Monday, September 26, 2016

Stranger Things, IRL

Bo wanted to go to Hawaii, so we went to Hawaii. A week into his COBRA ending. So he had a new insurance company, a new infusion company, and ten thousand miles of travel during the transition. I'm a great planner.

Also, sand. He hates sand. I did mention that we were going to an island in the middle of the ocean, on the equator, where it would be hot, sunny and sandy. All the things he hates. He still wanted to go. So we went.

Before leaving, the new insurance company called me to warn me that Omegaven will never be covered by our plan, and that we won't even have an opportunity to appeal the denial. So when we got home to our dwindling supply, I saw their letter and shoved it to the bottom of the pile. We got home the Sunday before Labor Day, and school started on Tuesday. We had two whole days to transition six time zones. Did I mention what an awesome planner I am? For grown-ups. I've only been wrangling children for 10 years.

What? Anyway, I digress. So I opened the last letter on Labor Day. It was an approval of Omegaven. By the new insurance company. I had already made a clinic appointment in Boston for Bo, and purchased airline tickets for him and his dad. And now we would need neither. A shocking and incredible problem to have. 

But believe me. I did not cancel a damn thing until I had confirmation that our infusion company had his Omegaven within an hour of the house.

So we had a great summer, and awesome vacation, and now we have Omegaven being delivered to the house again.

I did cry, cuz, duh. But also because it was actually unbelievable. Like everything else about this kid.

Wednesday, April 13, 2016

Rounding the Bend

Bo's line had a good long run: 6 years, 10 months, 2 weeks and 2 days. But who's counting? Amirite? The last 13 months, his site had developed unrelenting granulation tissue. For the uninitiated, and the wary, it's a lot grosser and more disturbing than it sounds.

skip ahead or stop reading (trigger warning!)

Granulation tissue is when the skin finally says, I am not into this. And then it gets all weepy, red, irritated and acts infected, even if it is not. And it's a case of self-fulfilling prophecy, if the skin isn't constantly being monitored, cleaned and basically babied within an inch of its life.

By the time I was ready to fly the white flag of surrender, I knew he would have to get a new line. As soon as I admitted that looking at my son's site was so disturbing to me that I could no longer change his dressing, let alone assist in a dressing change, the surgeon looked me in the eye and said, "it's time to schedule a new line."

Because we have heard of lines that were so old, they fell apart inside the child upon removal, we knew that this procedure, as routine as it was being painted, still held the possibility of the worst case scenario. So for the month of November and December, I was a weeping, nervous wreck. The surgery was scheduled for New Year's Eve. We had to make sure he stayed healthy, or the surgery would have to be rescheduled, and he would only have a long weekend to recover, before school resumed from Winter Break.

As an aside, it should be noted that no one in this family besides Bo had ever undergone surgery until about a year ago. Although I did give birth to two full-sized babies, I did not take any medications for their births. So it was both lucky (so I had the experience and could relate to Bo's recovery needs better) and unlucky (for the pain, duh) that I had infected kidney stones last fall. That required stenting, twice, as well as surgery to remove the stones (litho-something). And after I was discharged from the hospital I resumed work, whereupon I noticed that my brain had stopped working.

The nurse reminded me that I had massive amounts of narcotics in my body whilst enduring the procedure, and that it can take as long as a month to purge the after-effects!

So when Bo was forgetful, or emotionally fragile a few weeks after his line replacement, I fully understood where his head was.

And, we were so grateful that the surgery too the best case scenario course. Not only did the old line come out in one piece, but the surgeon was able to replace that line "over the wire." In normal English, that means he did not have to make a new insertion, Bo did not lose that site, and all that remained was to bring the end of the line out through a newly created site, and close up the old site.

We have all recovered well from this procedure, and I am delighted to say that his new line is robust and his new site looks great!