Anyone having trouble with their hospital

Jimmya

New member
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?
 

ManFromDublin

New member
no you are not being unreasonable. I have cf, im 23 and i constantly have problems with the staff, mostly the medical team. It seems to be the people who know about cf that bring the stigma. I have been told before that i wasnt welcome at my hospital anymore just for mixing with other cf patients. However when i was younger, it was the staff who encouraged us to mix, but now that medical knowledge has changed, they expect us to forget about our friends like robots. i dont give a shite if cross infection is dangerous, if two adults want to mix with each other then the doctors can get lost.
 

mag6125

New member
You are your child's advocate and it's your job to speak up when you see something not being done right or safely. We have a family council at our cf clinic to bring up these kinds of concerns, etc. Have you talked to your son's cf doc about these things or are they part of the problem? If things dont change maybe it would to good to look into switching clinics/hospitals if you have that option. You're definitely not alone, I'm almost 23 yrs old and my dad is still very protective of me and not afraid to raise his concerns with the docs/nurses, makes me as the child/patient feel safer knowing he's looking out for me when I'm not feeling my best and can't look out for myself. I'm sure it makes your son feel safe too.
 

MaryamsMommy

New member
Our Hospital/ Clinic is pretty good about infection control. I agree if these issues can not be resolved I would look into another clinic. The one thing I would have to disagree with is you allowing your child to even be in the same room "playing" with others with CF. Cross infection is a proven fact. Why take that risk with your child or even put others children at risk. We are the parents and caretakers of our children. At this point we have no right to decide this for them. Once they are adults and they choose for themselves to be in contact with other CFers thats their own choice that they made as a concenting adult. We dont have this right to make this decision for our kids and at 11 they are to young to make it for themselves. Hope your able to figure things out with the hospital.. Seems like it can become an uncomfortable situation where maybe the best thing is....is to part ways...

Karen Mommy to Maryam almost 11 with CF
 

MaryamsMommy

New member
Our Hospital/ Clinic is pretty good about infection control. I agree if these issues can not be resolved I would look into another clinic. The one thing I would have to disagree with is you allowing your child to even be in the same room "playing" with others with CF. Cross infection is a proven fact. Why take that risk with your child or even put others children at risk. We are the parents and caretakers of our children. At this point we have no right to decide this for them. Once they are adults and they choose for themselves to be in contact with other CFers thats their own choice that they made as a concenting adult. We dont have this right to make this decision for our kids and at 11 they are to young to make it for themselves. Hope your able to figure things out with the hospital.. Seems like it can become an uncomfortable situation where maybe the best thing is....is to part ways...
<br />
<br />Karen Mommy to Maryam almost 11 with CF
 

myohmymary

New member
I have gone so far to remove my infant daughter from the hospital bed in the PICU, and leave the hospital. We have changed care centers 3 times and we have finally found one that meets our proactive forward thinking approach to her CF. Not only are we happier, but so is she... and healthier too! We drive over 2 hrs to see the team or for tests, hospitalizations etc, but it is worth it. We have involved our local pediatrician to ensure that immediate monitoring, if needed is done and she runs preliminary tests and errs on the side of caution with advising us to make the trip to see our specialists. BTW... The hospital you are discussing wouldn't happen to be in southern California would it??
 

Jimmya

New member
myohmymary,
Actually the the hospital we have had such trouble with in the past is Texas Children's in Houston.

Fast forward to today, we left there shortly after another incident that took place over the phone that concerned their refusal to refill his scripts. We are now at Hermann Children's in Houston. Things are much better here, do have issues with infection protocol on occasion but not nearly as much in the past! The staff here all try to the best of their ability to make my son as well as I as comfortable as possible. The environment/layout of this place is so pleasant (not clinical feeling)!
 

Printer

New member
Let me see if I get this right. First you let your child "play" with 2 other cf patients then you bitch because an intern in the ER dosen't gown up.

Then you tell us that you have "done extensive research".

Perfect!!! Keep up the good work.
 

CyrilCrodius

New member
Go complain to the administrator or whoever is at the head of that hospital. They would hate bad publicity. You can use that.

However... I find really odd that you worry so much about infection protocol, yet you let your kid play with 2 other CFers. Did you first ask what bacteria they had? Did the other parents ask you? What your son can get from other CFers and what your son can give other CFers can be much worse than anything the personnel can bring over, except maybe for MSRA.

Wearing masks is far from being enough. If they weren't suited up including gloves, I hope that any body part, object, surface that made contact with something that made contact with another CFer was disinfected thoroughly. The doc was probably mad at you because your son is culturing bacterias that the other 2 girls aren't.
Seriously, this is the kind of thing that could cost your kid, or their kid, many years of life.
 

lilro

New member
Everything you said was completely reasonable, with the exception of the name thing. If you've been calling him Colton since he was 1, have you considered getting his name legally changed to that?

Other than that, I would consider changing hospitals ASAP. CPS has taken children for far less, and I'd hate to hear about caring parents lose their child over incompetent hospital staff.
 
Jimmya, so glad you found another center. I know what you mean about the whole environment being different. We had major battles time after time with the center we'd been with since diagnosis of my son at 3.5 months old (he's 13 yrs now). When we finally had been pushed enough and the same crap with advocates just sending a generic letter saying "thanks, everything's taken care of" but nothing was addressed...... I went for a 2nd opinion. We found another center that treats my child as a unique individual. They also treat him with respect and us as parents as well. Hope you get better treatment (medically and personally) for your family. Good for you to go out there and find something new.
 

turtle10000000

New member
Jimya I completely understand what it is you're going through!!! I'm 18 years old now, but I have had a very rough life with CF. I generally get admitted every three months on my good years, other years are every 1-2 months... I do all my treatments and everything but some other genes obviously effect the severity of said CF. Anyway, I have had to fight tooth & nail to get people to listen and ended up leaving a couple hospitals due to their intolerance and BS. I finally have found a great hospital here in Fort Worth (Cook Children's/THR) where the CF care team actually listens to me and takes my recommendations! (instead of just telling me I'm wrong cause I haven't been to medical school- even though I've lived my whole life with the disease!) I could go on for days with you about the idiocy displayed by some of these "care" teams but I actually want to focus on a smaller point you made about CF patients interacting with one-another... I COMPLETELY AGREE WITH YOU!!! When I was younger I always felt left out at school and what-not because of my CF; not one person really understood me. Whenever I would meet another CF patient who would understand me, I would be so ecstatic to finally find someone I could connect with! Unfortunately, the medical world has decided to isolate and contain CF children as if were "lepers" like you said. My parents are always busy and could never do the whole home IV antibiotic program, so for me every admission was 2-3 weeks in the hospital. It was made worse ten-fold when these asinine isolation protocols were put into effect. I truly hate it.... it depressed me, it was really like torture honestly. On top of dealing with a terminable, chronic illness, I was also to be isolated and contained to one room for weeks on end. Not seeing people's faces, being trapped in a small hospital room, feeling like you are a detriment to society and so must be "contained" lest you possibly catch another bug or give someone else a new bug, is degrading and full of ... words can't describe it. Then being told I can't talk to the one group of people that I could relate to? That I couldn't even see them because of "what if" or "this could possibly happen" finally pushed me down the pit of depression. And you know what? You can give all the medicines and treatments in the world to heal a disease, but it'll do crap when the mind is in total disconnect and in a state of sullen decay. CF patients already have to deal with all the physical symptoms and these idiot paranoid doctors come along and tell us we can't congregate, we can't even leave the room because of "what ifs" and "negative possibilities." That throws our mental state into it's own illness.... If I didn't have my faith and God, I wouldn't have been able to take it. But back to my point: Anything is possible and some things are more likely to happen than others. But putting your kid in a bubble to keep them "safe" actually does the opposite. I've talked to many cystic fibrosis pulmonologists about this and they all thought the isolation protocols went over board. One said to me "we already tried the 'boy in the bubble' experiment and it didn't work out too well..." The question is would you rather live to your 30's able to live life and interact with people and get outside of your room, or would you like to live to your 60's but not be able to be exposed to other people, to people who can relate to you, to run around outside but instead be stuck in your room afraid to be "exposed" to possible infections? I'd rather live a short quality life with people than a long isolated life by myself. I agree with wearing masks around other kids with CF and washing your hands; pretty much all your basic hygiene everyone should have anyway. Being around another cfer isn't going to get you sick (unless you're kissing, directly coughing on one another or sleeping in a tent together for the night) and isolating us from every possible source of infection is impractical, impossible, and just plain stupid. If my mom smothered me and never let me play outside or in the grass for fear of me catching another infection, my life would be empty and meaningless. There are basic precautions that are common sense with CF, but isolating every source of infection, putting your children in a bubble and not allowing them to socialize and be with others like them is only hurting your kids. Truth is that CF kids need to be exposed to common infections, lest they get sick later in life when they can't fight said infection. Our bodies need to be exposed to common bacteria and infections in order to build up our immune system so that we can fight these and other illnesses in the future. If we completely isolate every CF kid, then they will die, just like the boy in the bubble who grew up and had no exposure to pathogens and so died when he finally left the bubble (yes it actually is a true medical experiment/story google it if you don't believe me.) For people who think I am wrong or don't know what i'm talking about, consider this: my father is a neonatologist (Premature baby doctor) who has lived his life with medicine and CF; I have 6 siblings, 4 of which have CF like me homozygous deltf508 in which I am the sickest and am number 4. Even though I'm sick with multi-drug resistant bacteria (pseudomonas A) all of my siblings have their OWN separate strain of bacteria which each have their own individual sensitivities and resistances. So a family of 7, 5 with CF, has lived together our whole lives. One has never been admitted except for overnight sinus surgery recovery and is 13. One was only admitted after reaching adulthood, and the other 2 admitted annually for routine antibiotics. We all have our own individual strain of bacteria, staph included. Not one of us have identical strains. At most my siblings strains are only resistant to two antibiotics and nothing else (the staph is sensitive to everything) yet my strain is only sensitive to 3 antibiotics. We lived in the same rooms, on bunkbeds, shared meals together, for pete's sake when we were younger and lazy we sometimes used the same nebcups (don't worry we don't anymore now that we are older and know better) and used the same tubing. We shared everything! Living in close quarters and never being isolated, yet all of us have our own strain of bacteria and only one of us (me) has severe CF- heck three of the kids don't even look like they have CF! Another thing I wanted to point out was something a doctor explained to me about bacterial strains: he said that the bacteria in my lungs have colonized the area, made it into there own fortress really. If another strain of bacteria is introduced or gets inside me, the likelyhood is it'll die out because it can't compete with the strain already present in my lungs. Think of it as a group of 10 rebels attacking a reinforced Fortress of 100 men head on- the likelyhood is the rebels will lose. I suppose I wanted to write all this to not only agree with the opening post, but to bring awareness to the ineffective and detrimental policy of isolation to CF patients. It doesn't work, it takes the kid away from socializing and makes them think they are a threat to others, it's demeaning, depressing, and it takes out the quality of life in the patient. I don't want to live in a bubble for 60 years!!! Give me 30 years, or even 20 years, if it means I give live a quality life with my family and friends. The healthcare teams for CF need to concentrate on not just prolonging a CFer's life, but also on allowing and helping to support a quality life. For parents that are afraid of their children getting sick, please don't isolate them. Take common sense precautions but let them live their life! There is the possibility that a meteor will strike them, or a car will smash into your house, or a freaking sinkhole will develop on your property. Don't let paranoia prevent your child from being happy and communicating with others like themselves. Isolating them will only destroy them on the inside and leave them alone in despair.... Don't allow that to happen! Let CFer's take some form of control in their lives and live a life of quality rather than just longevity!!!
 
P

Patti Rowland

Guest
myohmymary,
Actually the the hospital we have had such trouble with in the past is Texas Children's in Houston.

Fast forward to today, we left there shortly after another incident that took place over the phone that concerned their refusal to refill his scripts. We are now at Hermann Children's in Houston. Things are much better here, do have issues with infection protocol on occasion but not nearly as much in the past! The staff here all try to the best of their ability to make my son as well as I as comfortable as possible. The environment/layout of this place is so pleasant (not clinical feeling)!
My daughter and I also were disappointed with the cleanliness and practices at the hospital in Dallas. I finally took her home and administered the IV antibiotics at home. The home health care people came and trained me - it was easy with the new "fusion balls" they give you. Insurance covered everything. I would not let my daughter visit the other rooms but she and her "new" cf friends facebook chatted the whole time and still stay in touch. You have to be your childs advocate because the state of our healthcare is deplorable. When we first entered her hospital room there was dirty kleenex, pills and blood on the floor. I pointed it out and they acted annoyed that i noticed. When the nurse came in to remove her piic line he put on his gloves, then touched the bedrailing, the tv remote and other equipment, then began to approach her arm. I said, new gloves please! They are not on your hands to protect YOUR hands. I was incredulous. Then the non-english speaking lady who came into clean the room started with one rag on the hazmat box, the wastebasket in the bathroom, the toilet, the tub and last the sink and faucets. IN THAT ORDER! When i complained to her she said " You no like my work?" ahhh NO! I did not.
That all being said, your child will look to you to set the mood. A lot of these conversations must take place out of earshot of your child or they will also become alarmed, angry and eventually even more depressed of their CF.
 

megan420

New member
I am struggling with this same problem; Im almost 24 with CF. I was diagnosed at 6 months at the hospital I go to right now but the problems Im having are just getting worse and more frequent. My main doctor has just retired and Im stuck with idiots and mean people. I have reported a couple things but don't see much point in it anymore because no1 listens to me and its the doctors word over mine. Im so torn on what to do. I don't know what the whole process of changing hospitals would be, if its hard or if the original hospital can tell the new hospital bad things about you. I hope you find answers too!! Good Luck!!
 
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