We have a culprit! Bill saw the Infectious Disease dr. yesterday, well he saw the nurse practitioner, and we now know what is causing the pneumonia flare-ups...it's the pseudomonas aeruginosa virus. It's one of those that takes a long time to grow, and it was found in his right middle lobe of the lung. We probably still wouldn't know what it was if Dr. Munday hadn't agreed with me that he needed the bronchoscopy.
When I told Beverly I would research this virus to learn more about it, she told me not to get to involved with it because it is a nasty virus with 191 variations and the literature would be scary. She did print out the lab findings for me and it lists the antibiotics that are most effective. It showed 2 strains, 3 and 4, and I don't know anything other than that about them at this time. Strain 4 is resistant to some of the antibiotics, but strain 3 wasn't.
He got his labs done before we had to go to Memphis and Emily emailed them to me. His white count is back down to where it was when he was discharged, and even though it is still high, Beverly was not concerned about it. I guess for someone with Bill's immune system, this is an acceptable number. The maximum suggested count is 10,000 and Bill was at 11,600 yesterday, compared to 11,300 at discharge. He was at 14,500 on Monday (it had gone up again from when he had his labs drawn last Friday) so Connie added Rocephin shots again.
We did have a big snafu with those and I took the brunt of it. When Em called and told me that she was ordering the shots, her nurse Amy was standing right there with her and I told Em to make sure when they ordered the shots to include the Lidocaine and syringes and to have Amy contact the home health people again to do them. I waited until late Monday afternoon and didn't hear anything from home health, so about 4:30 I hauled Bill and the shots up to the office to get one. Connie saw us there and wanted to know why we were there and I said to get the shot and I heard her tell Amy to make sure they were set up with home health. Tuesday we still hadn't heard anything so took him back up. Connie told me not to bring him back, she would come to the house herself to give the shot if home health didn't come. I was standing next to Amy when she called them and this was the first they had heard of it, so she hadn't called before! We also found out that our nurse, Ricky, was at the emergency room with gall stones and he had emergency surgery Wednesday. But, I digress. I was chewed out again before we left for bringing Bill up for the shot and the more I thought about it I thought "what does she want, she wants him to have the shot but if they don't show up and I don't get them called in time no-one will be there to come and give it, or do I take him out to get the shot". Anyway, later that evening I got a call from the director of home health and he said they had just gotten the orders for the shots and he would be here the next morning himself. That's when I knew for sure that Amy hadn't called them before that afternoon. It wouldn't have done any good for me to have called because they needed the order from the dr.
Johnny came out Wednesday and Thursday and is a really nice guy. He even worked on Bill's horrendous toenails some. I had cut them as much as I could and he sat on the floor with a nail file and worked on them some. He said that when they were still the health department, they would do foot care for patients, but since this group took over they don't allow it. He said he could have sat there all day working on his feet. I've got to get an appointment with a podiatrist to get them cared for before long.
Anyway, back to Memphis. Beverly told us that if he starts feeling bad again to call them and they'll get him in and give him an infusion of antibiotics, or send him home with IV antibiotics. She listened to him and said that he is still a little crackly, but not like he was in the hospital, so he is on the mend from this round. She also said that this bacteria is one that likes to attack people with lung problems, compromised immune systems, and in the hospital. She was surprised that the combination of Levaquain, Doxycycline and Rocephin worked so well in combination, but as long as they work, that's what we'll do. I have to look up the names of the antibiotics on the paper to see what the name brand is for them so I'll know just what they are.
Stephanie called earlier in the week to check on him since they had the notes from the ER doctor who had called to consult, and I think Dr. Shirwanny had also consulted. She just said if Bill wanted to get set up with their lung doctors to let her know. So far, he doesn't want to. I think it's just because he's tired of Drs. right now and the trip does wear him out.
I have noticed that when he's at home, he isn't having any trouble walking from room to room, and when his O2 sats are checked he's in the high 90s. But, to go to the Dr. he can't walk any distance, even slowly, and he starts laboring to breathe. I don't know if it's just because he's out of his normal, or if he's just putting on like his mother was inclined to do. We used the wheelchair yesterday since I didn't know the logistics of the office and he did fine. So, something to watch for.
I managed to get my ID redone Monday. The girl couldn't have been nicer and I didn't need Bill's ID with me since he had signed the paperwork electronically. So that's out of the way for another 4 years.
I had my esophagram Thursday and I still don't have any results yet. It went well and I was home in 30 minutes. I had to drink some fizzy stuff and they told me that it would make me burp, but not to burp. Then there was a really thick "milkshake" that I had to hold in my mouth until the dr. told me to swallow, and the same with a thinner milk like drink. Finally I had to take a pill and it felt like it got stuck. When I showed the dr. where it was hurting he said the pill was actually farther down than that. All the time I was swallowing, he was taking x-rays up and down my esophagus. The table would go from laying flat to standing me up WHILE I WAS ON IT! It was kind of like being on a carnival ride! Hopefully I'll hear something from Dr. Raj early in the week.
Bill sees Dr. Burbeck next Wednesday instead of waiting until his appointment in August, and then we are pretty much done with Drs. as far as I know until my echo in August. That will be nice.
That's been our week. We'll still see home health for physical therapy and a nurse once a week just to eyeball Bill to make sure he is still progressing. Until next week...