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JoAnn...how is Jason
- Thread starter anonymous
- Start date
Hi - They are still waiting for his last culture results and want to recheck his PFTs in a little while. Assuming his numbers don't change and he continues to feel fine, he is scheduled to go in in April. The culture results will help guide whether he needs a bronchoscope also. Thanks for thinking of us. I am waiting to hear back from the dr. with the answers to a bunch of questions I had. I will keep you up to date. Thanks again.
Hi - I just got our call from the hospital and J is scheduled for a bronchoscopy and a PICC line on March 30. To make things a little more interesting, he broke 2 bones in his foot on Sat. so now he is in an air cast for 3 to 6 weeks. I am just getting over pneumonia and am feeling really overwhelmed and nervous. I will hope and pray all goes ok and try to make the best out of a crappy situation. Thanks for letting me vent. Jo Ann, mom of J - 7 with cf and T - 10 w/out cf
JoAnn,
I am just a little courios as to why the doctors are waiting so long for the PICC, if your child is sick now why are they waiting??? When Kait is sick and needs antibiotics the doctors start her Picc right away, like a day or two and he never seems to take this long for her cultures to come back. Have they done an X-ray to see if there are any changes and PFT's to see if baseline results have changed any?? Just curious! Hope that you are feeling better soon !!!!
Take care
Kaitsmom<img src="i/expressions/rose.gif" border="0">
I am just a little courios as to why the doctors are waiting so long for the PICC, if your child is sick now why are they waiting??? When Kait is sick and needs antibiotics the doctors start her Picc right away, like a day or two and he never seems to take this long for her cultures to come back. Have they done an X-ray to see if there are any changes and PFT's to see if baseline results have changed any?? Just curious! Hope that you are feeling better soon !!!!
Take care
Kaitsmom<img src="i/expressions/rose.gif" border="0">
Hi - I'll give you a recap of the history. Jason doesn't feel sick. He is 7 now. He was dx at 18 mos and was very ill at the time. He had a bronch at that time before they knew it was cf and after doing the bronch very quickly ordered the sweat test. He doesn't match a typical cf profile, however after the fact we can certainly see all of the misdiagnosis. For as long as they have been able to get PFT numbers on him, his small airway numbers have not been good. He def. has an asthma component. He has cultured pseud. a few times and the TOBI has always helped. He used to get a lot of sinus infect. Since doing the on/off TOBI cycle, that hasn't happened anymore. The reason for doing the bronch is because Jason does not cough anything up. If he does, he throws up and we certainly don't get a good culture that way. We are doing some iv antibiotics to see if his small airway numbers change. If they don't then unfort. they must be his baseline numbers which would be a shame. If they do, then maybe there was a bug that was hiding in his lungs and we didn't know. The bronch is to help to make the best decision possible regarding which iv antibiotics to use. Because nothing has changed and he feels good the dr suggested summer. I requested sooner. The sooner the better chance of helping him if it works and he wont finish school only to be told he cannot swim for 2 weeks. Hopefully this explains this better. I understand why it seems odd. It is more of like a tune up then a response to being really sick. I really hope it makes a difference and we were just not able to identify it because of the inconsistent cultures. Because he doesn't feel sick and since this is his first time is why it will be harder for him to understand why he needs to do this.