Sara Update 53

81January 17, 2010

Hi Guys and Gals,

Well the drama continues to unfold…


Call from the case worker

Wednesday January 4th Hugh received a call from our health insurance case worker. She noticed that there was a change in the amount of nursing coverage we are to receive. Under the new plans created because of the Obama health rulings, Blue Cross is now only offering 360 hours of nursing a year…that’s an hour a day folks….and we’ve been having difficulty making it all work with 16 hours a day! Yah…we are still reeling from the shock.

There are cuts and then there are CUTS

Hugh had received their usual letter stating that there were updates to the plan the week before New Year’s. There are usually updates to the great plan we’ve been on for 20 years now every year at this time. He figured he’d get to it later. After the call he pulled the letter back out and went to the designated website…..guess what? That great plan we were on…. no longer exists. There is only one business plan now that is fully revised and “Home nursing” is no longer even mentioned…it’s just not part of the plan. There’s more…every ER visit will now cost $100 (Sara goes about 30 times a year), we will be required to pay 30% on her rental medical equipment, which for us will be something between $1200 to $1500 a month, and that big 360 hours of nursing we get only if we agree to pay 10% which adds up to about $1800. Of course the monthly premium is a big $200 lower bringing our payment to $3150 a month for our small family. And the kicker is that of course we’d be hit with all of these new expenses right when Hugh has been phased out of two jobs!


Looking for something better

He spent last week talking to brokers and we have yet to find a plan that will give us adequate coverage. That’s our first priority this week. We spoke with the mayor who hooked us up with the NJ state reps. They might be able to get us a waver that will provide a total of $12,000 a month which would cover one nursing shift a day and nothing else. We make about $15,000 too much a year to qualify for Medicaid and SSI. It was suggested by more than one person that we should divorce and then I would qualify for Medicaid….one of my nurses had to do this even though she and her husband still live together.

What’s got in to them?

You have to wonder why Blue Cross would do such a thing. Here’s how our conversation at the hospital sounded; Her doctors said, “Oh they are forcing this care onto the states.” “But the states are broke.” another one answered. Another doctor said, “Congress let the fox in the hen house.” And then, “This is all out WAR” “It’s how they will pay for all those Obama changes.” “They will make out like bandits.” “It will cause a lot more institutionalization. It’s more affordable for them.” I guess that’s the bottom line…after all they are just a business trying to be profitable…but at who’s expense?

Where’s the net?

Someone asked me last night, “Where is the net for people in your situation?” And you know what…we are no longer sure there is one.

The hospital again

We have stuff going on with the hospital too. I called a meeting with the doctors about getting Sara a trach…yah I know, you can’t believe it…neither can I really. But I went through some very scary stuff with Sara Ann in the fall and I felt I needed it for safety, also for her comfort level. She’s just been working to hard to breathe the last few months.


Hugh has many serious reservations that make a lot of sense. Like he thinks we are treating the treatments and not her. For instance maybe it’s all these heavy seizure meds that make her so logey that have also made her throat collapse more and made her skin more flaccid and her respiratory system weaker as a whole. He also wonders if working to breathe so hard hasn’t actually benefited her because brain injured children tend to breathe too shallowly anyway. He worries that her breathing will be come weaker with a trach.  However, he has said he will go along with it as he can’t be a team of one. It has neither of us is jumping for joy. The hospital would like for us to go ahead and get it done now and they said they wouldn’t let us out without getting our 16 hours of nursing. The procedures for everything involving her respiratory care will change. It’s all very complicated and it will take them 8 to 12 weeks of her living at the hospital while they train us. But we don’t feel comfortable going in unless we have the security of a good insurance plan in place. Also, I remember 5 years ago, when the insurance companies suddenly refused to give 24 hour nursing even to the most deserving families, which had always been the protocol in the past and there wasn’t anything the hospital could do about it. So I’m not really sure they can do much for our home situation.

Now on the new plan such as it is…

Our new plan started yesterday…the new version of the Blue Cross plan that we are so excited about (sarcasm intended). That means we have about 45 days of one shift of nursing each day until it runs out of the 360 hours….and then it….stops. No nursing,  would be impossible for us, at least the way everything works now.  But, hopefully we will be sitting snug with our new plan in place before that happens. So now, our nurse is doing the overnight shift so we can sleep. Hugh and I are spelling each other throughout our 16 hours with Sara Ann each day. I guess I’m glad he’s not working right now because I’m not sure I could do this every day on my own.

Find the bucks

Once we get the plan, we will start fundraising to pay for it, as it will exceed out income.


Back for O2

In the meantime, I’ve resolved that I better use this nursing to the best advantage. If I can get it organized I’m going to take Sara to get her some hyperbaric O2 before doing the trach. We think it’s important to strengthen her right now.

Note on Sara

She’s off Kepra (one of 3 seizure meds) and sooooo much more alert. Her teachers are ecstatic with the improvement. She’s bopping her button like crazy and letting them know what she knows. She painted a picture of a jumping dolphin with starfish, fish , octopus and turtle under water and sun and birds in the sky! While watching the cartoon Snow White in her stander, she turned her head all the way away from the witch and closed her eyes (she just hates her!) and she laughed and cheered when Snow White and the Prince got married!

God help us. Please pray for us.

Melissa, Hugh and Sara Ann

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