Of Robinul and Job Loss...

So two disappointing things to report today (Please pardon the somewhat bitter tone)

1. The issues with secretion thickening due to the Robinul have resulted in several de-sat incidents that have forced us to wean Ollie from the medication. In a couple of days, we are probably going to try again at 1/2 dose to see if that will help secretion amounts, but without the excessive thickening.

2. As of last Sunday, Bekka no longer has a job. Well, at least not one with benefits. Her FMLA leave was finally exhausted and being bound hand and literal foot by corporate policy, she was reduced to part time with the requisite pay cut. They have been wonderfully flexible with Bekka and her schedule, but time was not on our side. In many ways we never expected Oliver to make it this long, but he's been such a champ and an unexpectedly strong little boy!

There is a terrible irony in this story: We are pretty sure the only reason this happened when it did is because we called to ask about Bekka's status. We were trying to be proactive and make plans for ourselves and Ollie over the coming months and I asked Bekka to call HR to see where we stood. They hadn't the foggiest idea. It took them over a week to figure out her leave balance. She confirmed it one night by sitting down with all her pay stubs and adding up time worked.

Unfortunately, they let Bekka know Friday morning (6/5) that retroactive to 5/31 she was part time. One really wonders that had we simply played the military's game of "don't ask, don't tell",
if we might have gone indefinitely before someone figured it out. Who knows!

Would that have been "moral"? I don't know, but we are the ones with a terminally ill child, so our judgment might be clouded on the question.

It should be noted that all of Bekka's local coworkers and her entire management chain have been nothing short of fantastic. Wonderfully warm and supportive people all and all equally disappointed in how things resolved! This is strictly a corporate issue and it's not unique to Stride Rite. We aren't angry with Stride Rite. We think they have been more supportive than many companies would have been in the same position. We ARE angry about the difficulties involved in this entire process when we really just want to take care of our little boy.

So where does this leave us? Honestly, things wouldn't be so bad if I didn't work for the state. Working for a government that some sources now rank 50th in the nation in support for worker's families, it's actually better for us to COBRA Bekka and Ollie at the cost of $671 a month out of pocket than it is for us to put them on my insurance.

Yep. You read that right.

It would be a little cheaper (but not a lot!) to put them on my insurance each month, but the loss of benefits is too large. The things not covered by the state or at higher costs are legion. If you had any misconceptions about the "great benefits" offered by the state, you can put those to bed now.

It will be interesting to see what happens to the state employee base when economic conditions begin improving...they made multiple "adjustments" to our health plan this year that resulted in the doubling of deductibles and many copays while also increasing the costs for family coverage. It's quite obvious state employees aren't resources - they are the proverbial cogs in the machine, and it's doubly obvious they really only want healthy single people working there now.

So who wants to step up and tell me just how awesome the American medical and insurance system is right now? Bueller? Bueller?

For happier news, see the post I'm about to make...

Robinul to the Rescue (so far)

This past week we began treating Oliver with Robinul in the hope of controlling his increasingly high secretion volume as we had gotten to the point of hourly suctioning on bad days. Robinul is a very powerful drug with numerous side-effects and some patients tolerate it better than others. In some SMA cases, you get only side-effects and no secretion reduction.

It's normally in tablet or inject-able form - needless to see, we aren't giving the poor little guy twice daily injections! Instead, a higher dose of the inject-able form is given via the g-tube.

So far (fingers crossed), he has tolerated treatment well. His secretion volume is way down, and while mucus is thicker, it's not so thick that cough assist and suction hasn't been able to remove it. In addition, he's not been constipated (one of the bigger worries).

We hope this response continues as it's greatly improved Ollie's (and mommy and daddy's) quality of life in a short time frame.