Cindy that is so infuriating and it's just... health insurance companies are the devil, I hate them.

I have another update about Jay-it's good news. I don't know what happened but for almost 30 days he was pretty much unresponsive but now that he has shown improvement his improvement keeps making jumps. He can't sit up by himself but once he's had help getting in a sitting position he can stay in it.

He blew a kiss to his girlfriend.

He ate applesauce! So they are putting him on thickened liquids and thickened pureed foods. He still needs a feeding tube and he still has a trach but this is all really good news.

His girlfriend isn't going to be his son's legal guardian, the big issue is dealing with Jay's ex wife. Although contact with her will be limited- she violated her probation by getting a DUI with property damage and currently in jail. This is her 3rd DUI in 10 years so she's facing felony charges. Her last DUI was , I think Mom said 4 months ago. She was also driving with a revoked license.

askye, the news about Jay is great! msbelle, I'm glad that Mac texted back.

----------------

Cindy, I'm lost for words. How cruel this seems to be. I am so sorry for this.

----------------

All the normal Israeli and Palestinian people who just want to live their lives in peace and freedom with dignity are at the mercy of systems and people who want to retain and/or gain power.

I don't know what normal Israel or normal Palestinian means, but I hope that we've come to a more pragmatic point where it's clear that the options are either to live together, or continue to occasionally kill one another for whatever reasons. Each perspective has a range: living together does not mean that there will be peace and justice for all, and continue to occasionally kill one another does not mean genocide to either side. But I hope that the distinction between "we have to live together" and "there will never be peace here, might as well declare a war" will be clearer. Enough is enough.

(My sister's car was hit yesterday by a piece of what was probably an anti ballistic missile when she was driving back from her work at the hospital, after she stopped during a siren (if you're driving, you're supposed to stop the car, get out, lay on the road and cover your head for a few minutes). She's fine, but it was scary).

Shir, how scary for your sister. It would be really nice if the powers that be decided killing each other wasn't the best plan.

I don't know what normal Israel or normal Palestinian means

When I used it, I only meant everyday people. I apologize for my awkward wording, Shir. I am so glad your sister is okay. That is so frightening. I'm sorry she went through it. Was her car badly damaged?

***

We received a spot of good news. The hospital called and said, regardless of if we hear on our appeal or the doctor's Letter of Medical Necessity, and regardless of what we hear, the hospital is going ahead with C's infusion on Monday (with Remicade — the original med). Having the infusion Monday is important (he has one every 8 weeks and was supposed to have one yesterday). It gives the hospital and us more time to fight without giving his Crohn's more time to flare.

We are not to sign any waiver for it (i.e. we don't have to agree to pay if the insurance denies the claim). The hospital will continue to fight this, and will take it to state government review if need be. We still haven't heard from our insurance company case manager and neither has the nurse who called this morning (she's the clinical access manager).

DH works for the hospital. He heard from his employee benefits manager, and she said they'll press it from their side too. That means we're approaching them from three angles: as a patient/insurance subscriber (us); as a doctor/hospital; as a business that purchases group insurance from the insurer.

Hopefully, the vasculitis (which seems to be resolving) will not recur when we resume Remicade (he never had this problem when he was on it), but there are no guarantees. We could only single out the new med as the new variable, but that isn't the same thing as knowing it is at fault.

That sounds encouraging, Cindy.

will take it to state government review if need be

Glad to hear that. I hope it is not needed.

It's a win for the now, Laura, which I will take. I appreciate the breathing room, too. In January, when we ultimately caved to the insurance company, they pulled the whole denial of authorization at the 11th hour, too. They do it so you don't have time to mount a good appeal.

Glad to hear that. I hope it is not needed.

Me too, dcp. I told the nurse that my friend (that's you!) had sent me information on an external review and she said that's what the review board she mentioned involves. We don't want to escalate before we have to, though.

Should our appeal and the LOMN not be enough, I do think that the hospital is willing to put its money where its mouth is by floating this treatment will strengthen their argument that they believe this is the best med for C.

OMG, Cindy, what an emotional roller-coaster! Hopes & prayers that the evil insurance company will finally cave (and long-term, that our country will cease to be held hostage to these demonic, money-grubbing, M-Fers). And of course, that C will soon be feeling better.

Shir, I'm glad that you and yours are OK. Hope your sister won't have too many long-term effects from what must have been a seriously scary event. And that cooler heads will soon prevail in the whole situation.

msbelle, I'm glad Mac has made a small gesture. And hope he will continue (even if it's baby steps) to try to get his act together.

askye, your post with the good news about Jay didn't load before. That's wonderful.

Thanks, Epic. He feels pretty well, thank goodness.