Quick update. Brents doing well today. We’ve been waiting to talk to the infectious disease doc before posting so we know what’s going on.

The bacteria in his central IV lines is one that he’s had before. In fact, it is the same one that caused his endocarditis that tried to kill him and subsequently caused his open heart surgery for a valve replacement. Yippee. Not.

We were given two options. A) Remove the line, get a PICC line put in for his TPN (IV nutrition he does every night), be on IV antibiotics for five days, re-test via blood cultures, put the Central line back in when safe to do so. B) do NOT remove the central line, run IV antibiotics continuously through the lines for 14 days (at home, not in the hospital) still being able to use one of the lines for tpn every night, re-test via blood cultures and if negative, he’s good to go.

We chose plan B.

Both plans create different complications to consider. If the lines are removed, he has to have a PICC line put in. He has already lost most of his access points in his arms for PICC’s. And every time you remove his central Hickman line it reduces his access also. One of the major qualifications for an intestinal transplant is major loss of IV access. While a transplant sounds like a great ‘cure’ or option, it is not. Intestinal transplants are very risky and there are so many things to take into account. It is not a cure. He would still have Crohn’s Disease but with a fresh new intestine to wreak havoc in. Ultimately we would have to live in Los Angeles for a year to be near UCLA. That is the hospital that we chose several years ago to have a transplant when and if the time ever comes. He is not on a formal transplant waiting list, but he is in their system and we have been down there to meet with their transplant team.

So, we are going with plan B. It’s not ideal and will be a pain. This particular antibiotic affects him terribly and I will have to watch him carefully. This bacteria tends to love foreign objects such as his heart valve and central line. We will have to make sure that it is totally gone before discontinuing the antibiotic. They will do an echo today to make sure there is no growth on the heart valve. It will be repeated after the 14 days.

So, that’s the scoop. Hopefully the echo will be clean and they can get things ordered and set up for home and we can go home tomorrow. 🤞🙏.

He’s currently dialed in to a zoom staff meeting so I think you can safely say he’s bored and doing much better. 🤣.

Thanks for checking in on us. Love you.