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Thank you cam and Hail2pitt. You both have made me feel much better about this whole situation. It's tough, we have been going to CHP for 21 years, he sees 6 specialists, so it's kinda our home away from home. All his other docs are going to see him until he's 26 and after speaking with his...

H guys. I was wondering if any of you have had a Pleuredesis procedure. My son recently had one, and unfortunately struggles with communication. He keeps saying when he breathes it feels like when you rub your hand over a balloon. He says he can feel his lung. I've tried asking him...

Thank you Beautifulsoul for responding. I spoke with one of the nurses who has been there forever and was given this info. I was also told clinic is at Faulk and admissions are at shadyside. I feel so much better knowing I can go back with him without it being an issue. I was really worried...

Shay, maybe I'm confused but is your daughter currently a patient at children's hospital Pittsburgh or Philli? I thought you meant philly when you said CHOP.

It so funny that someone asked a similar question in a separate thread. Just curious if anyone out here sees their cf doc at the falk clinic in Pittsburgh, PA. My son is 21, turning 22 soon and his clinic is going to begin the transition to adult care. Hoping there are others out there to...

Thank you so much. Today is a much better day.

Thank you so much. I'm so glad you have done well with yours. They performed the mechanical Pleuredesis and removed a portion of the top of his lung and a smaller portion in another area. He is on a pain back at the moment and still sleeping. They said he will have a good bit of pain because...

Hi guys. My son is n the hospital with his second spontaneous pneumothorax n the left side. He woke up with chest pain and tightness. After a chest x Ray at a satellite place he was taken by ambulance to his hospital. It is over 50 percent collapsed. He will be having surgery in the am that...

Thank you so much for replying. The doc called this morning and said he's gonna put him on tobi for 28 days to see if that rids it. He will make a further decision based on the results of the next culture if he will need to stay on it or not. Thanks again.

Hi guys. Been awhile since I posted but was Just wondering if there is any need for concern when child cultures pseudomonas fluorescens? It's the first time and I called the clinic but sometimes they are slow to get back to you. Thank you so much Jshet22

Amazing news! Wishing you all the best.

Just wanted to add a quick update. After 4 days inpatient with no improvement on pft's , they let us come home to finish up his antibiotics. I feel completely comfortable giving his Meds and flushing his port now. They were planning on a bronch but after his pft's today, that is no longer...

mom2two, thanks for the YouTube idea. We do have an amazing visiting nurse that I'm sure will be quite helpful

Thank you for the encouragement Aboveallislove. I appreciate it. I'm sure i'll get the hang of it. I'm just glad he only has to stay 48 hours. He gets stressed when out of his environment and schedule, but I have had time to prepare him. The port has been be of the best decisions we have...

Thank you LL, I appreciate the info. I'm sure I'll learn everything i need to know. I know keeping things sterile is number one priority. I'm just nervous, lol. Thanks again.

Just wanted to share an update. We saw my sons GI and asked about the mucus in his urine. He said that typically means he has a uti. But since he tested negative for bacteria and is not having symptoms of a uti he doesn't know the cause. He said if symptoms arise to not hesitate to give him...

Hi guys. Well after having pft drops since December and finishing a two month round of bactruim, my son is going in on Monday to start IV antibiotics. He has a port and the plan is for him to stay inpatient for 2 days to be sure he's not having any side effects and go home and continue them...

Thank you so much everyone. I spoke to his endocrinologist, and he feels that If an x Ray is done, and there is no sign of disease in his jaw, then he has a low chance of developing it after the tooth is removed. But it is a possibility. I am going to contact his old dentist tomorrow and see...

Anyone getting IV Pamidronate for osteoporosis or low bone density? If so, have you needed a tooth extraction or do you know how risky it is to have one? My son is having severe pain from a wisdom tooth and the new dental practice we are at do not want to touch it because of him being on the...

Thank you everyone for the great advice. Between the cf doc and GI doc we have decided when he is going to be out for awhile and it's hot that we will run pedialyte through his g tube to give him as much hydration as possible. He's just so tiny weighing only 80 lbs and sweats so much, they...