Let me start by saying hi to all!
I am a father of an 11yo boy with fairly severe CF, recently we have been hospitalized 3 times in the last 10 months. I have become increasingly irritated with the staff, including doctors, respiratory techs, phlebotomist, and housekeeping not adhering to infection control protocols. They have not been gowning, gloving up, using hand sanitizers, washing hands, or using a dedicated stethoscope as dictated by infection control protocols when entering the room! On our last two visits I have made complaints concerning these matters and here we are again facing the same issues! It has become such an issue for me that they won't adhere to the rules about spreading infection, yet they demand that we follow the rules about not letting our children be in any proximity of one another. On our last visit he made friends with two other little girls who are CFers. The two other mothers and I made the decision to let our children play with one another and we all remarked how happy they were. We did make them wear mask and took the same precautions that you would when you are in clinic around other CF patients. The doctors response to this was absurd, on our last day when we were getting ready to discharge one of the doctors threatened to make me sign a "behavioral contract" and advised me that if we did not adhere to the rules that it would be at their discretion as to when I was allowed to visit or stay with my son and that it would be on a limited basis as they saw fit. I then became extremely irritated and told him that we as parents had the ultimate say in what our children did in our own rooms! Ultimately I ended up ordering the doctor out of our room until I had calmed down enough to continue to have a rational conversation. In continuing the conversation I told him that it was extremely unfair for the staff to be allowed to "break the rules" and then advise us that we may no longer be welcome to visit our own children! Also told him that treating these children as lepers is not the answer in treating them, and that they were only treating the physical effects of the disease and completely ignoring the emotional and mental afflictions that it poses on them. I told him that by letting our children play together for that short period of time had brought a smile to our children's faces that we had not seen in quite some time. All of this took place after I had made a formal complaint about the staff and I felt that it was border lining on retaliation!
After returning home I did a vast amount of research into the mental and emotional effects of the disease. While I was doing so I came across a quote from a psychiatrist that stated "To keep one physically alive for a psychological death is not a medical success". That quote alone summed up nearly every feeling that I had! I then contacted family advocacy at the hospital and further expressed my concerns about the way our children's emotional and mental states were being disregarded, and passed along much of the information that I had found and further request help in effecting changes in the treatment of our children at this hospital. I also asked for help in starting a new family advisory group for such purposes. I received a single e-mail back stating she would look into it and nothing further. A few days later I received correspondence vial U.S. Mail stating that all of my formal concerns had been addressed and they should no longer be an issue.
Fast forward to this past Saturday, we came into the ER with complications again that are stemming from my sons depression and his unwilling to cooperate without 100% supervision all day long. Immediately after being admitted and placed in a room we saw an intern who had come to the room and began examining my son, and guess what no gloves, no gown, no dedicated stethoscope, and no washing of the hands! I thought to myself, "really, again"! However I did not say anything at that time, I wrote it off as being a one time thing due to her possibly being tired because it was 2:30 in the morning. Later that morning at 8ish the RT came in and again no protocols were followed! Then one of the supervising pulmonary specialist came in the room with the same intern, and again neither one followed the protocols! At this point I became extremely irritated but I kept my mouth shut for fear of not being able to address the issue in a congenial manner. Then this morning I day nurse came in to tell us that we needed to get ready to go for placement of a PICC line, and they would come get us in 20 minutes. Exactly 2 minutes later she returned to tell us to hurry up that they were already here! I told her that they would have to wait a few minutes for us to get dressed. Immediately after that a phlebotomist came in to draw a trough. She called my son by his first name instead of what he goes by which is Colton. I corrected her on this and she politely said I should have the nurse put it on the chart. I responded by saying that I have been asking them to do that for 10 F'n years. I know! I was wrong for dropping the F bomb and I apologized a few minutes later after I realized what I said, But you got to keep in mind that at this point I have been up for about 48-50 hrs straight and I'm really cranky. In the mean time she had gone to the nurse and told her to put "COLTON" on his chart. The nurse then came in and proceeded to tell me that they had to use his first name and that was basically that, I told her I really did not want to discuss it right now and asked her to please leave. She continued so I asked her to leave again to no avail, at this point I told her to get out. We then went to get the PICC placed and returned to find that we had a new nurse. My son and I decided that we were exhausted and we both tried to take naps.
I could not sleep and decided to get up. Shortly after doing so I had the head of security services come to my room and ask to speak to me in private, so I complied, although I was dumbfounded as to why! She told me that I had cussed the staff as well as made one feel threatened. I told her that I had in fact used the F word but that I had also apologized to the staff member for it. I also told her that I was totally stumped as to why someone had felt threatened by me? As I tried to explained my side of the events of the morning I was basically met by a wall and threatened with the "behavioral contract" again. I also told her that I thought that it was almost humorous to me because I was the one that only yesterday was trying to comfort another parent who is a friend of ours because she was cussing up a storm in the hall and stated that if they did not get her daughter to surgery to remove the infected Port o cath soon that they would probably be calling the police on her! (this is another two page incident created by hospital doctors that I will Spare you from, and believe me she had every right to be miffed!) I also told her as the parent of a patient and our rights that I had the right to refuse service of any kind and to ask or bar anyone from our room. I then went on to tell her that I would do just that if they could not control their staff and make them follow infection protocols! She the stated that if I was not polite about it I would be band from the hospital! So I responded by stating that I would be polite on the first request, and that after that I would order them out of the room, my politeness would depend on the attitude shown to me by the staff. She then again brought up the "behavioral contract" or "banning" me from the hospital for any future impoliteness on my part, so I parted the conversation by stating we'll cross that bridge when we get there! I am by no means a rude person but I do tend to be one to take charge of a situation and show a command presence, I guess it's a curse from being in law enforcement for nearly twenty years! It's a hard habit to break and when it comes to my son I will do what is necessary for him!
I know this is a long story and there is a lot more that has happened concerning staff violation that I have not gone into and you have only heard my side but do you guys think I have been unreasonable?
I am a father of an 11yo boy with fairly severe CF, recently we have been hospitalized 3 times in the last 10 months. I have become increasingly irritated with the staff, including doctors, respiratory techs, phlebotomist, and housekeeping not adhering to infection control protocols. They have not been gowning, gloving up, using hand sanitizers, washing hands, or using a dedicated stethoscope as dictated by infection control protocols when entering the room! On our last two visits I have made complaints concerning these matters and here we are again facing the same issues! It has become such an issue for me that they won't adhere to the rules about spreading infection, yet they demand that we follow the rules about not letting our children be in any proximity of one another. On our last visit he made friends with two other little girls who are CFers. The two other mothers and I made the decision to let our children play with one another and we all remarked how happy they were. We did make them wear mask and took the same precautions that you would when you are in clinic around other CF patients. The doctors response to this was absurd, on our last day when we were getting ready to discharge one of the doctors threatened to make me sign a "behavioral contract" and advised me that if we did not adhere to the rules that it would be at their discretion as to when I was allowed to visit or stay with my son and that it would be on a limited basis as they saw fit. I then became extremely irritated and told him that we as parents had the ultimate say in what our children did in our own rooms! Ultimately I ended up ordering the doctor out of our room until I had calmed down enough to continue to have a rational conversation. In continuing the conversation I told him that it was extremely unfair for the staff to be allowed to "break the rules" and then advise us that we may no longer be welcome to visit our own children! Also told him that treating these children as lepers is not the answer in treating them, and that they were only treating the physical effects of the disease and completely ignoring the emotional and mental afflictions that it poses on them. I told him that by letting our children play together for that short period of time had brought a smile to our children's faces that we had not seen in quite some time. All of this took place after I had made a formal complaint about the staff and I felt that it was border lining on retaliation!
After returning home I did a vast amount of research into the mental and emotional effects of the disease. While I was doing so I came across a quote from a psychiatrist that stated "To keep one physically alive for a psychological death is not a medical success". That quote alone summed up nearly every feeling that I had! I then contacted family advocacy at the hospital and further expressed my concerns about the way our children's emotional and mental states were being disregarded, and passed along much of the information that I had found and further request help in effecting changes in the treatment of our children at this hospital. I also asked for help in starting a new family advisory group for such purposes. I received a single e-mail back stating she would look into it and nothing further. A few days later I received correspondence vial U.S. Mail stating that all of my formal concerns had been addressed and they should no longer be an issue.
Fast forward to this past Saturday, we came into the ER with complications again that are stemming from my sons depression and his unwilling to cooperate without 100% supervision all day long. Immediately after being admitted and placed in a room we saw an intern who had come to the room and began examining my son, and guess what no gloves, no gown, no dedicated stethoscope, and no washing of the hands! I thought to myself, "really, again"! However I did not say anything at that time, I wrote it off as being a one time thing due to her possibly being tired because it was 2:30 in the morning. Later that morning at 8ish the RT came in and again no protocols were followed! Then one of the supervising pulmonary specialist came in the room with the same intern, and again neither one followed the protocols! At this point I became extremely irritated but I kept my mouth shut for fear of not being able to address the issue in a congenial manner. Then this morning I day nurse came in to tell us that we needed to get ready to go for placement of a PICC line, and they would come get us in 20 minutes. Exactly 2 minutes later she returned to tell us to hurry up that they were already here! I told her that they would have to wait a few minutes for us to get dressed. Immediately after that a phlebotomist came in to draw a trough. She called my son by his first name instead of what he goes by which is Colton. I corrected her on this and she politely said I should have the nurse put it on the chart. I responded by saying that I have been asking them to do that for 10 F'n years. I know! I was wrong for dropping the F bomb and I apologized a few minutes later after I realized what I said, But you got to keep in mind that at this point I have been up for about 48-50 hrs straight and I'm really cranky. In the mean time she had gone to the nurse and told her to put "COLTON" on his chart. The nurse then came in and proceeded to tell me that they had to use his first name and that was basically that, I told her I really did not want to discuss it right now and asked her to please leave. She continued so I asked her to leave again to no avail, at this point I told her to get out. We then went to get the PICC placed and returned to find that we had a new nurse. My son and I decided that we were exhausted and we both tried to take naps.
I could not sleep and decided to get up. Shortly after doing so I had the head of security services come to my room and ask to speak to me in private, so I complied, although I was dumbfounded as to why! She told me that I had cussed the staff as well as made one feel threatened. I told her that I had in fact used the F word but that I had also apologized to the staff member for it. I also told her that I was totally stumped as to why someone had felt threatened by me? As I tried to explained my side of the events of the morning I was basically met by a wall and threatened with the "behavioral contract" again. I also told her that I thought that it was almost humorous to me because I was the one that only yesterday was trying to comfort another parent who is a friend of ours because she was cussing up a storm in the hall and stated that if they did not get her daughter to surgery to remove the infected Port o cath soon that they would probably be calling the police on her! (this is another two page incident created by hospital doctors that I will Spare you from, and believe me she had every right to be miffed!) I also told her as the parent of a patient and our rights that I had the right to refuse service of any kind and to ask or bar anyone from our room. I then went on to tell her that I would do just that if they could not control their staff and make them follow infection protocols! She the stated that if I was not polite about it I would be band from the hospital! So I responded by stating that I would be polite on the first request, and that after that I would order them out of the room, my politeness would depend on the attitude shown to me by the staff. She then again brought up the "behavioral contract" or "banning" me from the hospital for any future impoliteness on my part, so I parted the conversation by stating we'll cross that bridge when we get there! I am by no means a rude person but I do tend to be one to take charge of a situation and show a command presence, I guess it's a curse from being in law enforcement for nearly twenty years! It's a hard habit to break and when it comes to my son I will do what is necessary for him!
I know this is a long story and there is a lot more that has happened concerning staff violation that I have not gone into and you have only heard my side but do you guys think I have been unreasonable?