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- Thread starter anonymous
- Start date
CFHockeyMom
New member
Is the hospital you're at a CF center? That can make a big difference. If they aren't then you need to advocate for you child and if that means stepping on some toes or offending someone then so be it. If they are a center then the level of care should be appropriate. If it's not then you should discuss that with your CF Dr. We had an incident with the level of care we recieved while my son was under the care of the surgical staff. The short version is that his surgery was delayed and instead of going 12 hours without food, he ended up going closer to 24 hours. It was torture for him and us. We finally had to page our CF Dr. and alert her to the situation. Our son was in surgery within minutes of our contacting the CF Dr. and she contacted the hospitals patient advocacy group to file a complaint on our behalf. They followed up with us the next day.
thefrogprincess
New member
When my brother was in the hospital as a baby for mercomium illius (sp??) my parents got so irrate at the staff that only the head of pediatric surgery at Stanford was allowed to handle his case. Sometimes you just can't be polite and get your point across.
CFHockeyMom
New member
I'm really surprised to hear that about a CF center! We too are on the same floor with the other CFers. They allow us to bring in our own enzymes so we have them at meals and don't have to wait around on them. They always stick to our med schedule. There's a brief interview process when we're first admitted to gather all the schedule info then the staff sticks to it.
One problem we continually have is with the hep lock after IV antibiotics. My son has terribly small veins and the hep lock is very painful if they just "push" it in. We've repeatedly asked that it be administered slowly and there's always a note in his chart but somehow it's ignored so we have to remind them constantly. I feel like a nag and hate doing it but if i don't who will?
One problem we continually have is with the hep lock after IV antibiotics. My son has terribly small veins and the hep lock is very painful if they just "push" it in. We've repeatedly asked that it be administered slowly and there's always a note in his chart but somehow it's ignored so we have to remind them constantly. I feel like a nag and hate doing it but if i don't who will?
NoDayButToday
New member
I am also allowed to keep enzymes at my bedside, which is great because I tend to snack a LOT, and also because my mom stays the night, so she brings food from the 'outside' for me, and that usually doesn't coincide with the meal that comes from the cafeteria.
As for hep-lock, what about having your son count slowly to five while they push it in? I vaguely remember doing that when I was little and still had plain old IVs (as opposed to PICCs). Me counting sort of set the pace for the nurses, and also helped me be calm that the burning would be done with, once I got to five. Nothing beats holding my mom's hand though LOL.
As for hep-lock, what about having your son count slowly to five while they push it in? I vaguely remember doing that when I was little and still had plain old IVs (as opposed to PICCs). Me counting sort of set the pace for the nurses, and also helped me be calm that the burning would be done with, once I got to five. Nothing beats holding my mom's hand though LOL.
I'd love to know what to do about that, too. They kept us so busy with tests, P.T., blah, blah, blah that we would sometimes miss the hours the cafeteria would even deliver food. I definately think there should be scheduled times for people with CF to have their meals and that they should be able to order snacks anytime but what can we do? We had a miserable time last time my daughter was in and it could have been corrected so simply. The nursing staff needs to follow a schedule to the tee for these children that have to go through this. Hospitals need to change their policies pertaining to the cafeteria for the children, too. Enzymes should definately be left in the room. I guess we all need to just speak our minds and see what happens.
Its going to take at least one person, if not more to bring this to the attention to the administrators of the floor you are on. I work on a cancer/CF ward at a hospital and I can tell you this as a staff member. Regardless of how many times, I as a nurse relay to my supervisors what the patients are complaining about and suggestions they have for things to be done differently; if it doesn't come directly from the patient to a supervisor in a WRITTEN form, listing both problems and suggestions for resolution-it is pointless for me to even waste my time relaying the information. For some, very unfortunate reason-the information that is relayed from patients to nurses, then from the nurses to the suprevisors looses it's credability.
It can be very difficult to voice your opinion if you are a quiet, laid back and non-confrontational person, but this is your child's health and well being. Maybe instead of "confronting" the staff with this, you could write down the things that you think just don't work well for a pediatric CF floor and how you think things can be improved. Although it is not your job to fix the problem, hospitals get so stuck iin their ways of doing things that they don't really know how to do things differently once something is pointed out. If you can assist and offer some suggestions, the changes may actually happen and they may happen faster.
CFhockeymom, when you say "the heplock is very painful if they just push it in", are you refering to when they are administering something into the IV thorough the hep lock or when they are hooking the IV up to the hep lock in his hand? I am curious only because the hep lock devices that my hospital uses requires you to "push" in and then twist when you are hooking up the IV or administering meds through a syringe into the IV. Some patients are really sensitive (I am one of them) and it helps if the staff gets a good secure grip on the hep lock to kind of hold it into place, it won't move when the "push" the tubing/syringe in. Maybe if you can describe the situation that is causing pain a bit more, I can offer some suggestions. Also, have you asked the hospital staff to show you how to hook it up? The really should be showing you so if your son is ever on home antibiotics, you know how. It may also relieve some fears and anticipation if you can connect it for your son. Most hospitals will let you have that kind of active part in their care. Just a few thoughts.
Julie (wife to Mark 24 w/CF)
It can be very difficult to voice your opinion if you are a quiet, laid back and non-confrontational person, but this is your child's health and well being. Maybe instead of "confronting" the staff with this, you could write down the things that you think just don't work well for a pediatric CF floor and how you think things can be improved. Although it is not your job to fix the problem, hospitals get so stuck iin their ways of doing things that they don't really know how to do things differently once something is pointed out. If you can assist and offer some suggestions, the changes may actually happen and they may happen faster.
CFhockeymom, when you say "the heplock is very painful if they just push it in", are you refering to when they are administering something into the IV thorough the hep lock or when they are hooking the IV up to the hep lock in his hand? I am curious only because the hep lock devices that my hospital uses requires you to "push" in and then twist when you are hooking up the IV or administering meds through a syringe into the IV. Some patients are really sensitive (I am one of them) and it helps if the staff gets a good secure grip on the hep lock to kind of hold it into place, it won't move when the "push" the tubing/syringe in. Maybe if you can describe the situation that is causing pain a bit more, I can offer some suggestions. Also, have you asked the hospital staff to show you how to hook it up? The really should be showing you so if your son is ever on home antibiotics, you know how. It may also relieve some fears and anticipation if you can connect it for your son. Most hospitals will let you have that kind of active part in their care. Just a few thoughts.
Julie (wife to Mark 24 w/CF)
NoDayButToday
New member
Julie- they have cancer and CF patients together? My hospital has a floor solely for cancer patients, and the CF patients aren't allowed to room on that floor. It's strictly 'cancer only'.
They let you use your enzymes from home. I would do that when they wouldn't bring my sons with their food. They would freak out and tell me they have a strict policy against use of meds from home. I would tell them I have strict feeding times and a policy against my kids not getting their meds on time.`````
Coll, that's the military for you.... They figure that since cancer patient have comprimised immune systems when on chemo, and most CFers have a "lowered" immune system when they are in the hospital; "LETS PUT THEM TOGETHER". I really don't understand the reasoning behind that, but the cancer patients are on one side of the ward and the CF patients on the other (I guess that's better than sharing rooms), and we very rarely have CF patients. Maybe one or two every 6 months-maybe that's part of the reason. Either way, I don't agree with it but there isn't anything I can do about it.
Julie
Julie
S
SeasonsOfLove
Guest
One thing that Coll & her friend used to do when they were little to deal with heparin burn is what we called the "Beauty Queen Wave" - somehow waving like a beauty queen (w/fingers splayed and moving around) seemed to help - or at least it distracted them and was kind of fun!
-Kathy (who loves to hold Coll's hand and wishes she could do more <img src="i/expressions/heart.gif" border="0"> )
-Kathy (who loves to hold Coll's hand and wishes she could do more <img src="i/expressions/heart.gif" border="0"> )