Freddie's Healthcare Events
Fred Replies to Dr. Lawson's Email for WakeMed
Monday August 18, 2014
Fred Replies to Dr. Lawson's Email for WakeMed
August 18, 2014
From: Fred Lempe
Sent: Monday August 18, 2014 8:20 AM
To: WEST LAWSON
Cc: 'DONALD GINTZIG'; 'BECKY ANDREWS'; 'TED FEINSON'; Roylyn Johnson
Subject: Help Freddie Lempe
Thank you for your reply to this very serious matter concerning my son, Freddie. The criticalness of this life matter is exactly why we are so intent on making sure that the facts and our position is clearly understood and not ignored. I do want to make sure our thankfulness is known of being able to have dialog about these issues now, and what seems to be the willingness to look at what Freddie’s medical needs have been for a very long time.
We have repeatedly stated that we want to forget the past and not concentrate on the negative occurrences, however; there are things that need to be addressed in reference to your last correspondence, so that we may move forward to do what is best for Freddie.
Firstly, your faith placed in “the team”. I do respect the education acquired to hold such a position as Freddie's current physicians. However; based on my previous three (3) years experience of this team choosing not to advance the care for my son and label him with “supportive care” only, I do have little faith that the leader of Freddie's current team will suddenly change his mind and be ever so willing to want to help Freddie now as we close in on nine hundred (900) days of complete and absolute refusal to provide him with the treatments he needs in his recovery. I will point out, as I did on one of our phone conversations, there are some members of that team that have stated they would be willing to provide the necessary treatments to assist in weaning Freddie as they had been doing until 2012. The acute options (except for surgery at this time due to the current lack of further infection) that were put on the table in our original meeting were NOT discounted by Dr. Udekwu during any conversation we have had. Both of us that attended the meetings know exactly what Dr Udekwu told us about his opinion. To help illustrate our valid concerns of the faith you feel we should have in “the team,” I’ll give some examples: In 2011, the surgery that I didn’t want, but was forced into, left a hole in Freddie’s lung that remained unacknowledged for two months. During this time, Dr. Matheis (a member of the team) came in with much needed aggressive acute respiratory treatments that STILL occur multiple times a day up until now. After four bronch washes, the hole was finally acknowledged by another member of “the team,” yet the bronch washes were stopped and the team leader refused to treat even when asked by the director of the WakeMed Children’s Hospital. Finally Dr. Timothy Hart provided the appropriate bronch washes, only after the director of the WakeMed Children's Hospital went outside of WakeMed and asked him to do what “the team,” led by Dr. Feinson had concluded wasn't appropriate for Freddie. Fortunately Freddie’s clinical condition improved tremendously and was even able to begin performing trach trials again successfully on multiple occasions as well as 19 hours off of the vent. The NP for the team was happier than anyone and was more than willing to continue to help Freddie, including the bronch washes. After WakeMed failed to acquire guardianship over my son and that pulmonologist, Dr. Hart was hired by and came onto WakeMed staff, those bronch washes were stopped, and we were told “they don’t do any good” and “are only a way to make doctors wealthy” by “the team” leader. Even Dr. Hart then told me to “take my son somewhere else” and that Freddie would not receive anymore bronch washes. Although, just before his employment to WakeMed, he had said that they should be done as needed and assured me that he was more than willing to continue doing them. I am aware that he is no longer associated with WakeMed, but as for “the team leader,” I again question that any change of opinion or any willingness to help could have occurred after all of this time. As I pointed out in our phone conversation, administration should question the “good medicine” over the last three (3) years if in case, Dr. Feinson suddenly decided that weaning may be an option based on other opinions in order to place Freddie in a long-term care facility. I again would ask that you understand how I could have little faith in the leader of the team and any willingness he might have to help now. It is not that I will never agree with any doctor at WakeMed, but as you can see, I have had my own experiences at good medicine vs. bad medicine. There are doctors at WakeMed that have had different opinions on how to help Freddie, but because they don’t share the same opinion as this team leader and what is becoming very apparent to be administration’s, they unfortunately haven’t had the opportunity to help.
This brings me back to the real medical need that was there throughout the three (3) years and still remains there now for Freddie. The fact that so much time has been deliberately wasted doesn’t change the need; it just makes it even more urgent. Now, I get the message you are sending about who the “professionals” are. And let me once again make clear that I have the utmost respect for the enormous achievements that it took all of you to become the professionals and doctors that you are. At the same time, with no less importance, the facts of what has happened in Freddie’s care are the facts. The treatments, discussions, debates, maneuvers, refusals, and the documented responses of Freddie's condition and recovery progress to all of this, are the facts. So to clarify, I don’t and have never claimed to be a doctor. I do, however, know what has happened. I also know, as a professional myself although in a different field, I cannot allow or support my employees to decide based on their opinion that they don’t need to do what the customer needs that our company is in business to provide for them, especially after being paid to do so. I can’t portray that we will do everything we can for a project, get paid to start the job and then have an employee decide they don’t want to finish the job by saying the building isn’t worth working on and leave the customer with an exposed structure that will be destroyed by an unfinished job. Even you wouldn’t expect that as a customer from a service provider. Granted in this scenario, the customer will fire us and get another contractor to do the job that we were unwilling to do. You and I both know that is not a viable option in today’s medical environment.
As for your suggestion of me finding another physician to take over Freddie’s care; I have been told that “they cannot get involved because it is too political with WakeMed,” or that they “don’t feel comfortable coming into the care with this group”, and “my hands are tied”. Where does that leave me with any hopes of finding someone else or somewhere else to go? Is it too much to hope for that WakeMed Health and Hospitals organization could do what even you as an administrator, agree and said should be done to help Freddie and get him off of the vent?
If we really want to help Freddie here, then the honest effort to truly accept what Freddie’s accomplishments and responses to the treatments have been have to be looked at and acknowledged. Then the clear decision would be to go back with the all out effort to get Freddie back to where he was in 2012 and then move forward with everything that was on the table then and provide those needed treatments, and go as far as needed to get Freddie where he should have already been. Only then can we say that we have truly made the honest effort to correct the past and give Freddie what he needs to continue with what was truly helping him.
I want to make clear, the only reason I went into all of the above was to point out what we know to be the truth. It doesn’t mean that we are unwilling to work with what we have to work with. It merely is just to keep us on the realities of what we have dealt with and our concerns of those difficulties so as not to have any assumptions of any intent. With that being clarified, we do think there are still doctors in WakeMed that still want to help Freddie today, just as they did before. We ask that we figure out a way to get them to be able to treat Freddie without any negative influence that would hinder that effort. Unfortunately, as it has been described to us, that is a problem with the way the WakeMed system is designed to operate.
I have made suggestions on how to get around this and I will do so again. There are doctors/pulmonologists in the Intensivists group that have, and I think, would still want to help Freddie. I have named them, however you said that would not be an option as the whole group would have to agree as a group under the direction of Dr. Feinson. That is an extremely unfortunate obstacle for Freddie in WakeMed that you say nothing can be done about. I would say, just like a physician, (that you have instructed me to go out and find) would not always be on duty at the hospital; a doctor or doctors in the group that wants to help, could be allowed and would follow up at return to hospital duty. Not to mention, they may actually be willing to be on call at some times. The week days will be covered, because Freddie’s NP makes her rounds daily Monday through Friday. She was very helpful, willing and just as excited as us in Freddie’s progress before the unfortunate turn of will against Freddie in 2012. She was the “go between” for us and the doctors and I think this is still in place and could be the case but adjusted to just work with the doctors who have the will and desire to help Freddie in this endeavor. The current nursing staff and RT’s know and love Freddie very much and are the best in place professionals to resume the efforts stopped in 2012 that they were all excited about, but left disappointed as much as we were when Freddie’s treatments were withdrawn.
I invite all of us to be honest with what our wills are. We should never stop asking the question: What can we do right now to be a part of making things better? And we certainly shouldn’t ask that someone else be the answer, when we have what it takes to help Freddie right here. Let’s pledge to be open to new ways of doing things that make us better at what we do. We ask that WakeMed please join us and choose to help Freddie.