Thursday, August 6, 2009

Since we've been home

Steve's condition
Steve is continuing to catch up on rest. It's definitely more peaceful at home, but he's also adjusting to a huge increase in Decadron, the steroid he takes to help control swelling and symptoms of the tumor.

Dr. V, the attending we saw Saturday through Monday, wanted to try 16 mg a day, up from 8 mg, to see if it helps with Steve's weakness. The only difference we've noticed so far is stronger voice (a wonderful thing to hear) and some difficulty sleeping.

He did sleep well last night, though, and had a nap this morning.

His arm swelled significantly again yesterday; today it's more normal though still puffy. Yesterday our amazing massage therapist worked on him and his arm for about an hour. Steve was fast asleep when Trish finished.

Transitions from the bed to the bedside commode aren't smooth. He requires two people at all times, and even then I'm nervous. The hospice aide is a great help, though, and she and I make a good team.

I've also hired a sitter (and former nursing home aide) to help me three nights a week. I won't be able to take off while she's here, but she will provide consistent help and give me some time to focus on Cooper and Katie at night -- especially important now that school is about to begin again. The sitter fees are an out-of-pocket expense, which we'll able to pay for through the generosity of all the Kick the Damm Spot donors.

Steve receives a steady supply of oxygen from an oxygen concentrator. It's supplied through a vendor that works with our hospice agency.

A light came on this week indicating that the oxygen wasn't pure enough. So late yesterday, the vendor delivered a new one and said the old one had a cracked cylinder.

About two hours after using the new one, an awful high-pitched beeping sound began, and a red alert light was on.

I turned it off, let it rest and turned it on again. Thirty minutes later, the beeping began again.

So I turned it off and hooked Steve up to one of the backup tanks -- great for travel or emergencies but not ideal for a night of restful sleep. He's on 5 liters, which empties a tank in about two hours.

I called the vendor for help. An on-call driver returned the call. He sounded sleepy. I described the problem. Then he sounded sleepy and grumpy.

I told him that I didn't want to have to wake up every two hours to switch the tanks. He assured me that one tank would last six to eight hours. I told him that, in my experience, that wasn't accurate.

He sighed. He was quiet. Then he agreed to drive a new machine out.

After I hung up, the supervisor called to check on the status. I told him the driver would bring a new machine, but that he wasn't happy about it.

The supervisor said he'd call someone else, who lived closer, and apologized for the rude customer service.

By 11 p.m., a new concentrator was delivered by a cheerful driver. The machine works really well.

More guests
Longtime friend Matthew, who currently lives in Florida, spent last night at the house. He's on a visiting tour, catching up with family and us before school starts. (He's a newspaper-reporter-turned-guidance-counselor.)

Steve and Matthew this morning

Cooper and Katie treat Matthew like a jungle gym, and he never seems to mind. So he spent much of the visit wrestling with Cooper and giving piggy-back rides to Katie.

Steve is really enjoying this string of visitors, and another is on her way! Natalie, another friend now in Florida, is leaving her family for a few days to spend time with us and help around the house.

1 comment:

Natalie Willis said...

Can't wait to see everyone!!! See you tomorrow! :-)