Tuesday, July 08, 2008

Final Weeks of Summer Vacation

Believe it or not, my kids only have three weeks of vacation left before they start back to school. Our school district is year round, so the summer breaks are short and the Fall and Spring breaks are extended. Since we don't have the luxury of spending our summers traveling from one vacation destination to the next (who does?), the kids are bored and ready to get back to school and their friends. We are contemplating a trip to Disneyland in August or September, but the question then becomes ... do we take Jack? It's not that we don't want Jack with us, it just changes the dynamics (exponentially) if we take him. If we decide not to take Jack, then Mark or I have to stay home which defeats the whole idea of a family vacation. Simple decisions become so much more complicated when you have to travel with your own PICU in tow.

The insurance "fun" has already started with our new insurance company. I received our first denial for home nursing care for Jack. Aetna claims that home nursing is not a covered benefit. Funny thing is, I've got a copy of the Plan Summary and right in black in white it says:

The Plan covers the following specialty and outpatient services, subject to applicable copay and any limitations shown in the “Summary of Benefits”:

Home health services provided by a participating home health care agency, including:

- skilled nursing services provided or supervised by an RN.

Not sure what plan they are reading, but it seems to me it's quite clear that home nursing IS a covered benefit. I try not to allow myself to get angry over this kind of crap, but it still frustrates me to no end. I don't risk losing my nursing care over this bogus denial because Jack's nursing is covered by our State's vent dependent program (Medicaid). I don't really have to appeal this decision because we will continue to get nursing. However, it's the principle of the matter and just like with Jack's eye gaze communication system, even though Medicaid will pick up the tab, I refuse to allow insurance companies to get away with their lying and cheating ways. I'm sure after I point out that home nursing is a covered benefit, they'll find another basis on which to deny nursing. I'm going to beat them to the punch and address the most likely basis for denial in my appeal. More than likely the next basis for denial will be that Jack's care is "custodial" - ie: he doesn't required skilled nursing and that basically anyone can provide his care. You think I could drop him off at KinderCare and they'd watch him for me? Ignorant physicians stand in the position of medical director for these insurance companies. When we were in St. Louis the medical director for CIGNA asked me why I couldn't just schlep Jack and his vent to our local daycare. Seriously?!

Speaking of family outings, Mark and I are trying to be more committed to getting Jack and the rest of the kids out of the house at least once a week together as a family. There are many excuses as to why we can't take Jack out, but we've just got to push past them and do it! Jack needs to get out more, especially since his lame mom won't put him in school. We went to the movies this weekend - we took Jack and Eric to see WALLE (Hilary and Mary saw Hancock). Here's Jack checking out his Dots:

and Eric's sweaty hair-do:

That's all I've got from here. Until next time . . .

Smile and the world smiles with you


julie w said...

Oh Ann, I just want to weep when I read of nursing issues. I mean, how stupid - leave Jack in Daycare - yeah, right! Grrrr!
Your holidays are different to ours, our kids still have another week in school then they get a six week break - I've been busy planning trips out we can do together to keep them entertained (easier now Sam is off the O2).
I sense your frustration about the Disneyland trip, the logistics of organising such a trip would be a nightmare. If you could get the other family members to agree that you don't do the parks everyday would that work. Maybe you could take turns to stay at the hotel with Jack for a couple of days while the others do the parks then plan something that you can all do together on the other days. Sorry, probably not much help. ((((HUGS))))

Anonymous said...

three weeks?? that went by fast!
I had to laugh about the CIGNA director. Our MD (CIGNA)suggested paying a babysitter to care for Max.
Looking forward to seeing pics from your ventures out and about:)

Sarah said...

Sorry to hear about the insurance issues. I know it's stressful switching. In some ways, I'm sure you wish you could just hook up a supervisor from your old insurance with a supervisor from the new insurance.
Good for you in committing to doing family outings once a week. It's hard work, but it's worth it.
Disneyland? Disneyland? HELLO!!! I would LOVE LOVE LOVE to watch Jack while you guys "park hop". I would love to meet you all, and I'm sure Malakai and Eric would get along swimmingly! Email me and we can talk details!

Dana said...

My mother- in-law went to DisneyWORLD in FL. She was in a wheelchair. They will give you a pass for ride preference. 50% of the rides were wheelchair acessiable. I'm guessing Disneyland is similar. Call and talk to someone. I'm sure it's the flying that is the headache.
It may be worth it
If we had the money I would ask someone to come with us that might be willing to sit with Jack in the hotel room when it was too hard to take him out. Then as payment you pay for this person to get to go to Disneyland. They could have free time when Jack is out with you.
Insurance, is a hugh headache. Good for you for holding the insurance companies accountable. Keep fighting!
Good luck with the trip planning. Have fun!!

Rachel Marini said...

Hi Ann,
I've been thinking about you as we are on 'vacation' for the first time with Gabe. I only wish it was more of a break from the norm (isn't that what a vacation is?) :)
Anyhow, I too was very leery of taking Gabe with us on vacation, not that I wanted to leave him behind, but because it is SO much work to take him ANYWHERE. As you know!
Today I was sitting at a table in the waterpark tearing up because of the simple fact that Gabe can't DO anything. My husband said I need to remember he is not a normal kid and can't just do normal kid stuff. That is the hardest thing to deal with. Among other things. My heart was broken over something as simple as wanting to take him on the lazy river.
Tonight we ventured out to the mall... Gabe's first time ever, with all the girls (me, my girls, nurse Lisa, her 2 teenage girls). Gabe actually did very well. My biggest fear of taking him anywhere is him becoming unstable and having to bag him. It happens just about every time we go out somewhere- very hard. I can't wait til he is more stable. We still carry bag, oxygen, sxn, monitor, back up everything, etc.
I just have to wonder, How do other parents do it?! How did I become part of this 'club'?? I didn't ask to join it. I hope I don't sound too self-pitying but this vacation has reminded me just how different Gabe is.
How do you do it? Why do people stare at a ventilator like it's a dangerous foreign object? Ugh. Also, we didn't bring a night nurse, so... that job is ours... fun. No sleep on vacation!
Sorry to have written a novel. I am just hurting tonight and know you can relate.
Have a wonderful week with Jack.

B said...

Ann -

We took 2 nurses on vacation with us a few years back. We had the timeshare, so we used 2 years vacations to get them their own condo. It worked out well, since they took Will overnight to sleep for the night nurse shift, and the day nurse brought him back in the AM. However, we were close enough to drive. Unfortunately, the nurses would not deviate from their 10 hours a day workweek, which kinda annoyed me.

We are planning on Disney in FL at some point, and we are taking Will. No vent, but trach and diapers :) which is also an issue. The key is to stay at a on-site hotel, so someone can go back to the hotel on Disney transportation if it becomes to overwhelming for our kids.

I agree that the principle of the primary insurance paying for things is important. We too have Medicaid as a backup, and I really hate when providers say things like "we'll just bill to MassHealth" since they will cover it. MassHealth (our medicaid) is supposed to re-bill to the primary carrier and fight for them to pay, so I don't see as much issues as you are. Good luck with that frustration.

Betty said...

Ann - that was Betty from the trach boards on the previous reply. It hit enter or something before completely typing my name.

Faith said...

Ahh..that's why i like Jack so much- Dots are my favorite too!!!! I think that's great you took him to the movies- did the vent make a lot of noise? I guess if it's gonna WALLE is a good one to do it at!

Hmm..yes the insurance thing drives us all nuts. 8 of the 14 months Faith was in the hospital were waiting for nursing (through Medicaid or course..) we have Kaiser, who will not cover PDN, the bill for the 8 months alone was 2 mill. Very cost effective, isn't it. :) Oh to change the world....
Thanks for fighting!