Tonight's picture was taken on August 22, 2009. Even though Mattie's cancer diagnosis was terminal, and he literally died 16 days after this photo was taken, he was still excited over the fact that he lost a tooth. You will see the tooth was in his fairy box. We bought that box together on one of our Florida trips. It was our tradition.... Mattie would lose a tooth, he'd put it in the box, and then leave the box with a note for the tooth fairy by the side of his bed. Yes Mattie always had something to say to the fairy and a special request. Mattie did not want money! He wanted things like a pasta necklace (yes you read that correctly), or a hot wheel car!
Quote of the day: Back then, in those first days, I was so alone that every day was like eating my own heart. ~ Junot Diaz
Just when I think it can't get worse.... It does!!! I got up at 5am today because my electrician was coming over to help me with lights. Bob is an early riser, and was at my house before 8am. Before Bob came, I wanted to make sure that breakfast was prepped and I could do my morning clean up routine. Once Bob arrived, we went from one light issue to the next. Of course nothing I deal with is ever easy, and therefore the best way to fix our problem is to replace many of the outdoor lights with low voltage LEDs. So he showed me some sites to purchase these lights when I am ready, and then he will come back and install them. Don't you know it though, after Bob left, our outdoor fountain stopped working as did three of our transformers that regulate the outdoor lights. Fortunately in Bob's tutorial today, he showed me that the electrical panels in the garage supply the electricity to these transformers. I examined the panel, realized a switch was tripped and I flipped it back on and voila.... the fountain and everything worked. Honestly! If that was the extent of my day, that would have been enough. But it wasn't!
My dad had his physical therapy session at home. While in his session, I noticed he had a dry cough. I made note of it, but kept on working. After his session was over, my mom insisted she wanted me to take out money from one of her bank accounts. I am juggling a financial nightmare here, so I regulate everything down to the dollar. When I got to her bank, I tried using her card in the ATM. It wouldn't work. Which lead me inside the bank. The bank was very busy! I finally got to the teller and she alerted me that the card I had was a bank credit card, not the ATM card. Naturally my mom has NO IDEA where her ATM card was, so I asked a banker today to help me getting such a card. This may not sound like a big deal, but it was one more thing that pushed my apple cart over the edge today.
When I got home, my goal was to take my parents out for lunch, because I had a therapy appointment later in the day. As I was helping my dad up from his chair, he was HOT to the touch. I couldn't tell if that was from his heating blanket or not, so I grabbed the thermometer. He was running an 101 fever! I got out our in home COVID tests, because I wanted to rule this issue out. His memory care center sent a note out two days ago about a COVID outbreak at the center.
The in home test said he did not have COVID. His doctor was concerned that he could have pneumonia or have a urinary tract infection from the ureter stents that he still has from his last surgery on August 21. So what did that mean? It meant a trip to the ER. My dad did not want to go, but that wasn't an option.
We waited for two hours in the ER waiting room, until we were finally called back. While waiting though, they did blood work and a COVID test. Thankfully I can check test results in real time through the portal on my phone. Any case, by the time we were called back to an ER room, I could see that my dad tested positive for COVID. I told the doctor I did not know how that was possible. He told me the in home kits are antigen tests and the test hospitals use are PCR tests, which are far more accurate. It is ironic, we survived the entire pandemic without getting COVID, which was a miracle as I traveled cross country every other month to visit my parents! It took the memory care center to do us in.
It was a roller coaster ride at the hospital. The doctor was convinced that my dad's symptoms were NOT COVID related, that instead he had to have an infection too! I wasn't going to argue with him, given that my dad has a track record for urinary tract infections, and given that he has ureter stents still in place, there was a high probability that the stents could have contributed to the issue. Any case, we complied with all testing. They gave my dad a chest x-ray, an abdomen and pelvis CT scan and a urine analysis. On an aside, while transferring my dad from his bed to the CT scanning table, they injured his back. Keep that in mind, because even without a back pain issue, it is hard for me to get my dad up and mobile.
Throughout all of this, my dad's heart rate was running high and his blood pressure was low! When all results came back, I could see he did have a urinary tract infection, but according to them it wasn't remarkable enough to merit treatment. They told me that they would expect a slight infection with ureter stents! Sorry, I wasn't happy with that answer. The nurse led me to believe that given the late hour, my dad would be admitted. However, the ER doctor came in minutes later and said my dad was instead going to be discharged. Do these two people talk to each other??? Have we heard of coordinated care??? The system sucks, it is ruled and regulated by insurance, and don't get me started about their lack of care and concern for the family caregiver.
The doctor prescribed Paxlovid to ease the symptoms of COVID. He mentioned that this drug could poorly interact with some of his current meds. The doctor promised he would come back with a list of meds that my dad should stop taking while on this drug. Not only did he not do that, but he sent the script to my pharmacy which closes at 8pm. I had the nurse track the doctor back down and first get answers for me about which meds my dad can't take while on Paxlovid and second to send the script to my 24 hour pharmacy I used to use when I lived in the city. Now why did I have to tell him this? Shouldn't he be asking those questions! I am amazed that doctors discharge older patients without asking the important questions.... is there someone to pick up your med and provide care for you? Not only don't they ask, I am beginning to think they don't care. The system has blunted out whatever compassion they had before entering medical school. Needless to say, I left the hospital very upset, as I could barely get my dad out of the wheelchair and into the car. His back hurt that much and he is depleted from having a high fever.
After six hours in the ER, we finally got home at 9:30pm. My day did not stop there. NOPE! I had to fed Indie, and I made soup for all three of us, since we hadn't eaten since breakfast time. I got my add up to bed around 10:30pm, and set up a large aero mattress for my mom, clear across the room from my dad. She insists on being in the same room as him, and frankly given his mental state, he does need supervision. But what does all of this evoke in me??????????????? The simple fact that I miss my husband. I miss the person who was there in the past, caring about my well-being and welfare. Who would offer help at a moment's notice. Now I balance the impossible alone and what you clearly see spending any time in a health care setting, is that you need a spouse present to help advocate for you. So in addition to being exhausted, and heart broken, I worry about my future, because at the end of the day the help one needs when sick typically comes from one's spouse. I saw lots of examples of spouses supporting each other in the ER waiting room! A VERY sobering day indeed.
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