Monday, July 5: Update

Medicaid, Social Security and pharmaceuticals were the topics of the day. We started down the winding road of bureaucracy and red tape as we learned the financial mechanisms to care for children with ongoing disabilities. We only caught a glimpse of it. We didn’t like it.

The internal struggle we have now is coming to grips with possible realities we are hoping against: to qualify for these programs means that Claire has not made the recovery for which we are holding out hope. This is contingency planning at its emotional worst. While it is financially wise for us to do, we don’t like it and we don’t like the implications. Nobody wants their child to be eligible for Social Security benefits before age 65 or to automatically qualify for Medicaid for disability reasons.

But nobody wants this to happen in the first place. It’s the hand we’ve been dealt and this is a part of the process, an area of education we never wanted to receive. So we approach this step as a bridge to Claire’s recovery. Like the G-tube and ventilator, we hope that Claire’s qualifications for these two programs will be temporary. We hope the day she is disqualified from them comes soon. I can’t imagine another time I’ll have the opportunity to celebrate someone not giving us money. We’ll party it up big.

Part of he road to that recovery also deals with Claire’s reliance on the meds. We opened up this discussion with the doctors again today. I’d like to see a more proactive approach to Claire’s pharmacological strategy. We have been trying to strike the balance between administering drugs that stimulate and drugs that calm her agitation. The problem is that there are strong sedation effects with the calming meds. So we are simultaneously waking her up and putting her back to sleep. I don’t think she is taking too kindly to it. So I asked the doctors to start backing down on the sedation drugs so we can see how she responds. We cut her Ativan in half for tomorrow morning and will discuss additional tactics at tomorrow’s Care Conference.

We have a lot of questions for the conference tomorrow. We are going to meet with the nutritionist to discuss a more complex diet instead of the straight Pediasure nutrition she’s on now. We are also going to discuss continuous feeds through the night pursuant to a suggestion we received in the comments. We’re looking forward to the meeting tomorrow and hope to have a lot to report.

Claire had a good day today. She had a great night of sleep last night. We hope tonight starts a pattern of good sleep.

Thank you for your support and prayers. We hope many of you got to enjoy the day off from work today. If you didn’t, we hope everyone else didn’t rub it in too much.