Monday, June 5, 2006

Today Mike's not great. Really fatigued, not easily roused, weak, and slightly confused. What I didn't realize was that for the past week or so, they've been tapering off Mike's Decadron (steroid for the brain swelling). The last reduction in dosage was Thursday and since then he's been getting progressively worse - sleepy, confused, etc. So, today, Jaymie (N.P.) called the resident to come in and look at Mike.

His response? "I've seen him far worse. I'm not going to order a scan."

When I got in today (about 45 minutes after toolshed resident said we had nothing to worry about), mike's nurse Nicole (hot with glasses), the N.P. and I all together and examined Mike for barely a minute and we were all like, "Ummm... no. He's not right." So, Jaymie called Dr. Andrews who immediately ordered an increase in Decadron (steroid) through the IV and then by mouth later in the day. If he doesn't perk up by tomorrow am rounds, they'll do a CT scan on him.

Admission to Magee is happening Wednesday morning, not Tuesday afternoon - so feel free to visit tomorrow at JHN in 6606. I packed up his normal person clothes into a suitcase today and brought it to the hospital. (he'll be transported from JHN to Magee by ambulance). It felt really positive packing up boxers, jeans, and shoes - none of which Mike has worn in over 2 months. At Magee they have all sorts of creative ways to make people feel like people - including having them in street clothes even if they need a catheter in.

I talked with folks at JHN (Nursing clerk, N.P. and other nurses) about the whole "need to have a guarantee of 24 hour care for Mike to be admitted to Magee" thing. They were all like, "no no no.... just tell them he'll be cared for in the event he's discharged early. They don't expect you to have that all figured out in detail now. that's the whole point OF Magee - to do assessments to figure out what his needs will be upon discharge from the program."

In fact, they were right. I talked to Kathy Murray (from Magee) again today and she said we don't need any detailed plan - just our assurance that we have a support network in the event that Mike is sent home prior to the cysts being drained (which is an unlikely scenario anyway). I asked her if I needed to have researched all my options regarding facilities or private nurses or home nurses and she laughed a bit, "No no. We'll work with you on all of that while he's here. You'll have a case worker here at Magee who will outline all of your options given your current insurance plan."

In the meantime, I'm in the process of hooking up with a lawyer to help navigate the system. Cause between the nursing stuff, soc security, disability, blah blah blah - I'm overwhelmed to say the least.


Anonymous said...

ugh. still here thinking of you....day by day and at least the radiation is nearly over....glad to hear you're heading to the beach! who's brilliant idea is that? xoxox,t

Anonymous said...

Hi Danna. Glad to hear Mike is heading to Magee soon. My neice was there after her car accident a few years back. They were great. Mike will be in good hands there.