Bump in the Road

Yes, that is a hospital gown Aaron is wearing. Yes, he is sitting in a pre-op room in surgery. Yes, that photo is from today.

A little over a week ago, Mike and Aaron were at the clinic for an appointment. One of the nurses was flushing his central line. She took a look at his insertion site and said, "Hmmmm. Is that just a scab? Or is that actually the cuff?"

She had a nurse practitioner come look at it, who said, "I think it's just a scab, but I can see what you mean. Let's watch it for a bit."

And so for the next week, we continued to keep a close eye on it. When we were at the clinic on Tuesday and Wednesday, we pestered the nurses to look at it again. Even though they were the ones who had originally brought it up, the worry and concern had transferred over to us, and we found ourselves pushing them to follow up with it.

The problem was, there was still a scab over it--the same scab that had been there since the line was originally placed six weeks ago. We couldn't really assess anything until his next dressing change.

The home health nurse came to our house on Thursday, following a call to the clinic to see if we should hold off changing his dressing until the next day when Aaron would be back at the hospital for an appointment. Then it could just be changed there and the BMT team could examine it themselves. But no one returned the call.

So the nurse and I made an executive decision that the dressing was due to be changed, so she would come and do it, and then if it was a big deal to the team, they could change it again the next day.

As soon as the nurse removed the dressing, that old scab finally came off, revealing what it had been hiding: "Oh yeah, that's definitely the cuff," the nurse confirmed.

Warning: graphic medical photo below. 

Even though I feel like I'm always coming at medical information from a place of ignorance and having to bring myself up to speed, I instantly knew this was not a good development. If there's one thing I've learned, it's that the line is the gateway to all types of infections, which is why there are so many precautions taken to keep it clean and in good working order. You definitely don't want it to be tugged out of place.

I took Aaron to his appointment on Friday, and each person who looked at his insertion echoed the words of the home health nurse: "Oh yeah, that's definitely the cuff."

They sent Aaron downstairs for an x-ray, which provided evidence that the line had indeed moved. Even though it was still flushing, drawing blood, and giving medications without problems, it was just too risky to keep using it. When Dr. Harris came in, he finally verbalized what I had been fearing all along: "The line will have to be replaced."

Before we left for the day, I hesitantly asked the nurse practitioner if there was a possibility that Aaron could just have the line removed instead of replaced. After all, his line was contaminated a month ago, and so he has been getting peripheral blood draws ever since; the team has been talking about switching his IV magnesium to oral; and hopefully the blood transfusion last week was his final one. From what I could see, the line wasn't being used for much except to provide Mike and me with the daily entertainment of flushing it.

But Brenda looked at me in shock and said, "Oh no, he is much too early in the transplant process to get rid of his line! The risk of graft-versus-host-disease is still quite high." I snapped my mouth shut and blamed it, once again, on my lack of medical training.

So imagine my surprise when we met with the surgeon this morning, and as he talked about what he planned to do, he said something about needing the line for chemotherapy. "Oh no," I interjected. "Aaron isn't getting any more chemotherapy."

The surgeon gave me a sharp look and said, "If he's not getting more chemotherapy, why on earth am I putting in another line?!" I had to admit that I had asked the very same question a few days before. He strode out of the pre-op room, muttering that he had to call the BMT team and that he'd be right back.

When he opened the door again, he said, "Dr. H. is going to come down and talk to you about your options. I have to go do another operation." "Wait, what do you mean, options?" I asked. "I'm sorry, Dr. H. will have to talk to you about it. I'll be back."

I should insert that at this point, Aaron was actually on track to get back into surgery ahead of schedule. I might have known it was too good to be true.

The next person to open the door was Dr. H., who looked slightly uncomfortable. I'll spare all the details of the whole conversation, but the general idea was this: While there was no question that Aaron still needed some type of line that could be utilized quickly in an emergency, it didn't have to be a broviac. A picc line would probably do just as well, and placing it would not require Aaron to go under general anesthesia. The only downside was that picc lines tended to clot more easily. Oh, and they couldn't do a picc line today because it was a different procedure, so Aaron would have to be put back on the schedule for a different day.

I'm going to admit that at this point, I felt disgruntled, maybe even irritated. I'm not sure if it showed in my face or not, but inside I was thinking, We are having this conversation now? After Aaron has been fasting for fourteen hours and is dressed in a hospital gown? Now you're telling me we have options? Where was this conversation on Friday?

And then Dr. H. had the audacity to finish his explanations and ask, "So what would you like to do?"

My irritation flared to anger (but again, I like to think it wasn't obvious to anyone in the room). I appreciate it when doctors respect my opinion, answer my questions, and include me in the final decision. But to completely open up another option as my child is sitting there ready for Option 1 (which only a few days before had been presented to me as the only option) is unfair and unprofessional.

As I asked more questions, Dr. H. kept saying things like, "The surgeon is just trying to be certain we need this line. He is right to question us. He is just taking precautions. Anesthesia is serious. It's not something we treat lightly." And I agreed with him on all points. But then as I was asking him about the actual line placement and where it would be, he said, "I'm not the surgeon. I would have to defer to him. I don't know much about placing central lines." And the thought crossed my mind, This is not your field of expertise. But at least you're a doctor! I'm nothing, and yet you want me to make somehow make this decision with five minutes' worth of information!

Ruefully, I thought of Mike who was sitting at work at that very moment instead of beside me because we thought this was just going to be a basic procedure, identical to the one Aaron had already had.

But in the end, I gleaned the important information: the broviac would be reliable but would require general anesthesia; the picc line wouldn't have a double lumen and would have a higher risk of clotting, but it would be an easier procedure. It seemed to really boil down to: did I want Aaron to have to go under general anesthesia again?

Well of course I didn't want it. But I also knew that Aaron hadn't had any problems or complications with it in the past, and so he probably wouldn't this time either.

It seemed to make the most sense to just go forward with the original plan. Aaron concurred: that was what he wanted too.

The surgeon came back in, said, "It sounds like we have a plan," and two hours later, it was all done. The broviac was moved to Aaron's right side, he came out of the anesthesia without fanfare, and we were back home by mid-afternoon. Tonight Mike gave Aaron his magnesium and flushed both lumens, and everything worked beautifully, just exactly like it should.

I'm not trying to downplay the gravity of going under general anesthesia and having a central line replaced. It's a big deal. But it's also a technicality. It's merely part of the supporting cast in this epic adventure. Aaron's blood counts, as the real stars of the show, are what we're actually concerned with, and those are still looking great.   

And hey, now his line is no longer contaminated!

P.S. I just have to assure you that even though it may not sound like it in this post, I really do love our team of doctors and nurses. Just the fact that they were willing to put the brakes on the surgery this morning shows that they have Aaron's best interest in mind and are doing their best to care for him. They're doctors, but they're also human, and I can forgive them for that.