Got the boot from BABY CF CLINIC DAY

[imported_Momto2]

At the adult CF clinic I attend, you are masked the entire time, unless you are in the patient room. Everyone who enters is gowned/gloved, etc. If they DIDNT take these precautions, I would not go the the CF clinic. I never did until I was in my mid-30's because I thought they were too lax in cross-contamination prevention, then they changed the rules. Frankly, if my child had CF, I would not take them anywhere in the vicinity of another kid with CF unless all parties were masked and constantly resanitizing hands. Its just too risky.

 

[hmw]

Sarah~ to get this straight~ all the kids sit out in a huge shared waiting room for an indeterminate amount of time (so for all you know, you could have someone else with cf right next to you and at the least many in the room are sick with varied illnesses), and then no one that comes in to care for your child is gowned, gloved or masked?! No, IMO, that is NOT acceptable. :-(

 

[hmw]

Sarah~ to get this straight~ all the kids sit out in a huge shared waiting room for an indeterminate amount of time (so for all you know, you could have someone else with cf right next to you and at the least many in the room are sick with varied illnesses), and then no one that comes in to care for your child is gowned, gloved or masked?! No, IMO, that is NOT acceptable. :-(

 

[hmw]

Sarah~ to get this straight~ all the kids sit out in a huge shared waiting room for an indeterminate amount of time (so for all you know, you could have someone else with cf right next to you and at the least many in the room are sick with varied illnesses), and then no one that comes in to care for your child is gowned, gloved or masked?! No, IMO, that is NOT acceptable. :-(

 

[Ratatosk]

When DS was a baby, the local accreditted CF clinic had a cf day once a month, with a small waiting room -- so we kept DS in his car seat carrier off to the side or in the hall. We'd be assigned a room with a crib, where we'd stay all morning and most of the afternoon unless we had to tromp down to the lab or xray. One of the nurses let it slip that when DS got older he'd no longer get a room to himself that patients go from room to room to meet the staff. Eeek! There reasonining was that noboby had cepacia and if they did they wouldn't be allowed to come to cf clinic days.

As he got a little older he got more mobile it got more difficult to keep him contained. We once walked out of the clinic after a 45 minute wait in the tiny waiting room. Plus they had TOYS in the waiting room and a staff member once tried to bring some into our room. The last time we went the waiting room was filthy and the nurse tried to switch us to another room with a teen with a very productive cough who wasn't feeling well, without cleaning the room. We never went back. I take ds to the cf doctor at the peds clinic a couple times a year and he goes to the big city a couple times a year for his primary cf doctor. Last week for the first time in 8 years we actually met another person wcf across the hall -- otherwise we're assigned a room immediately.

 

[Ratatosk]

When DS was a baby, the local accreditted CF clinic had a cf day once a month, with a small waiting room -- so we kept DS in his car seat carrier off to the side or in the hall. We'd be assigned a room with a crib, where we'd stay all morning and most of the afternoon unless we had to tromp down to the lab or xray. One of the nurses let it slip that when DS got older he'd no longer get a room to himself that patients go from room to room to meet the staff. Eeek! There reasonining was that noboby had cepacia and if they did they wouldn't be allowed to come to cf clinic days.

As he got a little older he got more mobile it got more difficult to keep him contained. We once walked out of the clinic after a 45 minute wait in the tiny waiting room. Plus they had TOYS in the waiting room and a staff member once tried to bring some into our room. The last time we went the waiting room was filthy and the nurse tried to switch us to another room with a teen with a very productive cough who wasn't feeling well, without cleaning the room. We never went back. I take ds to the cf doctor at the peds clinic a couple times a year and he goes to the big city a couple times a year for his primary cf doctor. Last week for the first time in 8 years we actually met another person wcf across the hall -- otherwise we're assigned a room immediately.

 

[Ratatosk]

When DS was a baby, the local accreditted CF clinic had a cf day once a month, with a small waiting room -- so we kept DS in his car seat carrier off to the side or in the hall. We'd be assigned a room with a crib, where we'd stay all morning and most of the afternoon unless we had to tromp down to the lab or xray. One of the nurses let it slip that when DS got older he'd no longer get a room to himself that patients go from room to room to meet the staff. Eeek! There reasonining was that noboby had cepacia and if they did they wouldn't be allowed to come to cf clinic days.
<br />
<br />As he got a little older he got more mobile it got more difficult to keep him contained. We once walked out of the clinic after a 45 minute wait in the tiny waiting room. Plus they had TOYS in the waiting room and a staff member once tried to bring some into our room. The last time we went the waiting room was filthy and the nurse tried to switch us to another room with a teen with a very productive cough who wasn't feeling well, without cleaning the room. We never went back. I take ds to the cf doctor at the peds clinic a couple times a year and he goes to the big city a couple times a year for his primary cf doctor. Last week for the first time in 8 years we actually met another person wcf across the hall -- otherwise we're assigned a room immediately.

 

[LouLou]

Just a thought...if you feel your plate is too full to change clinic protocols but you aren't comfortable with communal waiting rooms here's a suggestion that I used to do at the UPENN clnic for adults which did not have people mask and had people wait in communal waiting rooms. I would simply tell the receptionist I would be waiting elsewhere or outside if the weather was nice and they could call my cell phone when they were ready for me. Also I always use a bathroom far away from the clinic. Even though my son is 4 he still rides in a stroller at clinic and is not allowed out until we get in a room. He wears a mask as do I but the clinic does not require it. I would also take a large trash bag to put all my belongings in since I went from work and had my work bag and winter coat with me which I didn't want touching a thing. Also beware of clipboards at clinic. It's better to decline the clipboard and use your purse or something semi firm to write on. Also, remember clinics do care about what you write on a comment sheet so if you feel it is behind the times let them know on your comment sheet.

 

[LouLou]

Just a thought...if you feel your plate is too full to change clinic protocols but you aren't comfortable with communal waiting rooms here's a suggestion that I used to do at the UPENN clnic for adults which did not have people mask and had people wait in communal waiting rooms. I would simply tell the receptionist I would be waiting elsewhere or outside if the weather was nice and they could call my cell phone when they were ready for me. Also I always use a bathroom far away from the clinic. Even though my son is 4 he still rides in a stroller at clinic and is not allowed out until we get in a room. He wears a mask as do I but the clinic does not require it. I would also take a large trash bag to put all my belongings in since I went from work and had my work bag and winter coat with me which I didn't want touching a thing. Also beware of clipboards at clinic. It's better to decline the clipboard and use your purse or something semi firm to write on. Also, remember clinics do care about what you write on a comment sheet so if you feel it is behind the times let them know on your comment sheet.

 

[LouLou]

Just a thought...if you feel your plate is too full to change clinic protocols but you aren't comfortable with communal waiting rooms here's a suggestion that I used to do at the UPENN clnic for adults which did not have people mask and had people wait in communal waiting rooms. I would simply tell the receptionist I would be waiting elsewhere or outside if the weather was nice and they could call my cell phone when they were ready for me. Also I always use a bathroom far away from the clinic. Even though my son is 4 he still rides in a stroller at clinic and is not allowed out until we get in a room. He wears a mask as do I but the clinic does not require it. I would also take a large trash bag to put all my belongings in since I went from work and had my work bag and winter coat with me which I didn't want touching a thing. Also beware of clipboards at clinic. It's better to decline the clipboard and use your purse or something semi firm to write on. Also, remember clinics do care about what you write on a comment sheet so if you feel it is behind the times let them know on your comment sheet.

 

[ajb900]

I might be a little late with this, but I wanted to weigh in. I am very confident in my CF clinic which is held every Monday afternoon. When we first started going we were nervous about being in the waiting room (our CF doc is in a pulmonologist group and he's the only peds pulm), but then they explained how the clinic works. They make the appts FOR us and base the times and day on positive cultures - we have never been given a choice on when we wanted to come. Since my daughter has never cultured pos for anything, we are almost always one of the first appts for the day and I rarely see any other children (pos or not). We have never been asked to put a mask on our daughter nor has anyone masked/gowned/gloved up upon entering our exam room (unless attempting to do blood work). We also are not there ALL day. We actually went to clinic yesterday - our appt was at 1:00 and I was getting in the car to leave at 2:20. Maybe the clinic SarahProcter goes to does this same type of scheduling?! Just a thought!

 

[ajb900]

I might be a little late with this, but I wanted to weigh in. I am very confident in my CF clinic which is held every Monday afternoon. When we first started going we were nervous about being in the waiting room (our CF doc is in a pulmonologist group and he's the only peds pulm), but then they explained how the clinic works. They make the appts FOR us and base the times and day on positive cultures - we have never been given a choice on when we wanted to come. Since my daughter has never cultured pos for anything, we are almost always one of the first appts for the day and I rarely see any other children (pos or not). We have never been asked to put a mask on our daughter nor has anyone masked/gowned/gloved up upon entering our exam room (unless attempting to do blood work). We also are not there ALL day. We actually went to clinic yesterday - our appt was at 1:00 and I was getting in the car to leave at 2:20. Maybe the clinic SarahProcter goes to does this same type of scheduling?! Just a thought!

 

[ajb900]

I might be a little late with this, but I wanted to weigh in. I am very confident in my CF clinic which is held every Monday afternoon. When we first started going we were nervous about being in the waiting room (our CF doc is in a pulmonologist group and he's the only peds pulm), but then they explained how the clinic works. They make the appts FOR us and base the times and day on positive cultures - we have never been given a choice on when we wanted to come. Since my daughter has never cultured pos for anything, we are almost always one of the first appts for the day and I rarely see any other children (pos or not). We have never been asked to put a mask on our daughter nor has anyone masked/gowned/gloved up upon entering our exam room (unless attempting to do blood work). We also are not there ALL day. We actually went to clinic yesterday - our appt was at 1:00 and I was getting in the car to leave at 2:20. Maybe the clinic SarahProcter goes to does this same type of scheduling?! Just a thought!

 

[ajb900]

I might be a little late with this, but I wanted to weigh in. I am very confident in my CF clinic which is held every Monday afternoon. When we first started going we were nervous about being in the waiting room (our CF doc is in a pulmonologist group and he's the only peds pulm), but then they explained how the clinic works. They make the appts FOR us and base the times and day on positive cultures - we have never been given a choice on when we wanted to come. Since my daughter has never cultured pos for anything, we are almost always one of the first appts for the day and I rarely see any other children (pos or not). We have never been asked to put a mask on our daughter nor has anyone masked/gowned/gloved up upon entering our exam room (unless attempting to do blood work). We also are not there ALL day. We actually went to clinic yesterday - our appt was at 1:00 and I was getting in the car to leave at 2:20. Maybe the clinic SarahProcter goes to does this same type of scheduling?! Just a thought!

 

[ajb900]

I might be a little late with this, but I wanted to weigh in. I am very confident in my CF clinic which is held every Monday afternoon. When we first started going we were nervous about being in the waiting room (our CF doc is in a pulmonologist group and he's the only peds pulm), but then they explained how the clinic works. They make the appts FOR us and base the times and day on positive cultures - we have never been given a choice on when we wanted to come. Since my daughter has never cultured pos for anything, we are almost always one of the first appts for the day and I rarely see any other children (pos or not). We have never been asked to put a mask on our daughter nor has anyone masked/gowned/gloved up upon entering our exam room (unless attempting to do blood work). We also are not there ALL day. We actually went to clinic yesterday - our appt was at 1:00 and I was getting in the car to leave at 2:20. Maybe the clinic SarahProcter goes to does this same type of scheduling?! Just a thought!

 

[ajb900]

I might be a little late with this, but I wanted to weigh in. I am very confident in my CF clinic which is held every Monday afternoon. When we first started going we were nervous about being in the waiting room (our CF doc is in a pulmonologist group and he's the only peds pulm), but then they explained how the clinic works. They make the appts FOR us and base the times and day on positive cultures - we have never been given a choice on when we wanted to come. Since my daughter has never cultured pos for anything, we are almost always one of the first appts for the day and I rarely see any other children (pos or not). We have never been asked to put a mask on our daughter nor has anyone masked/gowned/gloved up upon entering our exam room (unless attempting to do blood work). We also are not there ALL day. We actually went to clinic yesterday - our appt was at 1:00 and I was getting in the car to leave at 2:20. Maybe the clinic SarahProcter goes to does this same type of scheduling?! Just a thought!

 

[hmw]

Sputum cultures are notoriously unreliable~ a throat swab may be normal when a good productive sputum sample may show up something completely different.

There is also always that time between negative culture and first positive culture... when bugs can be spread before anyone knows they are there. In other words, if someone goes to clinic with a hx of clean cultures and no one takes precautions- and then their sputum ends up growing out PA or another nasty bug for the first time- ANY staff that has interacted with that child without taking precautions and then goes on to interact with another child can spread whatever bugs they may have.

We aren't there all day either- we sign in and are taken in for pft's, height and weight nearly immediately; then they take you right into your exam room for the rest of the visit. The whole appt averages about 2hrs if we don't need labs, xrays etc.

 

[hmw]

Sputum cultures are notoriously unreliable~ a throat swab may be normal when a good productive sputum sample may show up something completely different.

There is also always that time between negative culture and first positive culture... when bugs can be spread before anyone knows they are there. In other words, if someone goes to clinic with a hx of clean cultures and no one takes precautions- and then their sputum ends up growing out PA or another nasty bug for the first time- ANY staff that has interacted with that child without taking precautions and then goes on to interact with another child can spread whatever bugs they may have.

We aren't there all day either- we sign in and are taken in for pft's, height and weight nearly immediately; then they take you right into your exam room for the rest of the visit. The whole appt averages about 2hrs if we don't need labs, xrays etc.

 

[hmw]

Sputum cultures are notoriously unreliable~ a throat swab may be normal when a good productive sputum sample may show up something completely different.
<br />
<br />There is also always that time between negative culture and first positive culture... when bugs can be spread before anyone knows they are there. In other words, if someone goes to clinic with a hx of clean cultures and no one takes precautions- and then their sputum ends up growing out PA or another nasty bug for the first time- ANY staff that has interacted with that child without taking precautions and then goes on to interact with another child can spread whatever bugs they may have.
<br />
<br />We aren't there all day either- we sign in and are taken in for pft's, height and weight nearly immediately; then they take you right into your exam room for the rest of the visit. The whole appt averages about 2hrs if we don't need labs, xrays etc.

 

[Keepercjr]

Wow! I was out of town when this thread started so I didn't see it until today. I go to the adult clinic at UCSF (san francisco). They have CF clinic twice a month though the doctors seem to see ppl with other problems at the same time. We wait in a communal waiting area but are pretty soon called into a room. Oh before our own room we are taken into the little room that they do the temp, pulse ox and blood pressure. The only person gowned and masked is the person administering the PFTs. And that is a relatively new change. The doctors and other specialists go room to room to see the patients. There is a sink in each room as well as antibacterial stuff everywhere.

I have never felt unsafe and do take advantage of the antibacterial gel. Maybe it is a product of me growing up in more lax times? Like when CF patients shared a room in the hospital. And I attended CF camp till 2004 (I am currently multi resistant so can't go anymore).