Monday, September 22, 2008

The oxygen travel jinx



As I’ve mentioned previously, Shirley is now on oxygen all the time. When at home, we have two large tanks of liquid oxygen and she has a long tube that allows her to move about the house. (It also makes tracking down Shirley in our rather rambling house a pretty easy task). She also has a small, portable tank that holds about 6 hours of oxygen for trips about town.

But that leaves a gap as to how to deal with trips away from home for periods longer than 6 hours. Our medical air supplier, Lincare, provided the solution in the form of a medium sized tank (about the size of a full keg of beer). This tank holds 40 pounds of liquid oxygen that allows us to travel for up to about four days. She can either run a tube directly from the tank or use it to refill the portable tank as she does at home.

For some reason, although this tank differs only in size from the tanks at home, it has been rather temperamental on our travels. Three times this summer, we’ve had the tank accidently drain while on a trip.

The first—and most dramatic happened back in June. We were staying with Shirley’s brother and sister in law in Seattle. Pete and Carolyn had recently remodeled their home on a bluff overlooking Lake Washington. They have created a very nice guest apartment in the basement, which features a ground level entrance. We had set up camp downstairs and the oxygen tank was in our bedroom. I had just filled the small tank and as I pulled it away from the transfer valve, instead of closing back up, it stayed open and started shooting pressurized liquid oxygen into the air. Immediately above the tank was a smoke detector—which couldn’t tell the difference between smoke and a dense cloud of vaporized oxygen. Not only did it immediately set off the alarm (which was of course was hardwired to an alarm company), but it froze the sensor.

As Carolyn madly attempted to shut off the sirens by punching in the alarm code, I tried to figure out how to stop the jet of oxygen. Note to self: holding a small washcloth over a jet of -193⁰C oxygen only serves to freeze-burn fingers. Moving on to Plan B, perhaps throwing water on the vent would freeze it shut…so I grabbed a handle and drug the tank into the bathroom. I then quickly filled up a small container of water and turned back around—but the tank was completely hidden in the fog of oxygen vapor. A few feeble tosses of water did nothing.

On to Plan C. At this point, we were less concerned about preserving the remaining air in the tank and more interested in just stopping the noise. So outside we went, where the tank continued to hiss and spew for another five minutes.

Fortunately, we had just filled the little tank. And Lincare is a national company with 24-hour-a-day on-call response. Within a few hours, a guy was there who refilled the tank—which slowly leaked away the next day. Lincare then delivered a loaner tank, which then spent the rest of the summer beside Pete and Carolyn’s house waiting to be reclaimed by the oxygen company.
Having learned our lessons from the first experience, when the vent got stuck open on our next trip (to visit Shirley’s cousins in Coeur d’ Alene), we just took the tank outside and found the local Lincare dealer who came by and provided us loaner equipment for the rest of our weekend.

Our last trip of the summer was for my family’s annual reunion. On our way to Fort Warden on the Olympic Peninsula, it was almost serendipitous that we spotted the Lincare dealer on our way through Port Townsend. The next day, sure enough, the valve got stuck again and caused us to need to call the Lincare folks once again. Prior to providing another loaner, the technician tried to fill our tank for us. My dad captured the rather dramatic shot shown at the top of this entry.

As a side note, Lincare is now phasing out their “high pressure” tanks and replacing them with low pressure tanks. We’ve been assured that this should prevent this type of situation from happening in the future. And we really appreciate the help from all the nice folks at Lincare in Seattle, Coeur d’ Alene, Port Townsend, and of course Portland.

Sunday, September 7, 2008

Saying goodbye

Early this morning, Jessie and her boyfriend, Donovan left for eleven months of foreign exchange in Tübingen, Germany. Under any circumstance, this is a tough time for a mom. For Shirley, added to the difficulty is that Jess is her only borne child (although she loves Chloe and Souang as her own), and the fact that we can’t leave the Northwest to go and visit because of her need to stay in close proximity to the hospital.

This will be a great experience for Jess. And I am grateful of the technology available to help keep her close. We’ve set up a web camera and created a Skype account so that we can have video calls over the internet. Thankfully, with the aid of the internet, it’s as easy to keep in touch with someone in Germany as it is when they are away at Western Oregon University—you just don’t get to come home for the weekends.

I know the next few weeks are going to be particularly tough. Once regular communications are established and Jess and Donovan settle into their routine, I suspect that the excitement for the kids and their overseas experience will help overcome the sadness. But for now, as they wing their way across the Atlantic, there is just sadness.

Thursday, September 4, 2008

Walking the fish

While waiting for the transplant call to come, one of Shirley’s objectives is to build up as much muscle mass as possible. This is to help counteract a side effect of prednisone (an anti-rejection steroid) which eats away at muscle.

To help accomplish this, we’ve joined a 24 Hour Fitness center and Shirley is working with a personal trainer in the weight room. She is also swimming at their pool three to five times a week. Given that Shirley is currently on oxygen, this presents an interesting challenge: how does one swim laps while carting around a small portable oxygen tank? The answer is to bring along an assistant to walk beside the pool, or what our kids affectionately refer to as “walking the fish.”

While Michael Phelps and his Olympic colleagues have nothing to fear in terms of pure speed, Shirley has endurance. She needs to pause at the end of each lap to catch her breath, but she’s up to 800 yards (over half a mile) while one of the family members walks beside the pool to keep the oxygen tank close enough to reach her.

I want to throw out a big thank you to Jess, Chloe and Souang, who have all taken turns walking the fish.