This clinic visit was not really a full clinic visit. It was switched so that we could do it on the same day as his clinical trial that started today. While I cannot say too much, due to trial confidentiality, I will say that after taking the medication, his lung unction plummeted. The RT and myself were very scared that Philip would actually be kicked out of the trial. He started the trial not feeling his best, but his lung function has never been this low before. I think it did come up a little after an albuterol treatment, however they don't tell me any actual results.
March 30, 2016
Today started out to be a rough visit, but actually ended very well. Philip has gained over two pounds and grown over an inch. They were pleased with his growth. Initially, pfts did not turn out well. He was still WAY below his baseline and I feared that this was a permanent lung function loss. After Dr Schmidt saw the results, he ordered an albuterol treatment ad repeat PFT. These were actually MUCH better and better than he has blown since last July. Dr Schmidt decided to switch him to a Dulera inhaler in the place of his albuterol before treatments. Philip does not have asthma but has some irritated airways. Dr S. thinks that this is the safest way to get a steroid into his lungs (rather than an oral route). Dulera is a bronchodilator and steroid in one. Philip learned how to do the inhaler and we will focus on getting his therapy done the correct way (all nebs except Pulmozyme done before vest, and vest done with Aerobika device) and getting his salt room in each day. We will go back in a month but we are very hopeful that this is he answer. Dr Schmidt wonders if this irritation/inflammation isn't the cause of the gradually declining pfts since September.
April 20, 2016
This was Philip's quarterly CF appt. His weight is at 47.8# and his height is 46". His PFTs were up a bit. We will continue the Dulera, as it seems to be helping.
June 3, 2016
Today we went to the feeding clinics at both VCU and the Brook Rd campus. They decided that he does need feeding therapy to prevent further decline. They had us go buy a lunch and they observed him attempt to eat. Unfortunately, the weight list is very long, so no telling when we will actually get in.
July 20, 2016
This was Philip's annual visit. He has been having problems with malabsorption, so we have been slowly increasing his enzymes. He is currently at 30,000 units. We have also increased his zantac to 4ml. HIs weight today is 50.6# and his height is 47". He is continuing everything else as normal.
October 5, 2016
Philip has been doing well. This is his quarterly CF visit. We are now up to 40,000 units of enzymes with a plan of upping to 50,000. His weight is 51.5# and his height is 47". He is doing very well on the Orkambi and the Plexus that we added seems to be helping his stomach greatly. He is not having abdominal pain that has plagued him since birth. We are very happy!
December 2, 2016
Today was a follow up at the feeding clinic. They were very happy as he has gained over 6# since they last saw him. He gained 221% of the expected weight. They told us to slow down or he is at risk for becoming obese. This is actually funny, because CF clinic would never tell us to slow down. We are still on the wait list for feeding therapy, which in spite of his weight gain, is actually still necessary.
December 8, 2016
Today was a follow up for ENT. We have not been seen in a very long time! It was an excellent appointment. She told us to probably go ahead and start the sinus rinses back up since it is sinus season and that we do not need to come back for another year!
December 28, 2016
Today was his quarterly visit and it was fantastic! His pfts were the highest they have been in a very long time. He did have green mucus start the night before clinic, so the fact that he blew this high was great news! His weight is 53.9 and his height is 47"! The doctor would like to try and see if he can kick this without antibiotics (since he is on Orkambi). He appears fine and has no coughing. *Update 1/10/17- Philip is almost completely over whatever he had and did NOT need antibiotics. This is HUGE! His brother and sister have both been on antibiotics for sinus and respiratory infections.