Like last time, Amanda did well through the infusion but tanked afterward in the evening on Monday. She started feeling bad once we got home, which only worsened through the night. The double Bumex before and after the treatment probably didn’t help either. It was good that I was home, too; she was moving around pretty sluggishly. When she got up later in the evening, she even said there was no way she could have taken Tank out on her own.
Speaking of Tank, we got attacked by a small dog off leash inside the complex. I’ve seen this lady walk the dog before; she never has it on a leash and picks it up when she sees Tank and me. She did the same this time, but when we went to get the mail, she must have put it back down. It came barreling around the corner and made a B-line straight for Tank. I was putting my foot out and pushing it back as it bite at Tank. Our sweet boy could have ended that thing in one chomp but didn’t even pull in the leash that bad. The lady didn’t even scold the dog. I was nice this time and kept my mouth shut, but I won’t be so nice to either next time, and my gentle nudge will be a hard kick with scolding for the owner! I’m fine with off-leash dogs if they are well-behaved, but not if your dog wants to fight other dogs. It was a good thing it wasn’t our old Boxer H. He was fiercely protective and would have given that small dog a quick ticket over the rainbow bridge. I asked Sybil if she’d had any issues with dogs and told her what happened. She checked on Tank later, worried he had gotten bit, saying, “He is stuffed with love, and I do not want any of that love coming out of him!”
We had some leftover rice, so I made a veggie-filled fried brown rice for dinner. We were pretty much done with dinner when Amanda said, “Weren’t you going to cook egg rolls, too?” I completely forgot about them! That didn’t stop me from cooking some anyway. We had all the home health meds delivered late in the evening after dinner to be ready for home health to show up as soon as Amanda placed the PICC. It ended up being two different infusion centers Amanda was talking to back and forth, and it took a few calls to realize she was talking to different agencies. When she did, she put the one that wouldn’t ship anything until the end date was determined on hold. The supplies that arrived were enough for a week but only enough meds for two days. I guess they were also waiting for an end date but wanted to get the meds out to be ready for when she got the PICC.
As the evening went on, Amanda’s pain got worse. She was just feeling like crap. She looked it too, and when I told her so, she didn’t even feel good enough to quip back with a gee thanks as she usually would. We were watching a movie, and she got up to go to the bathroom and said she was going to bed afterward since she didn’t know if she could make it to her chair and then back to bed later. She felt rough last time later on, but this time, the Bumex before and after made it worse. Plus, the excess fluid wasn’t helping a bit, either.
She didn’t seem much better in the morning. She was moving even slower than her regular slow walk. We got all loaded up to head to the hospital for the PICC line. It had to be done in interventional radiology because of her unique upper chest anatomy. Otherwise, they could have just done it in the clinic. As we wheeled out of our apartment, the one across the road is named Someting or other that ends in Vanderbilt. Amanda had commented on having to see that daily, thinking about the Tennessee hospital we will go to in May. I know Amanda wants a quick fix and to be listed up there, but logistically, we just can’t swing that. If we have to, and it’s the only option, I’ll make it happen, but we can sustain here for a while. We may not have our support group like back home, but we have many people we can call on here in Houston, or it is a 5-hour drive for someone from home to get here. Nashville is a long way off, we know one person there, and I can’t work there as I can in Houston. To make Vanderbilt work, will I need to work enough to qualify for family medical leave and next year’s vacation. Sometimes, it’s been a game with the railroad to keep my job and insurance. I need both of those to play that game well. Taking a leave of absence may sound easy, but I won’t have income, plus I would have to pay well over $2k a month to keep my insurance.
Speaking of insurance, I had it out with our RX insurance on the phone while Amanda was back waiting for the PICC to be placed. I went over to the Walgreens across the sky bridge from the hospital. It’s the one the hospitalist called the pain meds into. My insurance only does 21 days at a time; I assume they do this to force you to use their mail-order 90-day script pharmacy. We had 9 days left to fill on both pain meds. I waited forever, long enough to get my Mac out and type a bit. When I was called up, they told me how the pharmacist called the insurance, and they had met their allotment on those and wouldn’t pay any more on those particular meds until May 12th. I was confused and went back and forth with them about it. I finally asked what it would cost for the remaining 9 days of each. They said $58, and I said, “Fine, I’ll do that.” But then I got to thinking. Amanda didn’t need them right away, and with the insurance, we should only pay a portion of the copay, so it would only have been a few bucks. I decided to call the insurance instead.
After getting transferred and telling the story all over again, I got someone who knew the problem. They wanted prior authorization. I lost it on the poor lady. Hollering, I said, “As if it’s not enough to deal with what we have going in waiting for a second heart transplant for my wife, I have to deal with all your insurance crap too!” I was done. Why do you need a prior authorization? It’s like the prescription isn’t enough. The doctor obviously wanted her to have it, or he wouldn’t have prescribed it! I told the lady that a hospitalist prescribed it, and there was no way I was going to be able to get him to sign a prior auth. She said a new prescribing doctor could do it. I hung up then without saying a word, mad that I didn’t have an old-school phone to slam down on the hook! I just don’t understand why this has to be so hard to take care of with insurance companies.
Amanda was back for the PICC forever. A 15-minute procedure took well over an hour. She said the nurse tried first to have it done bedside, and she had to set him straight on why it was ordered in IR. A doctor did the procedure and then left to have the fellow finish. The fellow did a horrible job and didn’t even get the stitch tight. They are usually really tight and close to the skin. They do this so it can’t be ripped out; this one was almost dangling. To boot, they had to change the dressing and hold pressure four separate times because she was bleeding so badly. It was the worst PICC line insertion she’d ever had.
She was hurting, and by the time she got out, 3 pm for a 15-minute procedure scheduled for 11 am, she was miserable and in pain. They wouldn’t give her anything for the pain either. It was an emotional support fry and refresher kinda day! I needed a few things from the grocery store, so I grabbed them while they made a refresher at the StarBs in a Randall’s grocery store. We were both hungry, too, so we stopped by and grabbed some salads from Salata close by. We’ve already eaten there enough to get another $7 reward. Next to StarBs, we frequent them the most. Amanda was frustrated, and so was I after everything. So, needless to say, tensions were high all evening. To be honest I was a bit of a jerk, too. It was just a bad day overall. I had a ton of laundry to do, so I was back and forth to the laundromat. It’s a good thing it’s super close, close enough to still have my WiFi connected to our apartment.
Amanda had talked with the infusion pharmacy about getting more Bumex, but they weren’t sure if they could get more and only had so much on hand. It was an odd drug for home use, and they were a smaller pharmacy and needed to check with a different supplier but would send all they had before the weekend. Amanda contacted the other infusion pharmacy she’d previously put on hold to see if they would have the same issue. It was a frustrating mess. We received a shipment later that was a week’s worth. It was odd since the original pharmacy had said theirs would be delivered on Friday. Turns out the one Amanda called to inquire about the Bumex just arbitrarily shipped a whole setup with meds. Then, on Friday, a week’s worth showed up from the original pharmacy, and they confirmed that a new supplier could keep them supplied with the Bumex. I’m just worried about the insurance; I hope we don’t have issues with things.
Since we were out so late with the horrible PICC line insertion, home health couldn’t make it by Thursday, and Amanda missed IV Bumex all day. Friday morning, I was hoping to sleep in, but the home health nurse showed up promptly at 8:30. She was there to do a teaching session for the Bumex, and Amanda needed a dressing change because the PICC bled even after we left the hospital. The nurse was nice, but her English was lacking, and her accent was thick. She was very limited in speaking on anything outside of the teaching, too. We had questions, but she had a hard time understanding. It oddly made me feel at home living so close to the border! If we were talking tacos or ranch terms, I could have conversed better, but we were talking about more critical things. Amanda could understand her better than I, but still, they could have sent someone a little more fluent in English for a teaching session.
Amanda took a call. She didn’t say who it was, but I could vaguely hear them. I knew it was Vanderbilt; I could tell by the thick Southern accent! It reminded me of back home in Louisiana. They were scheduling things out for us. We have dates now for the second full week of May. We still haven’t decided how we’ll get there, but with all the IV meds and supplies, I think it’ll be easier to drive, staying at my aunts in northern Louisiana to break the trip up.
Amanda felt okay after the first dose of Bumex, and we set out to put some pictures in the bathroom. We’d tried once before with command picture strips to keep holes out of the walls, I want my deposit back. That didn’t go so well on the bathroom walls, though. This time, we went old school and used picture hanger nails. We had a collage of dog bath pictures, including Tank and Zoey, and even our first boxer, “H.” We had Walgreens print the pictures and got matching frames at one of our Michael’s trips. It turned out cute; the best picture was taken here in the apartment. When Amanda talked about putting the collage up, I agreed but told her I wanted to decorate our toilet paper drawer with pictures of my choosing. We have a tall, narrow cabinet between the vanity and toilet. I had to take the toilet paper holder off to get it to fit, but the rolls fit perfectly in a drawer. The side of the drawer was begrudging agreed to be my decorating area. What better to choose than shots from movies that had the funniest pooping scenes, Dumb and Dumber and Bridesmaids!
Poor Teia was working hard on things for us. I called and left a message about the pain med situation. She never called back, but Amanda received notification that a pain prescription was called in. That didn’t fix the prior authorization issues, though. She called the insurance and pharmacy but had gotten nowhere. Amanda was a little confused about it, too. So I had to finally get her the correct number to call to get it fixed. As the afternoon progressed, Amanda started to feel bad. It only got worse, too; the double doses really did a number on her. I think it would be better spaced out and not back to back, but she doesn’t want to get up and pee all night, too. It’s going to be a delicate balance to get things figured out. Right now, she won’t be able to do double doses while I’m gone, either.
I’d text Sybil to see what her schedule was like. This is during a two-week period when she’s mostly gone. She was close by with a neighbor from her side of the complex. She wanted to stop by and show him things in case we needed another hand while she was gone. Tank really liked him and even jumped up on him, which he never does. Sybil wanted to take Tank out for a quick walk and to show the route Tank liked. It was good to meet and have someone else to fill in from right here in the complex.
I am scheduled to get out late tonight for early Sunday morning with work. We talked about it, but with how Amanda feels, I think it’s best to take another trip off. I really need to work; we need the money, and I don’t want to burn all my sick days up. Right now, though, I should stay off. I’ll be here for her infusion on Monday this way, too. They seem to be only getting worse. We’ll be glad for a reprieve of two weeks. After this one, we go every other week for a month. We moved here for things to be easier, and they are, but I just don’t think we realized still how hard this all would be. She’ll do much better once we get the fluid off again. I just don’t know if we can get there without another admission. I hope we can get the fluid off at home, but we’ll see. We both feel after seeing Dr. Nair this coming Tuesday, we’ll be looking at a hospital admission more than likely. Might as well knock Easter out as a hospital holiday; I’m not sure we’ve done that one yet!
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