GOING NOWHERE FAST!!!!!
It's been a week since the last update, and two weeks since surgery.
Unfortunately, this past week has been a frustrating period of little or no progress. Vikki was not able to breathe independently. I got to the hospital on Wednesday of last week to find the staff in the midst of replacing the breathing tube and putting her back on the vent machine. (Of course, no one called me to tell me she was having breathing problems).
She had to go back to a routine of daily pressure support trials (i.e., breathing with minimal assistance) trials to see if she could get strong enough to remove the vent and tube. The do the trial once or twice a day. She has one good result and then one that is not so good. So she is making no progress toward removal of the vent and tube. We are both getting frustrated. She cannot talk. They have to keep her in restraints so she won't pull out the tube. I never expected things to be this slow and difficult.
And the worst part of the whole experience is the medical treatment. She has two (maybe three) different medical teams responsible for her care....surgery, pulmonary and cardiology. The communication between the doctors is almost non-existent, and the story that I get from them changes from one team to the next and from one day to the next. It almost seems like they have never done this before and have not yet figured out how to talk to each other and how to talk to patients and their family.
One day we hear the went ahead with the surgery because the lungs were such a good match. The next day we hear that the donor was a smoker, had mild pneumonia and had some other problem - but the lungs were still "good enough" and they didn't want to wait. One day we hear that Vikki is progressing slowly because she was so weak going into the surgery and the next doctor tells us she is progressing slowly because the lungs themselves were not in the best condition. We have not sent the attending surgeon since he completed the surgery, so we get all of our information from a resident or fellow. The teams change every couple of days so there is no consistency.
On top of that, there is no coordination. The pulmonary docs say she needs to start physical therapy to rebuild her strength and conditioning. Then the PT department comes in to say they only work with patients in the ICU three days a week (how is she going to get stronger with that kind of rehab?)
I discuss this with the pulmonary docs and they "negotiate" a five-day a week schedule with therapy. So the therapists come in and spends about three minutes helping Vikki stand and sit on the bedside twice and then leaves. And we haven't seen a therapist again for 3 days. I guess they can promise anything, but they have no accountability to actually follow through on the plan.
Today, the poop really hit the fan around here. The pulmonary docs and the surgeons have been saying that they don't want to keep her on the breathing tube for more than two weeks (specifically using the term "dangerous" in talking about a longer period). The PA from surgery and the attending from pulmonary were in this morning to talk about a tracheostomy so they can give her breathing support through a hole in her neck, which allows her to breathe on her own more and eliminates the uncomfortable breathing tube and which would also allow her to talk. They indicated they plan to talk to thoracic surgery to get her on the schedule, hopefully as early as Wednesday (but we agreed they would push to schedule this for tomorrow since Vikki is so uncomfortable with the breathing tube and since I have to leave town early Thursday). About an hour later, the thoracic surgery team comes in to check on her and to tell me they can't do the procedure for at least 5 days because she is on a blood thinner to guard against possible blood clots. I totally lost it....this is a known fact that is in her medical chart and that everyone treating her knows about. No one could explain why one group of doctors is talking about doing surgery tomorrow or the day after, knowing what medicine she is on, and the other doctors are saying we have to wait 5 days. Now, they are arguing about how long it is safe to keep her on the breathing tube.
I cannot find any way to rationalize this absurd lack of coordination. These people have done this before....dozens of times. I have no idea why they cannot communicate and coordinate. No wonder our healthcare system is so messed up....if this is typical of the lack of care coordination that goes on in a major medical center.
And the worst part of all of this is the effect it is having on Vikki. She can't talk but she can hear all of this going on around her. She is frustrated. She wants to get the breathing tube out. And she knows we can't get a straight answer from anyone and the doctors can't even agree among themselves.
This too shall pass. And we have to keep our eye on the prize and the ultimate goal. She is getting better, slowly. And hopefully they will figure this out.
Stay tuned for more updates. And hopefully for better news.
It's been a week since the last update, and two weeks since surgery.
Unfortunately, this past week has been a frustrating period of little or no progress. Vikki was not able to breathe independently. I got to the hospital on Wednesday of last week to find the staff in the midst of replacing the breathing tube and putting her back on the vent machine. (Of course, no one called me to tell me she was having breathing problems).
She had to go back to a routine of daily pressure support trials (i.e., breathing with minimal assistance) trials to see if she could get strong enough to remove the vent and tube. The do the trial once or twice a day. She has one good result and then one that is not so good. So she is making no progress toward removal of the vent and tube. We are both getting frustrated. She cannot talk. They have to keep her in restraints so she won't pull out the tube. I never expected things to be this slow and difficult.
And the worst part of the whole experience is the medical treatment. She has two (maybe three) different medical teams responsible for her care....surgery, pulmonary and cardiology. The communication between the doctors is almost non-existent, and the story that I get from them changes from one team to the next and from one day to the next. It almost seems like they have never done this before and have not yet figured out how to talk to each other and how to talk to patients and their family.
One day we hear the went ahead with the surgery because the lungs were such a good match. The next day we hear that the donor was a smoker, had mild pneumonia and had some other problem - but the lungs were still "good enough" and they didn't want to wait. One day we hear that Vikki is progressing slowly because she was so weak going into the surgery and the next doctor tells us she is progressing slowly because the lungs themselves were not in the best condition. We have not sent the attending surgeon since he completed the surgery, so we get all of our information from a resident or fellow. The teams change every couple of days so there is no consistency.
On top of that, there is no coordination. The pulmonary docs say she needs to start physical therapy to rebuild her strength and conditioning. Then the PT department comes in to say they only work with patients in the ICU three days a week (how is she going to get stronger with that kind of rehab?)
I discuss this with the pulmonary docs and they "negotiate" a five-day a week schedule with therapy. So the therapists come in and spends about three minutes helping Vikki stand and sit on the bedside twice and then leaves. And we haven't seen a therapist again for 3 days. I guess they can promise anything, but they have no accountability to actually follow through on the plan.
Today, the poop really hit the fan around here. The pulmonary docs and the surgeons have been saying that they don't want to keep her on the breathing tube for more than two weeks (specifically using the term "dangerous" in talking about a longer period). The PA from surgery and the attending from pulmonary were in this morning to talk about a tracheostomy so they can give her breathing support through a hole in her neck, which allows her to breathe on her own more and eliminates the uncomfortable breathing tube and which would also allow her to talk. They indicated they plan to talk to thoracic surgery to get her on the schedule, hopefully as early as Wednesday (but we agreed they would push to schedule this for tomorrow since Vikki is so uncomfortable with the breathing tube and since I have to leave town early Thursday). About an hour later, the thoracic surgery team comes in to check on her and to tell me they can't do the procedure for at least 5 days because she is on a blood thinner to guard against possible blood clots. I totally lost it....this is a known fact that is in her medical chart and that everyone treating her knows about. No one could explain why one group of doctors is talking about doing surgery tomorrow or the day after, knowing what medicine she is on, and the other doctors are saying we have to wait 5 days. Now, they are arguing about how long it is safe to keep her on the breathing tube.
I cannot find any way to rationalize this absurd lack of coordination. These people have done this before....dozens of times. I have no idea why they cannot communicate and coordinate. No wonder our healthcare system is so messed up....if this is typical of the lack of care coordination that goes on in a major medical center.
And the worst part of all of this is the effect it is having on Vikki. She can't talk but she can hear all of this going on around her. She is frustrated. She wants to get the breathing tube out. And she knows we can't get a straight answer from anyone and the doctors can't even agree among themselves.
This too shall pass. And we have to keep our eye on the prize and the ultimate goal. She is getting better, slowly. And hopefully they will figure this out.
Stay tuned for more updates. And hopefully for better news.
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