Tonight's picture was taken in August of 2008. This was Mattie's first week in the hospital. We got to meet Linda, Mattie's child life specialist that week, and I honestly do not know how I would have survived Mattie's journey without her. She was our everything and a fierce advocate for our family. That day, Linda set up a large roll of paper in the PICU hallway for Mattie to create and paint. Whatever Mattie created, usually had a sun incorporated in it, which is why it is no surprise that Mattie Miracle's logo is of the sun.
Quote of the day: Until this moment, I had not realized that someone could break your heart twice, along the very same fault lines. ~ Jodi Picoult
I checked in with my dad's memory care center yesterday to confirm that they felt comfortable accepting him back today. My dad is stable, he just is chronically exhausted and is dealing with irritation from ureter stents. He literally wants to go to the bathroom every hour! Keep in mind my dad isn't that mobile and changing him on the hour is taxing. After the ordeal I have been through this week, I needed a break from managing my dad's care. I just felt like I was on overload. After dropping him off at the memory center, I went grocery shopping, and did other chores. I can get much more done when my parents are not in tow.
When I got home, I received a call from a representative of the hospital who was basically following up on how things went for my dad while we was admitted. I gave her a mouthful. I told her about how disappointed I was throughout the process and that discharge was a nightmare. I then proceeded to tell her that I am unable to get a hold of my dad's urology office to discuss medical concerns and next steps.
Whatever I told this woman, triggered a call from the scheduler of the urology office. Erika, the scheduler, was not expecting to be dealing with an irate family member. Turns out she was lovely and she was NOT happy with what I was reporting to her. I told her that this urology office is poorly managed and if their patients have a medical emergency they are going to die before actually getting through to a live member of the clinical staff.
When my dad was discharged from the hospital, we never got paperwork from the urology office. So there was nothing specific about managing pain, or what to expect with stents. Having had kidney stones before, thankfully in this case, I know what is personally going on. If I did not have these insights, I would be clueless and in a panic. Since my dad left the hospital on Wednesday, I have been trying to get a hold of my doctor's nurse as well as schedule his lithotripsy procedure (which has to happen two weeks from hospital discharge, as the stents inside his ureters have to be replaced).
I explained to Erika that two nurses have called me over the past two days and I have missed their calls. When I call right back, the only thing I can do is leave a message with the answering service. I never received a call back! I have been so frustrated that I have even tried leaving messages for the doctor through the portal. When I tell you that I have received no answers, other than.... we will call you, I want to scream. Erika was taking notes. She scheduled my dad for an outpatient lithotripsy procedure on August 21. We have to be there at 6:30am. Despite advocating there is no regard for the fact that my dad is 89 years old with dementia, and getting him to the hospital at that ungodly hour is horrible at best. If that was not bad enough, then the next part sent me right over the deep end.
A nurse will not talk with me about my dad! They insist I have to bring my dad into the office for an appointment to be examined for the symptoms he is presenting. I literally lost it! I told Erika that this urology team had access to my dad for four days in the hospital, where were they?! I also wanted to know why they wouldn't give us a virtual appointment. The answer is they have to physically see him. Okay fine! Want to know when the first available appointment is? Try next Friday! Again, this is ludicrous. You have a patient dealing with issues and symptoms, and they expect me to manage this alone for a week! I frankly do not know how this office stays in business and hasn't received a lawsuit from patient negligence! Naturally I asked for the name of the office manager, as she needs to hear what is going on and I need some reassurances that patients and their family members have access to their medical providers.
So I have this going on, and though I wanted a few minutes of peace while my dad was at his center, I did not find them. I was consumed with phone calls. In addition, to this chaos, my neighbor's non-stop renovation project continues on and today a dumpster was parked right in front of my house in the cul de sac. This apparently is against our HOA policy and this set neighbors off and they called the police on my neighbor. I missed this activity, but I mention this because there is no part of my life that is working well, that is tranquil, running smoothly, and is stable.
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