I failed to blog again yesterday 🙁
Today’s blog is a bit early and will have to cover yesterday and today. Yesterday morning one of the doctors from the hospital called me up and wanted to fill me in on what is going on and answer my questions. I was surprised that he called me, but glad that he did. If you recall from my last blog post, I had left a list of questions with the nurse. The doctor got that list and that prompted his call. We talked for several minutes about the various questions I had left for him. By the end of the conversation I was left with the following impression. The doctor is very much interested in seeing my father progress. My fears of the hospital coming to some reasonable conclusion and calling it a day were alleviated a bit during my conversation with the doctor. The doctor explained that there are some things they know and some things they do not know. The things they know are that my dad’s condition is not caused by a contagious route like a virus, bacteria or fungal infection. All of those test, including the fungal infection test done up at UC Davis, came back negative. They know that when he is off oxygen that his body’s oxygen supply is not being replenished by normal air. They know that they have a tough time getting him to stabilize with low flow oxygen (low enough that home oxygen machines can provide adequate oxygen). They do not know what the actual diagnosis is because they would have to perform a lung biopsy for a definitive diagnosis and he would not survive such a procedure in his current condition. So they have to go by their best ‘guess’ given everything dad has presented.
Usual Interstitial Pneumonia/Idiopathic Pulmonary Fibrosis looks like the diagnosis they will end up settling on. The terms usual and idiopathic basically mean that the cause is unknown and is not infectious. The most likely causes would be the chemotherapy drugs and/or radiation treatment. The course of action at this point is to provide a low dose of antibiotic to prevent infection, steroids to help reduce swelling (pneumonia) and administer oxygen to assist the lungs in performing the duties that the scarred (fibrosis) portions are no longer handling. In order to get him in a position to come home he needs to be able to sustain oxygen saturation of 90% during activity (physical exertion) while using less than 10 lpm oxygen. They will try to accomplish this goal by building his strength back up using physical and respiratory therapy. It will be a slow process, but based on what I saw yesterday when I visited him, I think he can do it.
When I went to see him yesterday, he was off the high flow oxygen and was on a normal nasal canula at 6 lpm of oxygen. This was while resting. His saturation held pretty steady between 90 and 95%. This was a good sign as he had been on the high flow and even pap machines the past week. The physical therapist even got him to stand up yesterday and although he was vertical for only a second, that is still quite the progress. He was bummed that it wasn’t longer, but I told him that one second will turn into ten seconds and then into a minute and so on. That he needs to be patient with this process and that it will not happen overnight. He also had a little setback today when they had to put him back on high flow oxygen. Again I told him that yesterday’s progress was good news and that he is going to have backward steps along the way. That his body was tired from working hard yesterday and just needed a bit of a rest. That each day he will get stronger if he remains positive and follows the instructions given to him.
*there was about a 3 hour pause in writing this blog to go visit with dad*
Dad went back on normal flow oxygen at 6 lpm late this afternoon. Turns out that I might have been right about that whole needing to give his body a bit of a break. He was on the high flow for about 8 hours before his numbers looked good enough to switch back down to normal flow. As we were getting ready to leave, his saturation when down into the high eighties, but I have no doubt it would bounce back above ninety once we left and he calmed down. He talked with the nurse about wearing a pap tonight while he is sleeping to see if the little setback he saw today could be attributed to his breathing patterns while sleeping. She thought that would be a good idea.
Mom gets to ingest barium contrast tonight for her abdominal CT tomorrow. As I have mentioned before, this CT is being performed to determine if the previous chemotherapy treatments have had any positive effect on her cancer. If the tumor has grown in a significant way that would suggest the treatment did little to prevent growth then it is very possible mom will need to make the choice of continuing treatment or not. If the growth as paused or better yet if there is any shrinkage in the tumors then chemotherapy will be done as planned. As long as it is helping her, I will deal with zombie mom. There should be plenty time after the CT scan tomorrow for the doctors to get the results prior to chemo on Tuesday morning.
*another pause, this time to make dinner… spaghetti and meatballs… yum*
My sister may be here tomorrow. She had knee surgery last Thursday and is going to see the doctor in the morning. If the doctor clears her to drive then she will come down here for about a week. I really hope she is able to make it. I don’t know how things will go after mom has her chemo especially since dad will still be in the hospital, so the extra help will be nice. Even though she will be on crutches, she can at least spent more time with dad than we are able to right now and help cheer him up and get him better that much quicker. She wont be able to help out around the house much, but that is okay. Her morale support will help a great deal.
Well I think that sums up the day. We shall see what fun stuff tomorrow brings!