Sunday was a quiet day. Bro-in-law Skip came over for (low sodium) sloppy joe's. When Daddy's low battery warning started beeping, Skip was visibly intrigued. Daddy lets it go for a few minutes before getting a new battery until the alert gets louder. Jaron cried uncle because it was driving him crazy and went to get Daddy a new battery.
Daddy was really sore from all the walking at the baseball game on Saturday. He really enjoyed it and wore his "Roger 2.1" hat.
Monday we had a home health aide come over. She helped Daddy wash his feet and Daddy said that she wasn't doing anything he couldn't or hasn't already done. So I guess we won't worry about using that service again. She was really nice though. The home nurse didn't come until 7pm. I called every 2 hours starting at 10am and kept being told that the nurse would call me to schedule, that someone would definitely come today and that they would bring the INR machine. Dr. Steele called at 5:00 for his INR and we had to call her back on her cell at 7:30. The home nurse was a total fruit loop. She kept going back and forth about which days were on the dr's order. She kept trying to give us instructions on his meds. She called after she left to say that she forgot to have Daddy sign for treatment, and said she would come back by to get someone to sign it the next day. We never saw her, so she must have signed it herself? It's been a different nurse every time. Monday we waited by the phone all day. I called the office & expressed concerns to the manager on Wednesday and she agreed that it should not be that way. Daddy & I priced home INR machines that night.
Home OT called on Monday while the fruit loop home nurse was here and offered one appt time for this week which didn't work. I counter-offered 3 other blocks of time and none of those worked for her. Awkward silence. Guess we'll try again next week. Not super impressed with this company!
On Tuesday we called Medicare & Social Security for 3 hours. I lost some IQ points. Daddy chuckled while I made hand motions of shooting myself, hanging myself, punching myself in the face, banging my head on the counter, backhanding the phone, etc. Dr. Steele said that there was a code for heart failure total disability that Daddy would qualify under, but the person I spoke with said it was only for kidney failure & Lou Gherig's disease. Dr. Steele said that a social worker at UMMC or the Baltimore VA would know the codes for the forms. That's funny because so far every time we see or talk to a social worker, they are talking about insurance. We started calling them insurance salesmen at UPMC and that's for real all they are! The VA wants to share the costs with Medicare and had a social worker call us. That's what prompted this 3 hour joyride.
I made people communicate with each other between the VA & UMMC and got the financial concerns resolved, and the UMMC person I spoke with said that they had reviewed Daddy's records and medical-wise they could care for him there. So that's a big relief. That appt is Friday afternoon.
We also fixed some stuff Tuesday on the dresser in the guest room. In an interesting role reversal, Daddy held the flashlight while Julie fixed stuff. At 3:30, home PT came by. This is the only in-home service that provides any value to Daddy. She really worked him hard on a mini pedal bike that sat on the floor, then had him do some toe raises, high knee marching in place, and mini-squats. So, both of us got our asses kicked at PT that day. She requested that we get some blood pressure parameters for her, because she is supposed to keep patients within some range. It's so funny trying to explain Daddy's blood pressure to people. He just lets them try and doesn't interrupt or warn them until they ask why he has no blood pressure. Anyway, the home PTist is a good sport and she's been the same person showing up each time.
Wednesday Daddy did some business calls. Then we sorted out his pills. I took all of the info sheets off of all of the packages and bags and put them in a small bag. I sorted out all of the bottles by drug and wrote the name on sticky notes and put them on the counter. I should have taken a picture. I checked the doses and calculated how many days/weeks/months he had of each. Some of them are lower so he has to take 2 to get the right dose. Some of them are bigger and will have to be cut in half. I am not a fan of this "cut 45 pills in half" scheme. The ones I'm thinking of are small to begin with, and cutting them is never perfect so the dose isn't going to be consistent. I emailed his dr through the secure web portal about 2 that were missing, 5 that he didn't need/want anymore, and ordered refills that were available online. Then I put all of the meds with their street & generic names, dose, time of day taken, etc in a spreadsheet so that it's available when we're at an appt and they ask us what dose he's on. Since no one's electronic records work with each other.
We're starting to get VAD dressing supplies in the mail from the VA. Daddy will start doing it himself standing in the bathroom using the counter for supplies, the big bathroom mirror, and two smaller mirrors. His next one is due Friday, but they may want to look at his driveline exit site and do a dressing change at his appt at UMMC.
Later on we went to see Daddy's first 3D movie. They didn't have his favorite candy there (dots), so he got Mike & Ike and Swedish Fish instead. Daddy chose to change out of his PJ's to go to the movie. Did you know that you can ask for unsalted popcorn at Cinemark movie theaters? It was yellow popcorn, not white, so he declined & went with the candy. Guardians of the Galaxy was just as good the second time for me. Daddy loved it. Afterwards, I made a joke about power-walking the mall and he wanted to walk a little bit. We stuck our heads in a Dave & Busters because it had a lot of colorful lights like a casino. We also went in to a Lego store and oohed and aahed over the big Star Wars lego sets. We walked to another entrance and I went to bring the car over while Daddy sat on a bench. He walked 2096 steps on Wednesday!
Today is Thursday. Julie is playing our favorite game (two words, both start with 'f') with the home nurse again, and we expect Home PT to come later. (Apparently the same Fruit Loop home nurse is coming today.) We made some soba noodles stir-fried with vegetables. Attempting to make a low-salt version of the yakisoba noodles that I get from Costco. They are super-delicious, but have 3000 mg of sodium in each package. Our noodles turned out pretty well, but they must use lo mein noodles in the package because the soba noodles were much smaller and had a totally different texture.
I'm going to get paperwork organized and write down questions for our big VAD appt tomorrow. Will post an update to let you know how that goes. Monday he has a podiatrist appt at the DC VA, and then I'll transfer everything to the Baltimore VA where we'll have to start over with a primary care appointment again. Dr. Steele said that she tried to bypass it for us but couldn't. She also said that the Baltimore VA uses the same electronic records system as UPMC and that a VA cardiologist can work with a VAD cardiologist at UMMC on his transplant work-up.
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