize the above procedure based on MedSolutions Head Imaging Guidelines. The clinical information submitted does not describe failure to respond to a month or more of physician supervised medical therapy, including prescription medication to prevent the onset of headache and to stop it once it starts, and/or medicine to decrease the frequency and severity of headaches”.

The letter goes on to say “The vast majority of headache patients do not benefit from advanced imaging. Headache is a very common complaint and in only a tiny percentage of cases is there a structural cause requiring separate treatment.”

The decision maker and sender of the letter for MedSolutions are “A Florida licensed physician Dr Bruce Ryan LeForce, Title: Physician Advisor Specialty: Neurology”, and signed Gregg P Allen, MD, Chief Medical Officer of MedSolutions, Inc.” respectively. I can only hope that their friends and families find this blog post and urge them to find a less evil line of work…

If I would have waited a month for my son to respond to medication my incredibly precious son would have died before his third birthday. My little priceless boy would have died because Aetna didn’t want to pay for what amounted to an $800 procedure. Unfortunately, he was an example of “the tiny percentage of cases” in which “there [was] a structural cause requiring separate treatment”. Shame on you Aetna for using a third party to make this kind of decision, and shame on you MedSolutions for providing that kind of service. This is an example of a broken system of thieves being allowed to make their fortunes at the expense of our health and well-being. I find the situation shocking, appalling, disgusting, irresponsible and abhorrent. Aetna, when will you stop denying life-saving procedures for small children? This is a prime example of why you shouldn’t deny a CT Scan- you never know if you might find a raquetball size tumor in a child’s brain- that’s what a CAT Scan is for, because otherwise we don’t know!

If we would have know, we would have known about the tumor almost 2 months earlier, we would have know that we’d be missing work, could have planned our 8-DAY hospital stay and Matteo wouldn’t gone into surgery under emergency circumstamces. All to save $800.

As most of you know, Matteo was very resilient and seemed to bounce back after he left the hospital. The days of recovering at home after his brain surgery typically had some variation of this: “Matteo, honey, you still have a booboo on your head, no somersaults/headstands/wacking yourself in the head please”. Despite the exceptionally large tumor, he didn’t need speech therapy or physical therapy, he was more perfect after surgery than before surgery.

But, there were some reminders of the trauma he experienced in the form of night terrors, in which he’d say things like “be careful” and “don’t hurt me” (those nights he wound up in mommy and daddy’s bed!). And on Christmas day when his little cousin innocently enough asked about his scar and he burst into tears- it was a reminder that he is still very sensitive to the whole experience, and I suspect in his little two year old mind, is still trying to make sense of it all.

That brings me to another update- he isn’t 2 anymore. Last weekend we were fortunate enough to celebrate Matteo’s 3rd birthday with many of our wonderful friends and family! In fact it was one of the biggest parties we’ve ever hosted with about 20 kids and all their parents. Joe, Teo’s dad, almost made me cry when he said a few words before we served the cake, saying that he appreciated everyone coming since he felt that this was truly a celebration of Matteo’s life.

My gorgeous boy is well and back to “school” (a Montessori pre-school program). I guess life is back to “normal” now except for the occasional night terror, and the thing that gives me nightmares these days- the mounting stack of bills coming in from the hospital each day. Oh well, a small price to pay for my irreplaceable boy!

carousel ride

Teos 3rd birthday

The CT Scan and removal of his sutures took about 15 minutes, but we were there for about 5 hours (challenging with a two year old to say the least). The skin had grown over the sutures so much that the nurses weren’t comfortable removing them and we had to wait for a neurology resident to come in and remove them while he was under for the CT Scan. We also had a bit of a scare because of some swollen lymph nodes, but they have since gone down (the resident thought they were swollen because the sutures were in so long).

Things are improving day by day. His incision is healing over and he asks about his head less and less. We are letting his hair grow out and will look like a wild man for a while, but I am ok with that. I’m ready to get his MRI out of the way early next year and settle back into normal life. Wow. What a ride!

Zero empathy and compassion for what we’ve been through. Total lack of understanding for what’s happening with this situation. I am so disgusted with the situation. I feel tapped. I want to punch something. Why is everything a fight?