I want to start this off saying I LOVE our CF center and the staff there. They are a great bunch of folks and have my child's best interest at heart. I know this.
I'm struggling though with some things.
<b>Background: </b>
Last Monday and Tuesday Abby ran a high temp (101.4 up to 103.2) off and on. Motrin and Tylenol would take care of it for 6-8 hours and then it would come back. She had a cough and a really snotty, gross nose.
I called Abby's Pedi and made an appointment on Tuesday afternoon/evening. In the process I also called the CF center to see what we needed to do from their perspective. They said to call and leave a message with what the Pedi says, the treatment, and follow-up instructions.
Went to the Pedi. Double ear infection, on Augmentin for 10 days, follow up Friday of this week or Monday of the next with the Pedi after she finishes the antibiotic. I left a message Tues night with the center.
Thursday I got a call back from the CF center nurse, that I love and adore, telling us to call them after she has been on the antibiotic for a week and let them know if her cough and/or nose drainage was any better. If it isn't, they want to see her immediately.
~~~
<b>Here's my delimma:</b>
We live 2.5 hours (168 miles one way) away from our clinic. This Tuesday night will be 1 week. We'll call on Wednesday morning.
As of tonight when I tucked her in...Her cough is worse, but sounds productive (and I know she's been coughing up junk...TMI, sorry) and her nose is still horribly gross.
We want to do what is right by our child, but with gas prices, etc., the financial COST of driving up there to get a "add in two breathing treatments and call me in the morning" sort of assessment would really aggrivate me. I'm sure some of you are thinking I'm a bad mother. I just know the wear and tear on both Abby and myself or my hubby trying to drive 5 hours for a 20-30 minute appointment. I do understand why they want to see her. They really can't rely on any other doctor to listen to her to see what's going on...UGH!!!
~~~
<b>My question to you all who live as far away or farther from your clinic...</b>
What do you do for yourself, your spouse, your child/ren in this sort of situation? Do you have a pulmonologist nearby who is familiar enough with CF and your case to communicate with the CF clinic? Do you suck-it-up and make the drive? What do you do?
~~~
<b>Finally, coordinating care between your clinic and your child/ren's, your, or your spouse's PCP?</b>
How does that happen? Abby's PCP is frustrated because he only hears what we tell him and would like something more official after each visit, not b/c he wants to treat her CF, he just doesn't want to do anything that might interefere with her CF treatment. I HATE being in the middle of things.
~~~
I would greatly appreciate your thoughts and ideas about all of this mess. I hope it makes sense. I've been stressing out about this instead of sleeping tonight. Maybe putting it out there for others to chew on a bit will allow me to get some sleep!
Sorry such a novel.
I'm struggling though with some things.
<b>Background: </b>
Last Monday and Tuesday Abby ran a high temp (101.4 up to 103.2) off and on. Motrin and Tylenol would take care of it for 6-8 hours and then it would come back. She had a cough and a really snotty, gross nose.
I called Abby's Pedi and made an appointment on Tuesday afternoon/evening. In the process I also called the CF center to see what we needed to do from their perspective. They said to call and leave a message with what the Pedi says, the treatment, and follow-up instructions.
Went to the Pedi. Double ear infection, on Augmentin for 10 days, follow up Friday of this week or Monday of the next with the Pedi after she finishes the antibiotic. I left a message Tues night with the center.
Thursday I got a call back from the CF center nurse, that I love and adore, telling us to call them after she has been on the antibiotic for a week and let them know if her cough and/or nose drainage was any better. If it isn't, they want to see her immediately.
~~~
<b>Here's my delimma:</b>
We live 2.5 hours (168 miles one way) away from our clinic. This Tuesday night will be 1 week. We'll call on Wednesday morning.
As of tonight when I tucked her in...Her cough is worse, but sounds productive (and I know she's been coughing up junk...TMI, sorry) and her nose is still horribly gross.
We want to do what is right by our child, but with gas prices, etc., the financial COST of driving up there to get a "add in two breathing treatments and call me in the morning" sort of assessment would really aggrivate me. I'm sure some of you are thinking I'm a bad mother. I just know the wear and tear on both Abby and myself or my hubby trying to drive 5 hours for a 20-30 minute appointment. I do understand why they want to see her. They really can't rely on any other doctor to listen to her to see what's going on...UGH!!!
~~~
<b>My question to you all who live as far away or farther from your clinic...</b>
What do you do for yourself, your spouse, your child/ren in this sort of situation? Do you have a pulmonologist nearby who is familiar enough with CF and your case to communicate with the CF clinic? Do you suck-it-up and make the drive? What do you do?
~~~
<b>Finally, coordinating care between your clinic and your child/ren's, your, or your spouse's PCP?</b>
How does that happen? Abby's PCP is frustrated because he only hears what we tell him and would like something more official after each visit, not b/c he wants to treat her CF, he just doesn't want to do anything that might interefere with her CF treatment. I HATE being in the middle of things.
~~~
I would greatly appreciate your thoughts and ideas about all of this mess. I hope it makes sense. I've been stressing out about this instead of sleeping tonight. Maybe putting it out there for others to chew on a bit will allow me to get some sleep!
Sorry such a novel.