Not a clinic visit, but we decided to switch Philip over to real saline washes. He did amazing and got up a lot of mucus. I am so glad we started doing this. For now, we will still follow up with a squirt of pulmozyme and flonase.
Nov 7, 2017
Today was a great visit! Philip is laughing and joking with Dr Schmidt! His PFTs are the highest they have been in THREE years! They are higher than when he started the Orkambi trials which is just amazing. We return in three months.
Oct. 11, 2017
Today was our follow up visit. Philip is doing MUCH better. He is brighter, happier, and doesn't seem to be foggy! His pfts have come up and his sp02 was back to 100%. We will return in a month to recheck. We are also ordering the GoSpiro spirometer and Philip is the first consumer in the world to own one!
Sept 29, 2017
Philip's lung function was steadily dropping at home so we went in for formal pfts. They were better than at home but still about 20% below his best. We talked about trying to get him a new professional spiro and will call the company to order. After talking with Dr Schmidt, we have decided to take Philip off of the Orkambi fir the next week and a half to see what happens. He has a slight concavity in his pft diagram and we feel that his lungs never fully recovered from the immediate drop we saw when he started the trial. I also feel pretty strongly that the meds have caused him to have serious brain fog and spaciness. We go back on the 11th to see how he's doing.
Sept 20, 2017
I took Philip in today because he has been a little congested. His mucus has turned green and he's pale. PFTs were down again, so we are starting a two week round of Bactrim and we will return in a month for a recheck. His lungs are clear so we are unsure of what caused this.
July 5, 2017
Today was Philip's yearly visit. He did blood draws like a champ. His weight was up 2 pounds, to 55 pounds. His height was up as well. He did pfts and they were down 10%. We realized he hasn't been doing his Dulera correctly, so we tried albuterol. His pfts came up 7%, but I learned they were down at his last clinical trial visit. Dr Schmidt talked about antibiotics , but we decided to try and correct his therapy issues first. We set up a plan with nutrition to carry to feeding clinic. He needs 2000 calories each day. RT gave him a Rody Max to ride on , which was pretty cool! They forgot to do xrays , so we will do that next time. He wants him to come back for a recheck in a month.