Mystery boy

Jack is such a mystery. He's had such a miserable week and I can't really tell what is wrong with him. His oxygen sats are fine, but his heart rate is elevated and "miserable" is written all over his face. It's difficult enough having a medically fragile kid, but having a sick medically fragile kid who can't tell you where it hurts is just so hard. I can't imagine not being able to communicate my aches, pains, needs, etc. I suppose Jack communicates them through his body language, but we are just guessing at what might be wrong. Jack probably just wants to yell at us and tell us that we are guessing all wrong - if only he could. You remember how stressful having a newborn baby is because they can't tell you why they are crying? That same sense of helplessness has remained with me for the last nine years when it comes to trying to figure out Jack. Hopefully, he'll start feeling better soon.

TGTomorrowIF! I'm so tired. I've slept through my alarm every day this week .... which means everyone else overslept too (since I'm their alarm clock). It's been a week of morning madness.

my sick boy

On the Eric front:

Even though Eric is doing much better in school, he still does NOT like school. I was reading something Eric's teacher gave me that listed characteristics of the "bright learner" versus the "gifted learner". According to this particular comparison, a bright learner enjoys school and a gifted learner enjoys learning. This is so true when it comes to Eric. He just doesn't have time for school, he only wants to learn what he wants to learn, when he wants to learn it. The next twelve years are going to be a real challenge, I can tell already. The other day as we were walking into Eric's school he said to me "let's just turn around and leave mom, no one will notice". As if we were prisoners escaping from jail. We have a friend who homeschools her girls and Eric wants to know why I don't homeschool him. Yeah, right! Like I have patience for that.

Wishing you all a happy Friday.

Interesting

Interesting bit of news ... when the person from Mark's HR department asked their UHC rep where the exclusion they came up with is found, the response was, in effect -- we can't share that information with you. What the hell!? Why does UHC think it's "confidential" information they don't have to share with their own customer? Especially in light of the fact that the second level appeal is with Mark's employer. You'd think they would be allowed to know the basis of the denial they will be asked to overturn. Mark's HR person told him that we just need to go ahead and appeal. I'm really glad I have an attorney involved (one who knows this area of the law inside and out). The appeal hasn't been filed yet, but, hopefully soon (before I have to get pushy).

I heard back from Jack's ophthalmologist: "if you think he is using the bifocal, then I would continue it, particularly if he is looking at things both near and distant. In some children who spend the vast majority of their time looking only at things within arm's reach, we use single lenses adjusted to focus at near. To make a decision it is important to know what the patient does in real life."

Real life -- that's the one little detail the ophthalmologist here didn't take any time to find out about. Looks like we'll be making that trip to STL. *Sigh*

An Author or a Writer?

One of my favorite books is “Kitchen Table Wisdom, Stories that Heal” by Rachel Naomi Remen, M.D. It's one of those books you can pick up and read a chapter or two at a time, in no particular order, and over and over again. As you have probably figured out by now, I'm not one to read novels or fiction -- I like the real stuff .... information I can apply to my own life. You'd think I'd like escape every once in awhile into a world of make believe. But, I'm too much of a realist. In the preface of her book, Dr. Remen describes how, when setting out to write the book, she quickly discovered that she is an author and not a writer. She says writers are people who are born to write and an author is someone who was born to do something else and then writes a book about it. I'd love to write a book (or two) some day. Although, I'm not sure which category I fall into. But for my experiences with Jack, I doubt I'd have much to write about. So, I guess that makes me an author? Regardless, maybe ... someday ... I'll write that book.

We had a rainy and relaxing weekend. A friend of mine and I took Eric to the Arizona Science Center - a place I had never been to before. It was nice to be able to spend some time with just Eric, as that doesn't happen too often. He will tell you that he had a great time up until the end. When we went to the gift shop for the all important souvenir -- it was closed. He was deflated. It's so tough being a kid.

Action shot!

Kristi worked today and, unlike most Sundays, I didn't go into the office. Kristi had Jack up in his wheelchair playing with his computer. I grabbed my camera and shot a short video clip so you can see how Jack uses his switches in conjunction with his computer.

Photo and video editing at www.OneTrueMedia.com

I haven't heard anything regarding the status of our appeal with UHC. I'm going to follow up with the attorney tomorrow. If I had done the appeal myself, I would have requested an expedited appeal. I'm not sure the attorney is going that route because he wants to get information from UHC. I also need to follow up with our Department of Developmental Disabilities as they should have approved the eye gaze system by now. I'm losing patience all the way around with this whole thing!

I was able to get Jack scheduled with his neurologist in October and she is also going to schedule a sleep study for Jack (since our pulmonolgist is no longer at SLCH). Jack's tune-up (as I like to call it) will involve appointments with 4 doctors, an overnight sleep study, a brochoscopy and likely a EUA (examination under anesthesia) with the ophthalmologist (done the same time as the broch). That is, if I actually decide to make the trip to STL.

That's the news from here. I hope you all have a productive and peaceful week. Enjoy the moment.

Friday FFT

Friday’s Food for Thought:

There comes a time in the spiritual journey when you start making choices from a very different place. You know you’ve touched the beginning of spiritual maturity when you review a choice considering five things: Is this choice in alignment with truth? Is this choice in alignment with health? Is this choice in alignment with happiness? Is this choice in alignment with wisdom? Is this choice in alignment with love?

And if the choice lines up so that it supports truth, health, happiness, wisdom and love, it’s the right choice.

Life Lessons for Loving the Way You Live

**I would add that for someone like myself, who also strives to make faith based choices - if a choice is in alignment with truth and love ... I'd like to believe that it's also in alignment with my faith and, therefore, the right choice in that regard as well. I'm no where close to achieving "spiritual maturity" as defined by this book -- but, I like the concept.

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Have a great weekend!

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In case you are wondering ...

Yes, there are a few doctors in this City who I like and whose care I am comfortable with:

*Neurologist (he trained under Jack's STL neurologist at Washington University and she referred us to him)

*Orthopaedist (the reason we had Jack's spinal fusion surgery in STL was not because I didn't trust our Phoenix ortho, but because I'm comfortable with St. Louis Children's Hospital and I'm not comfortable with any of the "Children's" hospitals in Phx)

*Pulmonologist (in my book, there is no one who is as good as Jack's former STL pulmonologist, but our Phx pulmonologist "gets it" and he is wonderful with Jack)

*Pediatrician

*Endocrinologist -- didn't have one in STL, so no one to compare him to

Not comfortable with:

*ENT (Jack doesn't have a complicated airway, but he has had airway complications related to his anatomy (right aortic arch) and the ENT here doesn't express the same concern or interest that our ENT in STL does)

*Ophthalmologist (see previous post for the story there)

*Children's hospitals (The limited experience I've had with the Children's hospitals here in Phx has not been positive. There is no comparison to St. Louis Children's - which is ranked as one of the top 10 Children's Hospitals in the country)

*Biggest issue is no coordination of care. I have to run all over the valley to see different doctors who have privileges at different hospitals, who don't talk to each other about Jack, and who won't coordinate procedures. At SLCH, I get everthing done in one building, with doctors who share information about Jack and who always work together to perform their respective procedures or surgeries on the same day so Jack is under anesthesia only once.

I haven't heard back from Jack's STL ophthalmologist yet, but today I scheduled appointments with all of Jack's STL docs for October. I'm sick to my stomach just thinking about making the trip from Phx to STL. It's not a given we are going back, but I want to give myself the option. We couldn't get in with Jack's neurologist -- she's already booked through November, but I emailed her and she usually gives her scheduler permission to fit us in.

Yes, my expectations are high when it comes to doctors and what I need from them, but it's only because I've experienced some of the best in STL. I just can't force myself to settle for less than I'm comfortable with. Sure, it would be so much easier to not have to travel 3000 miles round trip to see doctors, but I've never taken the "easy" road, so why start now. Fortunately, I have a husband who accommodates my craziness and who is always willing to make the drive to St. Louis. It's not something I could do on my own.

Keep in mind that Jack is a very medically involved kid. In all fairness, I'm sure the doctors/hospitals in Phoenix are fine for the average kid who only needs a specialist and/or hospital on rare occasion.

That's my story and I'm stickin' to it!

Weekend News

Jack and Eric saw the new ophthalmologist on Friday and my feeling walking out of his office was one of disappointment. Several comments he made throughout our appointment didn't sit well with me. Basically, the guy was arrogant and rushed. I can put up with arrogance, but I won't put up with a doctor who doesn't want to spend the time with Jack that he needs (or, more accurately, one who feels put out because Jack takes more time than his average patient). Without asking a single question about Jack's daily life, such as where he spends most of his time and what he looks at (distance wise) - he just made the assumption that Jack doesn't use his bifocals and therefore, wants to get rid of them. Notwithstanding the fact that Jack has had bifocals since he was 2 years old! Jack has artificial lenses because he had congenital cataracts, so he has one set distance he can see with his lenses (unlike normal lenses which can adjust) -- therefore, it's important to find the distance Jack's uses the most (ie, from his bed to his TV) and then make corrections with glasses to accommodate distance and close-up. He made the comment that he's seen enough kids with bifocals to know that Jack doesn't need them. I had to bite my tongue not to tell him that our ophthalmologist in St. Louis has probably seen as many or more patients like Jack and I think he knows what he is doing too. On top of his attitude he had no bedside manner. Why go into pediatrics if you are going to act grim and serious with your patients. Maybe it's just Jack that brings that out in doctors, but it irritates me that I have such a difficult time finding pediatric specialists in this City who will talk to Jack like he is a person. I'm going to email Jack's STL ophthalmologist and get his take on the changes this guy wants to make. He didn't make any big changes to Eric's prescription, so he might be okay to follow Eric, I'm just not sure about Jack.

In other news, I received an email letting me know that one of our local news stations wants to do a story on Jack's room in March. I told the Room for Joy people they are really forcing me out of my comfort zone. My medium of choice is the written word, not the spoken word. Ad libbing is not one of my strong points (and the reason I'm not a trial lawyer). They say television adds 10 pounds to a person, so I'm in trouble! I have 2 months to lose at least 20 pounds. I guess the chocolate croissant and latte I had this morning will be my last for a while. Bummer.

This weekend was another weekend of Irish dance. Mary has moved up a level and her competition is much tougher. She didn't place in her individual dances, but she won first in her team dance (Ceile). I mentioned to her that it might help if she practiced on occasion (she, of course, didn't like hearing that).

A few pics from this weekend:

Eric and his friend Orla (who competed in her first Feis this weekend)~


Jack hanging out on the couch watching football ~





Mary showing off her new solo dress ~

Have a great week!

Short Update

It seems that the exclusion UHC quoted in their denial letter doesn't exist in Mark's employer's plan. Imagine that ... an insurance company making stuff up! We don't even find an "exclusion" section in the plan summary. We find a "what's not covered" section and devices and computers to assist in communication are NOT found anywhere under "what's not covered". The attorney who is helping me said it wouldn't be the first time that UHC has cited to a policy exclusion that isn't part of the plan at hand. Mark asked his HR department if they could find the language quoted by UHC in any of their documentation - we haven't heard back from them yet. It's just a bunch of b.s. and now I'm angry. I'm angry about the amount of time and lost billable hours I've devoted to resolving a bogus issue created by an insurance company. They should pay me for the time I've spent on this at my hourly rate. Something like this should be able to resolved by a simple phone call and shouldn't require a full blown appeal. Regardless, I'm just going to let the attorney handle the appeal. UHC and Mark's employer could both stand to squirm a little.

In Eric news, I talked with his teacher today and she said he is a PERFECT fit. He is not having any trouble keeping up with the work and there are NO behavior issues. She said he does like to talk, but she has a whole classroom of kids who like to talk. Bravo for good news!

That's the latest and the greatest from the Schrooten Ranch.

Have a great day!

Denied

Yep, our insurance company, who I affectionately refer to as United HealthcareLESS -- denied Jack's eye-gaze communication device (technically called a SGD - speech generating device). UHC claims that "devices and computers to assist in communication and speech" are excluded from our plan. Apparently, either UHC or Mark's employer wrote it out of their plan sometime between 2003 - when Jack's first communication device WAS covered -- and now. I think I've figured out how things work. Each year the insurance company and the employer sit down and look at those procedures and/or equipment that were covered and which cost them a lot of money and then, they proceed to write them out of their plan.

Not that long ago, receiving news that something this important for Jack is not covered by insurance would have made me so angry I couldn't see straight. But, I've learned over the years that "que sera, sera" and, therefore, there is no sense in getting so worked up that I can't function. I really believe, if it's meant to be, it will happen. Besides, being angry just saps too much energy and my reserve is depleted.

While I'm not angry, I'm not throwing in the towel either. We have a couple of options. First, we move forward with requesting that our Department of Developmental Disabilities (DDD) pay for the device. They should cover it (I hesitate to say that they will cover it). But, as I mentioned before, if DDD pays for it, they own the device, we don't. Not my first choice, but livable. While we get ball rolling with DDD, I will be appealing UHC's decision. A fellow sorority sister of mine gave me the name of an attorney whose entire job is appealing denials of SGDs by insurance companies. The best part, he doesn't charge for his services because he is paid by the SGD industry. He and I already exchanged several emails and information today and boy, does this guy know his stuff! I'm confident that, in the end, UHC will be paying for Jack's eye-gaze communication device. Hopefully, DDD will approve it so we can get it right away, but when we win our appeal, DDD will get reimbursed and we will own the device.

Another day .... another battle. However, the difference today compared to a couple of years ago is that today I'm more informed, I'm more patient and I don't take it personal. Jack will get what he needs, not necessarily my way or in my time, but he will get it.

(I'm sounding so in control of my emotions, I'm scaring myself! Don't worry, I can still get angry when I really need to.)

Onward we march!

Take Two

Jack had his second radiation treatment on Wednesday. Half the dose, half the time. He tolerated it great, but was "yelling" at me and giving me the pouty lip when it was over. I guess the novelty of being in a giant tube that is making a lot of noise (not to mention shooting potent beams of radiation at you) wore off. The radiation doc said to give it a few months and if he's still producing a lot of saliva, we can try another treatment. I think I'm done radiating my kid. Whatever we get from this treatment, I've resigned myself to live with.

After we finished that appointment, we made a stop at the ortho's office for a foot x-ray. There were a couple times last weekend when I touched Jack's foot that he started crying (big huge alligator tears) and with his bone issues, I decided we should probably make sure he didn't have a fracture. The good news is the ortho couldn't see a fracture. The bad news is, the ortho couldn't see much of a bone at all because Jack's bones are so osteopenic that you can see almost no white on x-ray. *Sigh* It's really scary to see Jack's x-rays. Makes you afraid to touch him.

On the Eric front .... so far, so good with the new school. I was worried when I saw a red card and a green card in Eric's backpack as I thought, please .... no more red light, green light crap. Thankfully, the cards have nothing to do with behavior, they are to let the teacher know if Eric is ready to be tested on his spelling words. The biggest difference with this new school is lots of homework. Mark made the comment tonight that the math was way beyond a Kindergartener. I reminded him that this was a gifted program. Let the fun begin!

Happy Friday and have a great weekend.


The boys watching TV together this evening ~

My Boring

I have to laugh when I think about what I define as boring. What I consider boring, ordinary and mundane today, had me in a tailspin not too many years ago:

“What do you mean I have to take this plastic tube and put it in that hole in his neck!”

“You mean I have to suck the snot out of his lungs and collect it in that container!”

“What the hell am I supposed to do when his oxygen saturations plummet to 80 and he’s turning a lovely shade of gray?”

“How am I supposed to get that machine from point A to point B?”

“He’s not legally blind, he can see!”

“You’re not turning up those ventilator settings are you?”

“Help, the g-tube fell out and stuff is gushing out of that hole in his stomach and going everywhere!”

“Are you kidding me?”

Today I can change out a trach; replace a Mic-Key button; suction snot ‘til the cows come home (and empty that disgusting container); trouble shoot a ventilator; bag my kid and hook up the oxygen with my eyes closed; load Jack and his portable PICU in the car in 20 minutes tops and get anywhere we need to go (including cross country); and recognize that those amazing eyes see more than I ever will. No kidding.

It just goes to prove that we humans can adapt to almost anything as long as we have consistency. What created chaos in my life just a few years ago has become my normal. God knows I fought making this my normal for a long time and part of me hates to acknowledge that this is my status quo. But, when you are rounding the corner on ten years of this way of life … you don’t have to hit me over the head with a ventilator for me to get that … this … is … IT.

I’m okay with the status quo because I really don’t need any added chaos to take IT up to the next level. I’m content right here … lying next to Jack … holding his hand … and listening to Raffi (and that darn ventilator!)

A Quiet Heart

It seems when things are going well, the words don’t come. It’s in times of sadness, pain or anger that the words flow so freely from my heart. These days, my heart is content and quiet. Quiet is good … it’s also boring. It’s times like this, that I question this whole blogging thing. Sure, I can always write about the mundane details of our day to day lives, but really, how interesting is that? I usually do my best thinking when I’m driving to and from work with my iPod blasting my favorite music through the car speakers. Incidentally, my music of choice these days is Chris Tomlin – his version of Amazing Grace (My Chains Are Gone) is beautiful and intensely moving. My drive time is usually when I mentally draft most of my “blog thoughts”. Yet, even with the spiritual music of Chris Tomlin to reflect upon, nothing is happening upstairs (at least in terms of creative thoughts). I’m certainly not looking for trouble just to come up with something profound to say. Nor am I sure what the point of this post is. I guess I feel a responsibility to have something to offer to those of you who come here to read. Then again, maybe a simple Jack update, a picture or two and an occasional video clip of my silly Eric is all anyone shows up for. I don’t know … you tell me.

Because I’ve nothing profound to offer, I’ll share a few mundane details of everyday life.

It’s another busy month of appointments. Jack has his second radiation treatment to his salivary glands next week. I’m really nervous about doing it, but the consensus is that the first treatment didn’t help at all. My fear is that the second treatment will go too far and Jack won’t have any saliva production – which is not a good thing either. The decisions are just never easy. Jack and Eric have an appointment with a new ophthalmologist in two weeks. This will be the third ophthalmologist I’ve seen here in Arizona. The previous ones haven’t been bad, they just haven’t been of the same caliber we get at St. Louis Children’s Hospital. Jack really needs to be followed closely because of his congenital cataracts and subsequent lens implants and since we didn’t go back to SLCH last summer, I thought I’d give this new guy a try. I haven’t decided yet if we are going back to SLCH this year. I’d rather not, but I also want to keep the St. Louis docs in the loop in case a serious issue comes up with Jack, as they are the only docs I trust implicitly. We also see the orthotist this month for adjustments to Jack’s DAFOs and to see about getting different hand splits. In non-medical news, the kids start back to school next Tuesday and Eric will be starting at the new school, with a new teacher. Soccer starts up again this month for Eric and Mary has an Irish dance competition one of the weekends this month (thankfully, it's here in town).

That's our month in a nutshell. Now, it doesn’t get any more exciting than that, eh?!

Have a wonderful weekend.