CF doc came in around 2pm (smart man coming in after noon). I always feel better when they come in. I made sure that they have final say on any and all things that are changed and/or added for my treatment while in here because I see so many different doctors while inpatient. I am happy to report that they do indeed have final say. He told me not to worry about that.
No on to my real update. I had another bad night. My nose cannula came off multiple times while I was sleeping which would make my sats (oxygen saturation) drop down sometimes as low as 86. The nurse had to come in and check in me a few times because they have a monitor at the nurses station too so they can see when I drop. They would tell me to put my cannula back on and what do ya know my sats would come back up. So between all the O2 sat fun and all the coughing I little sleep once again. I did get a decent, as in about an hour and a half, this afternoon in one stretch.
The ID (Infectious Disease) came into see me earlier. His job is to look at antibiotic options and to compare the options to what I am culturing compared to what the lab says should work. He said there are 2 new antibiotics (I don’t know the names) that we may be able to try. We first have to try them in the lab to see what the lab says on sensitivity. He said the lab has the ability to try one of them right now but the other is new enough that it is not really on the list of antibiotics that the lab carries so it may take some hoops to be jumped through and bumps in the road to get approval but they will try all they can. He did say that what I am on should, in theory, be working. It may just be that it is going to take me longer to respond. Trying the new drugs in the lab won’t happen until Monday or Tuesday.
Next up was my CF doc. First off he is going to call the ID doc to go over his note he left in my chart and make sure he has all the info correct. He wants to do PFTs/lung functions (at the bed side) on Monday just to see where I’m at after this weeks fun activities. I’m all for that because I like knowing what they are showing in comparison to how I feel. I’m not thinking they will be too good but they have surprised me before. He and I agree that I have been getting sick progressively over the last 6 or so months and bouncing back to where I was originally. This time being the worst obviously. He said this is a bad CF exacerbation on top of all of a major asthma component. He said it may be a toss up for who is/was the causing culprit. The bronch sucked out a lot of the bad junk, and by a lot I mean a lot a lot. I have been told multiple times that “there was a lot in there” with emphasis on “a lot.” The bronch also stirred stuff up which has caused my airways not to be happy therefore they squeeze down which makes me wheeze and cough trying to move air. It makes me feel like I can’t get enough air in to inflate my lungs the right way. That’s when the dry coughing happens. It doesn’t sound juicy like something is in there and can be coughed out but tight, wheezy and dry. Hence the reason they have started steroids in hopes that it will open them up. When he told me the timing of things for next week I said, “well I’m not going anywhere so I’ll be here. I told you I was not going anywhere until we had answers and I was feeling better.” He said, “yeah a little different tune this time around.” Of course, I need to get better and now that we have ruled out fungal and viral now we can focus on the bacterial and narrow in on it. Let’s get er done.
The sharp stabbing pain has shifted from my left middle (side and front) before the bronch to my right middle (side and front) still stabbing and very sharp and in tears more times than I wanted after the bronch to now an all over (front and back) lung/chest pain from all of the coughing. I’m ready for all of the pain to go away. In due time.
Now onto my mental health. I am hanging in there. There have been plenty of times I have ended up in tears in the last 10 days. I’m just very worn out physically and mentally. Having just lost my mom 19 days ago is not easy. The CF team talked about me in the weekly meeting so the whole team knows I lost my mom and they have been asking if need anything to let them know and have said how sorry they are. So they are very aware. I keep wanting to text/call her to let her know how I’m doing and give her updates. She is the first person I always called after my husband so in my mind I still need to call her. Now she’s the first to know and I don’t have to call her. I think that is all for now. My dad left this afternoon to head back home. It was nice having him here for a few days. Love you dad! I’ll update when I have something worth updating about.
Until next time…