15 February 2011

Executive Decision

Bennett and I met with the Infectious Disease doctor (ID) at Cook's Hospital today. This is the appointment I felt would never come. I practically begged the GI nurse to move the appointment up so we would not need to wait so long to see a specialist. However, today, the appointment felt less than impressive.

Certainly, it was a good appointment that offered us more advisement on dealing with Bennett's chronic C.Diff. issue. However, the reality is Bennett's C.Diff. is under control right now because of our new GI doctor at Scott and White.

So, there wasn't alot that the Infectious Disease doctor offered us. He did disagree with how long Bennett has been advised to stay on his Vancomycin antibiotic. The Infectious Disease doctor recommended that we not stay on the Vancomycin antibiotic for the full four months as was decided by Bennett's new GI doctor at Scott and White but taper off the medication within a two months.

The Cook's Infectious Disease doctor said his concern with staying on the Vanco too long is that Bennett could become resistant to the Vancomycin and acquire VRE (vancomycin resistant enterococcus). Acquiring VRE (or any "superbug" such as MRSA) would force Bennett to be on isolation at the hospital during any future visit. (Isolation at the hospital is a bit like living in solitary confinement in prison - you're not allowed to leave your hospital room for the entire time you're at the hospital which is not fun.)

The ID did reassure me that Bennett's C.Diff. was relatively classic for C.Diff. - difficult to get rid of but not impossible. He said he did not have any concern that we couldn't overcome the bacteria eventually. Although, when I asked him what his plan would be he said, "I don't know. We don't really have a recipe for these sorts of things. We just kinda have to go along and figure it out."

But outside of reassurance and a slight change in the amount of time to give the Vanco, the Infectious Disease doctor didn't have much more to offer than what we have already been able to gain from our new GI doctor.

So, this evening, Brian and I made the executive decision to essentially change GI doctors...

I really really liked our GI doctor at Cooks. However, a repeated failure to return my phone calls to the GI nurse, a lack of communication with other doctors regarding Bennett's care, a refusal to be aggressive with Bennett's ongoing issues (which essentially landed him in the hospital) and a difficulty with scheduling appointments led us to this decision.

We believe this office/doctor is likely overwhelmed with too many patients. And that's ok. It's just we've decided that for Bennett, we need to find an office/doctor that isn't.

On the other hand, the new GI doctor is able to see Bennett in his office within 48 hours, is willing to communicate as much as possible by phone and is highly interested in being as aggressive as we as his team believe is necessary. This is like night and day for us!

However, decisions like this aren't easy. The CF doctor wasn't too excited about my potential decision to change GI doctors when I saw her last week. (She prefers working with the doctors in her hospital system). And I really really liked the GI doctor at Cooks. He took such good care of Bennett in the hospital last year.

I am a bit anxious that having doctors at different hospitals might be difficult. I am a bit anxious that I might end up regretting my decision. And I am a bit anxious that I might eventually be disappointed by this GI doctor as well.

However, the important things I am trying to remember in this situation are
1.) Decisions must be made with current information.
2.) Decisions can always be changed.
3.) As Bennett's parents, we must stay focused on what's best for Bennett at the risk of hurting feelings

I sometimes joke with Brian that I'm a doctor. I'm obviously not. But I can sometimes feel like I'm placed in the situation of being Bennett's personal doctor. With a team of doctors who essentially care about only one part of him, Brian and I tend to serve as the executive decision-makers or personal doctor in charge of all of him.

And today, as Bennett's executors, we've decided to cancel our appointment on Wednesday. We will no longer see the GI doctor at Cooks. why do I feel a bit like Rose (from the movie Titantic) watching Jack slowly drift off into the sea? Is this the best decision to let the GI doctor go? I think so. But time will tell.

1 comment :

  1. Lol, the Titanic. Interesting how doctors have such different plans sometimes. Sometimes I feel like even the CF doctors have the same sort of plan: "I don't know, let's see what happens".

    Azer's cultured MRSA in the past. During hospital stays, he is not allowed to go to the playroom, but he is allowed to go outdoors. They have a cool play area outside, so during admissions he and I go outside in the evening. From what I've seen, they treat MRSA like the other CF bacteria. They treat it when it causes symptoms.


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