Tonight's picture was taken in June of 2009. This was Mattie's SECOND birthday party! Celebrating his 7th and last birthday. Mattie's actual birthday was celebrated at the hospital and then my friend, Christine, hosted this special party in her backyard. As you can see, her husband, James, surprised Mattie..... dressed up a in a roach costume and holding a cake in the shape of a roach! Understand that Mattie LOVED roaches because he knew I HATED them. I am quite certain Mattie never ever saw a live roach (lucky him!). In any case, it was a party to remember hosted by friends who who would do anything to make Mattie happy!
Quote of the day: No matter how bad things are, you can always make things worse. ~ Randy Pausch
Yesterday was quite the day. I got up at 5:30am in order to do my household chores, get my dad up, showered, and dressed. Then downstairs for breakfast, off to his memory care center, so that I could go to my annual physical. However, when I went to wake up dad up yesterday morning, I found him already up and walking aimlessly around the bathroom, opening and closing every drawer in the bathroom. That was my first clue something wasn't right! After I showered him and got him dressed, we headed for the staircase to go down the steps. I had a hard time getting him downstairs, it was almost like he forgot how to walk and how to negotiate stairs. That was my second clue. Because I wanted to go to my physical appointment, I decided to bring him to his memory care center, as scheduling a physical takes a year's planning and I did not want to miss that appointment. As I rarely focus on my own health.
On an aside, my long time physician of over 20 years retired. She is my age, and decided to retire early because like me she isn't married, has no children, and can't rely on her siblings to age together. When a friend invited her to Hawaii to age and grow old together, she decided to do it, while she still could. I totally appreciate that hard decision. But change for me is not easy, and I have had to face a lot of it! However, despite not liking the fact that I needed to meet a new doctor yesterday, I went into the appointment with an open mind. Certainly this new doctor is not my former doctor, but I have to say..... he's lovely! He is warm, empathetic, and an excellent listener. He also values psychosocial care! Overall, he wants to help and is collaborative about medical care. Needless to say, I shared with him in two minutes all the challenges I am now facing. Want to know what he said? First he said, I DID NOT deserve this and second, he said given all the incredible daily stressors and life changes it is remarkable that for the most part my health is good. To my surprise he did tell me that they were all worried about my weight. My former doctor did not tell me this, as I guess she felt I had enough on my plate. But I have lost so much weight that my body mass index is 18, and yesterday I learned that with anorexia it is 16. He quickly understood that I do not have an eating disorder, but a life disorder! After my appointment was over, I got dressed and waited for the nurse to give me a pneumonia shot. When she came in (and understand I have known her for 20 years too), she said..... the doctor says you are such a lovely person!
By the time I got home for my appointment and running chores, my mom was besides herself. She was hungry and wanted lunch. But I noticed a message on my answering machine (yes I still have one of those!!!). It was my dad's memory care center calling about my dad's odd behavior. Turns out that my dad was walking around the center desperate to find me or my mom! He was also looking for a phone to call us. They felt he was very disoriented and confused. So while picking my dad up, I text messaged his doctor. I was going to bring my dad to urgent care, but the doctor said to take him immediately to the emergency room. So that is exactly what I did, with my mom in tow. We were in the ER for over 8 hours. As soon as I checked in, they immediately took our issues seriously. We were triaged to the front of the line. Things were happening quickly while in the ER waiting room..... EKG, blood work, and nasal swabs. They also assessed him immediately for a stroke. In fact, the triage nurse wanted to know why I waited so long to take him in, since you have about a four hour window to get treatment if you have a stroke. Well I did not take him in earlier, because I did not deem him as having a stroke. Turns out I was correct! But those of you at home who worry about identifying a potential stroke in a loved one, just remember FAST (Use the F.A.S.T. acronym: Face (ask the person to smile and check for drooping), Arms (ask them to raise both arms and check for drifting), Speech (ask them to repeat a simple phrase and check for slurred or strange speech), and Time (call 911 immediately if you see any of these signs).
The ER was super busy. There were several patients around us dealing with drug overdoses and truly the heroic efforts of the nurses were incredible. They handled each of these patients with dignity and professionalism, which wasn't easy given how the patients were lashing out of them. Make a long story short, my dad had two CT scans, one of the brain (ruling out a stroke) and one of the abdomen (as his stomach area was distended and I am sure they were trying to see if there were stones, fluid, or blood building up in the abdomen area). They did an Xray of his lungs, urine tests, and lots of blood work. Starting a PICC line in my dad is SUPER hard. He has small and jumpy veins. So it takes someone with skill and patience to access his veins. They landed up putting in a PICC line in both arms.
I have to tell you seeing my dad's stomach distended reminded me of Mattie. At the end of Mattie's life he developed ascites (a build up of fluid in the abdominal cavity). Truthfully Mattie looked pregnant. That was how distended his stomach area was, which required a procedure to drain the fluid from the area. Ascites occurred because of his disease progression. So even though my dad doesn't have cancer, you can connect the dots and see what I immediately thought last night when I saw this.... I thought my dad had a tumor and ascites.
Thankfully my dad doesn't have cancer, he did not have a stroke, and was started on a broad spectrum of IV antibiotics, as they were certain he had an infection. They have run lots of tests to determine the origin of the infection and I think we are quite certain it is a urinary tract infection that turned to sepsis. Just like he had in 2020, which started his downward spiral. However, what the ER treatment team told me is that I caught the problem EARLY, as there are three stages of sepsis, and he is in stage one.
Now what I am not mentioning is managing my dad's disorientation, his countless questions every two seconds, and his desire to leave the hospital and go home. I told him that could not happen, because he needed to be at the hospital to manage the infection. That this was something I couldn't manage at home, nor could I manage his aFib. My dad has a pacemaker, but whenever an infection happens of this magnitude it affects his heart rate. Needless to say, I waited until my dad was admitted to one of the hospital units. He can't advocate for himself or accurately report information. Therefore it was crucial that I interfaced with the treatment team. I pushed through that exhausted feeling and carried on. We did not get home until 2am and of course my mom wanted food! So I made cream of wheat, because anything else would have literally made me sick.
Also note that I am balancing NO HEAT on the second floor of our house. So I got up at 7am because I was awaiting professionals to help me (naturally when I wake up early, they don't come early!). My mom slept downstairs last night and though I want to get to the hospital this morning, I am still waiting for the HVAC person to come over and resolve this problem. I feel like a firefighter, triage nurse, and juggler all in one. Any case that is my update for the moment, and wanted to write something, because I never know what the day will hold and whether I will have the energy to write later.
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