Philip was discharged today. He was able to get his PFTs up to an all time high of 131% !!! He never plateaued, but there was really no reason to keep him here over Christmas.
Dec 10, 2018
Philip was admitted again. His cough won't go away and his lung function continues to decline. We were going to admit him through the ER last night, but the snowy conditions were too dangerous. Philip's bronch was not bad but did show more mucus than last time. It did not grow pseudo but it did show aspergillis and Achromobacter insolitus. They placed a PICC line and started tobramycin, ceftazidime, and bactrim.
Sept 13, 2018
Philip has been admitted to VCU (1st cf admission!). On 9/14/18, he had a PICC line placed and a bronchoscopy performed. They allowed me to come back with him and hold his hand and comfort him until he was out. Dr Schmidt came out a couple of times to talk to me. He did not see a whole lot of mucus, but there was some near the base. Culture later revealed pseudomonas. We have been praying this would not show until much later, but I am very grateful that we did the bronch and found it. He is currently taking oral Minocycline in case steno shows up, and IV Tobramycin and Zosyn for the stap and PA. He had a mild reaction to the zosyn at first. He felt weird, itchy, and BP dropped a little . He has been fine since. His PFTs have gone from 114 on entry (day 1), to 84 after bronch (day 5), to 93 (day 8), to 111 (day 12) to 117 (day 15). We have had several major issues with staff all across the board following cf protocol. My complaints reached up to the VP of Operations and she personally came to our room, along with the Nurse Manager , and addressed things. She voiced that she would like me to be of assistance on some boards to change these problems. Philip should be discharged on day 18.
Sept 6, 2018
Today Philip has his first CT scan. Significant findings- Central airways clear of secretions. Mild cylindrical bronchiectasis in right lower lobe and right upper lobe with mild bronchial wall thickening. Mild cylindrical bronchiectasis in left lower lobe with bronchial wall thickening. Reticulonodular opacity in lower aspect of right upper lobe. Suggeates small airway disease. Dr. Schmidt believes this is all reveraible and we need to hospitalize and perform a bronchoscopy.
Aug 16, 2018
Philip had his ENT appt today. He is still coughing and has been on antibiotic combos for a week and a half. He had a sore throat yesterday. Sinuses look great. She suggested the sinus rinses be done twice daily during fall/winter.Follow up in 6 months.
July 18, 2018
Philip is still coughing and sounds winded often. Increasing zantac has not made a difference. Weight was 69.6 lbs. PFTs were down 6% from last month. Dr still thinks thisnis GERD, so we will switch to a PPI.We are alao getting a larger vest to alleviate some of his stomach pain when doing therapy. Bone scan was low, ao we plan ro return in 2 years to repeat.
July 16, 2018
Philip had his first bone scan today. It was very easy to do but we did learn it was low.
June 19, 2018
Philip went to WWE on June 2, and has had a strained voice after. We thought it was from screaming, but around May 31, he started with a dry cough. He said that it hurt in his right upper side on inhalation. He sounds out of breath sometimes , but his spirometer at home is about the same. Claritin is not relieving his cough. He had an episode of cheat pain, but albuterol helped. His weight today waa 71.1 lbs.PFTs are unchanged. They are doubling his antacid to see if that helps with the cough.
April 25, 2018
Philip has gained a lot! He weighs in today at 67.8 lbs! This puts his bmi at 94.89%tile! His lung function has increased again by 3% and is now at a new, higher baseline! We are cutting way back on his megace (gradually) and increasing his enzymes to 6 with meals.
March 14, 2018
Dr. Schmidt saw Philip today. His lungs have returned to baseline. His bmi continues to fall, so we are going to add Megace and see if we can get aome weight on him. He is currently 56.1 lbs which puts him at 48.35%ile bmi.
Feb 26, 2018
Philip was able to see Dr Schmidt this morning. After Dr Voynow wanting to admit him, and then changing her mind, he seems to be doing a little better. His cough is still present, but his pfts are up to 113%. Still not baseline, but better. His oxygen was 98%. We will come back in 2 weeks for follow up pfts
Feb 20, 2018
On Feb 4, Philip was diagnosed with Flu A. He recovered very well from it and after his initial 105 fever, he had no fevers. Shortly after, he developed a cough that was nonstop. We also found out that he cultured steno for the first time. When he was diagnosed with the flu, the urgent care also started him on Augmentin. After finishing that, Dr Schmidt put him on Bactrim to better treat his bacteria. His sp02 has been dropping to the 80s and his pfts dropped 36% at home. He was seen at VCU today. His oxygen was still only up to 96% , but his pfts were up to 100%. So, still clinically significant, but Dr Schechter feels like he is on the upswing. We extended his Bactrim to 3x a day.
Feb 15,2018
Philip was seen by Dr Dodson at the ENT clinic today. Everything looked great , except he still has a residual cough. She would like to see him in 6 months for a follow up.
Jan 31, 2018
Today was a good visit! Philip gained a little bit of weight and his pfts were the highest they have been in a while! We are in the process of fighting insurance to get him the eRapid nebulizer to make his treatments quicker.