It’s time to put the blog catchup on hold. I was doing my best to get caught up because I want to write about this week as it happens. Alas, there is still much more to write, but I need to write today today.
Our suitcases are packed. We are leaving for Omaha this afternoon. Yes, that’s right. Omaha. It doesn’t sound nearly as exciting as Seattle, does it?
But Omaha has something not found anywhere else near us. It has one of the top Intestinal Transplant and Rehabilitation programs in the country.
Last September, the night before Patrick’s checkup at Seattle Children’s and then our flight home, we sat down to talk with our friends the Laylands. I don’t remember exactly the question they asked, but Brian answered the same thing I was thinking. It was time for a second opinion.
Seattle Children’s is a great hospital, but their intestinal transplant program is young and small. They barely do more than one transplant a year. Last year, they did none.
And while I am not eager for Patrick’s transplant to come, necessarily, because he is so healthy and happy.. I am also terrified of the prospect that it will come too late.
It is getting harder and harder to get a good central line (IV) in him to give TPN through. We’ve been limping by for 9 months with one that isn’t working well just because we are afraid the next one will be even worse. Other problems come along, too, the longer he waits for transplant. Liver problems. Worse bacteria causing his infections. Everything risky now gets scarier the longer he waits.
And so, as those possibilities become more and more probable, we think that it would be wise to have him cared for in the kind of hospital that regularly see that kind of complications. We don’t necessarily believe that a transplant will come any faster if we make a change, but we hope that we can involve doctors, nurses, pharmacists, etc. who aren’t seeing these complications for the first time.
So, last fall (I think it was October), I called the University of Nebraska Medical Center. I told them about Patrick. They sounded almost giddy about his case. (Have I ever mentioned that Patrick is an interesting case?)
We talked about what their program could offer. Nurses with more experience working with patients whose veins are bad. Testing to map Patrick’s vascular system to find less-conventional central access.
And we decided to try to go ahead.
At first, the insurance company pushed back. Transplant evaluations are expensive. They weren’t going to just pay to repeat the process to satisfy my curiosity about another hospital.
But while they were ruminating on that idea, we told Patrick’s GI, Dr. Jackson what we were considering doing. I expected his response to be uncertain. He likes the team in Seattle and recommended them to us. But he was enthusiastic about having another, more experienced team take a look.
And so, when he put that opinion in writing, the insurance company stopped fighting back. If Dr. Jackson wanted a second opinion, a second opinion we could have.
But, then they announced that they were making some major changes to how our out-of-state medical insurance would be handled.
And we were in the midst of the beginning of the holiday season. And so, we let it sick.
Finally, in January, once all the insurance had switched over, I made some calls again. We made some hurried plans to do an evaluation a month later.
And that is what brings us to where we are today.
I am a nervous wreck about this trip. They will do many more tests than our initial evaluation. X-rays, scopes, fluoroscopy, and a liver biopsy. 3 consecutive days of labwork. Two days of sedation. One night inpatient. And lots and lots of appointments. I hope my activities bag is big and interesting enough.
The week the schedule came, I had migraines for the entire week.
I’m scared of going somewhere unknown. I’m scared of trying to work with a new team. I’m scared to be leaving my awesome friends and support system in Seattle. I’m not at all happy that Omaha is not a fun winter vacation spot. Or much of a vacation spot at all. I’m worried that this isn’t a children’s hospital, even though children make up most of the intestinal rehabilitation population and they surely are used to working with them.
On the other hand, I am excited to have a more complete picture of how Patrick’s health is holding up right now. And to get a fresh set of eyes to look at the problem. It’s been nice making plans with a team used to helping families lug TPN across the country.
And I have very high hopes. This hospital has an amazing reputation. So far, the team has really impressed me. The cost of living in Omaha post-transplant should be much lower. And it’s not much farther than Seattle.
But first, we’ve got to get there and see if it’s all it’s cracked up to be. And getting there has been no small feat.
We are grateful for the COTA fundraising we’ve been able to do and the donations you all have made because, while insurance is covering these tests, they aren’t covering the trip this time, and that will add up.
On top of that, we discovered major plumbing issues in our crawl space last week and had to squeeze in some major repairs. And, I lost the diamond from my wedding ring this week, which will be no small cost to repair.
So this is one time where your donations really will save us. We couldn’t afford this second look without them.
And, despite all of that drama, and Patrick catching a bugger of a cold, to boot… The bags are packed and the plans are made and in just a few hours, we’ll be checking into our room at the Nebraska House in the Lied Transplant Center in Omaha.
I hope to post updates as they come. I learned last eval that there are days that are harder than others, though… And some news that we’ll need to ponder on. I’ll do my best to post as soon often as soon as I can.