Tag: preparing for transplant

Looks like we need another miracle after all

Patrick insisted I take this picture of him eating an applesauce cookie. So good to see him with an appetite again.
Patrick insisted I take this picture of him eating an applesauce cookie. So good to see him with an appetite again.

I truly feel like getting Patrick a line through his interior jugular vein into his azygus vein was a miracle. An absolute answer to prayer.

So I was more than a little confused with the phone call I received from Patrick’s transplant nurse coordinator yesterday. In the morning when we talked, she was quite pleased with the ingenuity of Patrick’s line placement and thrilled to hear he was doing well. We discussed infection prevention strategies and his position on the transplant list.

Then she called me back in the afternoon. She’d updated one of the transplant surgeons. And, as it turns out, in order to perform an intestinal transplant surgery, you have to have a central line in the superior vena cava. It can’t be in the azygus vein. The logistics don’t work.

They asked us to fly Patrick there next week to let their specialists see if they can solve the problem. Until it is resolved, Patrick has been put on hold on the transplant list.

At this point, other than knowing that the insurance company has approved the trip, that is all we know. We have about three dozen questions that we don’t know the answers to.

Despite the news, Patrick is doing great. Infection free and bacterial overgrowth at a minimum, he is feeling great. He ate at all three meals and had several snacks today, too. I swear he was eating once an hour. He’s napping well. He’s playing happily. He is very confused about why mommy is in a bad mood.

Mommy is doing her best not to be overcome by her tendency towards catastrophic thinking.

At least I have plenty of distractions. Hospital stay followed by a week of travel followed by another hospital stay is not the way to stay on top of your housework. And I’m nowhere near ready for Patrick to go back to school, even, or perhaps especially, if we might miss the first day next week.

We are hoping to get some answers soon.

Thank you for your prayers. I know they’re helping. If you don’t mind, we could really still use them for a little while.

Patrick has a new blue car

I probably sound like a crazy person telling Patrick this several times a day. “Patrick has a new car. Patrick has a new blue car.”

I’m not just making conversation. Patrick is afraid of his new blue car. The day we took him on the test drive, he sobbed and sobbed. I think he thought we were giving him to the nice girl who sold it to us.

Unfortunately, the fear didn’t go away right away.

First, we took him on the test drive. Then, a few days later (when the banks were open), we went and picked it up. He started crying as soon as we got close to it.

He got a reprieve when daddy drove him home so I could take the car for inspection on the way home, and again when we took it to our mechanic for new tires and a checkup the next day. But when the car was done at the mechanic and he had to ride in grandma’s similar sedan so I’d be free to go to the DMV to get it licensed, he screamed bloody murder.

It took 15 minutes for Patrick to be willing to get in the car to drive home.

Things are getting better. He accepts the car so long as I don’t let go of his hand as we approach and don’t make him touch the inside of the car on the way to his carseat. But he will not sleep there. (So much for car rides to invoke naptime.)

The car is not really new. It’s used. A 2001 Mazda 626. It’s got chipped paint and a stain or two in the carpet, but it has pretty low mileage and is reported to be a reliable brand of car. The mechanic gave it a clean bill of health (after changing the tires and a CV axle).

I’ll admit, I’m a bit emotional about the car, too.

This will be our Seattle car. We decided that it would be best to have a small, gas efficient, reliable car for me to drive while Patrick and I live in Seattle. So, for a while we’ve been shopping to replace Brian’s truck. We set the money aside months ago.

We bought our Jeep with the intention of it being a business car for Brian. That’s why we got the model with leather seats and all the frills. So he can look like he deserves his “director” title when he entertains business associates from out of town. We got an SUV to help ease the transition from a truck.

Last week, my grandpa’s truck died. He needed a new one, and I offered ours. It pushed us to finally buy a car for me and Patrick.

This is one of the last and biggest items on our “get ready for transplant” checklist. I’ll admit, we’ve been stalling. Having taken this step is a leap of faith proving that we believe the transplant call will come. But it makes the reality of our having to live apart all too real, too.

Patrick’s reaction to the car is ironically all too appropriate. This car really does represent a big change that will take him away from home.

But don’t tell him that. Tell him:

“Patrick has a new blue car!”