I need to vent, Yesterday I called my cf coordinator to ask her questions about my kids because they were sick. We talked for about 45 mins. I told her what was going on with my kids, they both had really bad colds, constant coughing and gagging, snezzing. They looked miserable. Anyway she said they needed to be on something, she was going to page the doctor and call something in to the pharmacy. This was at 1:30p.m. at 4 I call the pharmacy no medicine. I call the office back to see what the hold up is, vociemail goes on, which says its full and I can't leave a message. 6 o'clock comes and goes to medicine. So I page my ped. to try to get medicine from her, by this point Gabrielle is laying on the couch barely moving she fels so bad, All she says is please get my doctor I feel so sick. The doctors service calls back about 30 mins later. They take all the info on the kids and whats going on with them. I tell them about talking with Maureen cf coordinator, The nurse on the phone says that I have to go through the cf team because i already spoke to them earlier. I told her I couldn't get a hold of them I tried. She say she was going to get them paged. It's now 8'oclock. The get Maureen, she says the doctor just called her 5 mins before with the presciption. So I get the meds give to the kids when they go to bed. At 2:30 a.m. Zacharys wakes up from his sleep vomiting all over my floor as I walk him to the bathroom he starts vomiting all over the floor on the way, get to the bathroom she vom iting all over it. Sits on the toilet it starts coming out both ends. I call the sevice tell them all the info give them my number, the lady on the phone says hold on. 2 mins later she hangs up on my. Now I really beyond mad. 5mins later they call back with the doctor. She is half asleep and barely making sense. She tells my call your ped this isn't her problem she only tells with lung issues, he has the flu call the ped not her. Well if I'm not mistaken a lung issue started the whole thing earlier in day, am I not right. Anyhow to make a long story short she was doing anything for him. Last time I checked she was his doctor and told me to call when ever I neede anything, that I should call them first when the kids are sick because of the cf. which is what I did. But no , no help at all. Now I am fuming mad I am so pissed off. Sorry I needed to vent.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
upset with cf team
- Thread starter Jenni
- Start date
I had a similiar experience this week with my 17 month-old son. I paged the CF nurse at lunch on Tuesday saying he is coughing so bad that I need to take him that afternoon to the clinic and if they didn't get back to me it is so bad I would have to take him into the ER. She said she would talk to the doctor and call me back. She called back TWO DAYS later on Thursday. What she didn't know was Jack's cough got much better soon after I spoke with her so I was fine with not bringing him in. I did bring him in to the CF clinic on Friday and his doctor and I think he was having bronchial spasms due to his cold and the start of Tobi. My son also threw up many times this week due to his excessive coughing.
Anyway, I know your frustration. I have been through this before with my daughter. We switched doctors over it because the nurse wouldn't return my calls. As it happened it was the "fired" nurse who was taking my children's sweet new nurse calls this week. What I have learned is that Fridays, Saturdays and Sundays are not the time for our kids to get sick. That goes for when they are in the hospital too. On the weekend I then have a resident doctor who knows almost nothing about cf who is there to answer my questions and decide on medications. Hope your little ones are feeling better!
Sharon, mom to Sophia, 3 and Jack, 17 months both with cf
Anyway, I know your frustration. I have been through this before with my daughter. We switched doctors over it because the nurse wouldn't return my calls. As it happened it was the "fired" nurse who was taking my children's sweet new nurse calls this week. What I have learned is that Fridays, Saturdays and Sundays are not the time for our kids to get sick. That goes for when they are in the hospital too. On the weekend I then have a resident doctor who knows almost nothing about cf who is there to answer my questions and decide on medications. Hope your little ones are feeling better!
Sharon, mom to Sophia, 3 and Jack, 17 months both with cf
Hi Jenni,
I'm going to e-mail you privately about the doc stuff, but I hope things are better today. My kids are also getting over the vomiting bug. It's hard when you have to decide who to call, the CF team or the ped. I think you did the right thing by calling the CF team first about the respiratory stuff. Maybe the kids also caught a stomach flu bug. It is going around like crazy! Luckily the vomiting bug doesn't stick around more than about 48 hours. If the kids still have a lot of respiratory issues after that I would keep on the CF team.
The thing I have learned is that although Sami has CF she also is going to get the same "normal" sicknesses that her sisters get. And she usually reacts the same way (for ex. they vomited for 12 hours, she vomits for 12 hours). I know it's harder for you when all the kids have CF, but as time goes on, you'll start to see a pattern of what a true CF exasberation looks like and how it affects each of your children. Take Care,
Maria (mother of three daughters, the youngest, Samantha w/CF)
I'm going to e-mail you privately about the doc stuff, but I hope things are better today. My kids are also getting over the vomiting bug. It's hard when you have to decide who to call, the CF team or the ped. I think you did the right thing by calling the CF team first about the respiratory stuff. Maybe the kids also caught a stomach flu bug. It is going around like crazy! Luckily the vomiting bug doesn't stick around more than about 48 hours. If the kids still have a lot of respiratory issues after that I would keep on the CF team.
The thing I have learned is that although Sami has CF she also is going to get the same "normal" sicknesses that her sisters get. And she usually reacts the same way (for ex. they vomited for 12 hours, she vomits for 12 hours). I know it's harder for you when all the kids have CF, but as time goes on, you'll start to see a pattern of what a true CF exasberation looks like and how it affects each of your children. Take Care,
Maria (mother of three daughters, the youngest, Samantha w/CF)
When my youngest started losing weight I called cf clinic. Over that weekend he went from skinny to bones. went to peds and they were not happy. Cf clinic couldn't see us for a week. Then they tried to admit him. The drs actully stared yelling at each other outside of the room. I was mad because we should be involved in all of care planning. But they are great most of the time.
2sickkids
2sickkids
I am so sorry you had to go through all of this... if i were you i think id be finding a more caring doc.. it doenst sound like you are having good luck with the one you have.. I dont think ive ever called the cf clinic when calebs been sick.. the only time i deal with the cf clinic is every 3 months when he is seen.. i go to his pediatritan when he needs anything, she has always been really supportive and she always calls the cf clinic to update them which makes it easier on me cause i dont have to track them down.... His pediatritan is the one who checked him out in the hospital when he was born and the only one hes ever been to, so she knows him just as well as me... when he was diagnosed she gave me her home # cell # and pager # and told me if i ever needed anything day or night not to hesitate to call, this is the kind of dr all cfers need...We as parents have enough to deal with, without having all the extra added stress.. if youd ever like to talk my email addy is Melissa1979@adelphia.net...
HOPE YOUR KIDS ARE FEELING BETTER!!!!!!
Melissa
HOPE YOUR KIDS ARE FEELING BETTER!!!!!!
Melissa
Thank you all for your support and kind words, I think I'm going to look into get a new cf team. One that gets back to me a little sooner and values my children and my concerns as a parent. I've let doctors screw with me for too long, I'm going to take the front seat on this issue. My kids mean too much to me for doctors to not be taking their problems seriously.
I am going to see a new cf team on Tuesday, I am already impressed and haven't even met with them yet. The doctor has called me 2 already in the past 2 days to ask questions about the children so she would be ready, and see if she would have to order any test. I have a good feeling about this. I will keep you informed.
NoDayButToday
New member
I'm so glad you are happy with the new team! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hate to think about the number of times this has happend to me as well. It actually took at CF Nurse Practicioner 2 days to call me back onetime and I make sure I complain to the doctor every time. I took the time to find an aggressive pediatrican and now that is always my first stop. I can always get an appointment because they have night and weekend hours. She can always rule out a lung infection and if it is more serious will direct me to the CF Center. We go to Childrens Hospital of Philadelphia which is ranked as one of the best in the Country but they are really the pits. I like my doctor there but have seriously thought of changing because of the lack of concern from anyone else there. I am also not a parent who calls all the time. My son seems to have a mild strain of CF and I only call them when he is really sick so they can't say I am a frequest flyer. I have thought about switching to Dupont Childrens Hospital in Wilmington, DE. Has anyone ever gone there and do they like them?