Hello again, dear friends. I've been away too long, I know.
We came home on the 4th of July, and I've had to take a stand to keep him here.
Matt had some delireium in the hospital, and he even got pretty harsh with people. It was sporadic, and the docs thought it would clear up when we got home.
Nope. It didn't. It just got worse, and when I contacted his Va PCP to ask for an order for home health to draw blood, urine and sputum, he response was to tell me to take him to the ER. NOPE. Until those tests were run there was nothing they would do that we weren't doing at home. Fortunately, our local PCP agreed to do all the testing--we got all the samples in Friday.
Then Friday night I prepared his 10pm meds...methadone, gabepentin, and Tylenol, but forgot to give it to him. He slept all night and woke up lucid. So, remembering that Gabipenten made him mean a couple of years ago, I stopped it and cut his Methadone to 1/4 tablet instead of 1/2. Another wonderfully lucid day with no complaints of pain.
Note that we did not tell him we've cut or reduced anything, because we've learned that he has a lot of anticipatory pain.
Still holding the Gabipentin, but I did move the Methadone back to the prescribed 1/2 tablet this morning to see how that works.
His 02 has been falling and we've got him on anywhere from one to two liters of oxygen. The RT says we've about maxed the vent and that this may be disease progression, but I'm also thinking it may be the Methadone...so I'm tracking what happens today.
He has completed the IV antibiotics (a total of three bacteria grew from the cultures and we went through 3 or 4 different antibiotics because of that and elevated something or another) and is now doing Inahaled Tobyrimyicin (sp?) daily indefinitely. Infectious Diseases is now following and controlling that.
There is another piece of equipment on order. IPV therapy worked very well in the hospital. It sends bursts of air into his lungs at different frequencies over 20 minutes (I have to turn it manually) and it forces mucus out of the lungs and opens up the sacs even better than the cough assist. Here's the drill...Nebulized DuoNeb with Saline, IPV for 20 minutes (with Saline to keep things moist), cough assist, suction, then nebulized antibiotic. It kept him clear all day. I'm going to follow up tomorrow to see when it should arrive.
Our youngest son came back this weekend with his wife and our two year old grandson...it was wonderful to see them. I had a nurse here and was able to spend the day int he lake with them.
Also under the heading of "I'm not playing your games any more"--the HHA sent a new aide out yesterday. She called from the street (rather than walking down the long driveway to the house) to make sure she was in the right place. Then she asked if we had dogs. She said she doesn't like dogs. I offered that they are friendly and we can try introducing them, and her reply was that she's not afraid of then, she just doesn't like them. She wanted them shut up while "she did her work". Four hours. Not. I told her it was clearly not going to work out and thanked her for her time. I literally heard her jaw drop over the phone.
I've told the agency not to send anyone else out who will not be a regular because it's harder to train them than to do it myself. She was supposed to be "checking to see if she wanted to come back". I was a bit suspicious of that to begin with.
If the driveway and the dog were too much for her, imagine what she'd have said when she got a look at Matt.
It is wonderful to be home!!!!
Oh, Sue, you are welcome any time!!!!
