Mattie Miracle 15th Anniversary Video

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

June 19, 2020

Friday, June 19, 2020

Friday, June 19, 2020

Tonight's picture was taken in August of 2007. Mattie was five years old and visiting my parents in Los Angeles. That day we took Mattie to the Los Angeles Zoo. It was an extremely hot day. So much so that we bought Mattie this spray bottle, that had a fan attached! That bottle and fan came on many adventures with us and to this day, I still have this bottle in my closet. 








Quote of the day: Today's coronavirus update from Johns Hopkins
  • number of people diagnosed with the virus: 2,221,079
  • number of people who died from the virus: 119,112

My dad was scheduled to have an endoscopy and colonoscopy today at 10:20am. We were told that the process would take over an hour and we expected to hear something by noon. Anyone who has ever had a colonoscopy knows that it can be a debilitating prep! You have to fast and also consume noxious fluid that is like an intense laxative! Making you have successive bowel movements. My dad was asked to take these tests because in a short period of time he lost over 30 pounds. He has been experiencing nausea and lack of appetite too. Then this week he came to the hospital with an impacted colon. So his GI doctor felt he needed to explore possibilities for these symptoms.

At noon, I called the hospital only to find out that my dad's nurse was on a lunch break. What I did find out was my dad's testing was postponed! I lost it! As he was unable to eat food from the night before. I wanted answers as to when his test was scheduled for, and I wasn't waiting for his nurse to get back from lunch. So I called to speak to the charge nurse. Who was attitudinal! She told me she was managing 32 patients and couldn't possibly know everything about them! I basically told her that wasn't my problem, as I have only one patient I am concerned about and as the charge nurse it is her job to know what is going on with patients under her charge. She aggravated me and I returned the favor, and then also called the gastroenterology practice to find out what the hold up was!

Needless to say my dad's nurse returned my call within minutes and told me my dad's testing was scheduled for 4pm! Then around 4pm, to my surprise I received a phone call from my dad's internist's office. They wanted to discuss the results with me! Which means that my screaming got things moving! My dad got the testing at 2pm, and not 4pm! Thankfully testing shows no grows or tumors of any kind. There is NO known physical explanation for my dad's weight loss, nausea, and loss of appetite! There may not be a physical explanation but I stand my ground.... there is a psychological one. Being quarantined for three months during the coronavirus, was VERY BAD psychologically and socially for my dad. It was a major set back for him and it started a negative spiral! We are all thrilled my dad doesn't have cancer and we are also noticing with IV hydration, his disorientation and confusion have significantly lessened. My goal is to get my dad on a walking routine and consuming fluid daily! He doesn't like to drink fluid, but it is necessary as dehydration exacerbates dementia. My dad returns home tomorrow and I know he is looking forward to leaving the hospital and seeing us. 

Meanwhile, I worked on a letter for my dad's hospital, which details the MANY issues that arose during our ER visit on Tuesday. I am glad the letter below was sent to the quality control department! I feel my letter merits a response.................................


Thank you for returning my phone calls and for providing me with your e-mail address. As I feel my observations and experiences within your ER this Tuesday are noteworthy and of great concern. I live in Washington, DC and have extensive experience working with hospital systems. I am in town now to help care for my dad, who was admitted to your hospital at the end of May and again this week. 

 

On Tuesday, while home with my dad, I realized he had an impacted colon and needed immediate attention. So my husband and I drove him to your ER. My dad was in terrible pain and every minute sitting in a wheelchair was unbearable for him. When I arrived inside the hospital, we were greeted by a nurse who took our information and walked us through the process of registering. At that time I was told I couldn't stay with my dad. However, I explained that my father has dementia and needed a family member with him throughout the process. The greeting nurse understood and allowed me in. 

 

We proceeded to the check in window and again that went smoothly. We were told to sit in the waiting area and that a triage nurse would call us. This is where it went down hill. We waited for 2.5 hours and throughout that time no one kept patients informed about the wait time or where any of us were in the cue. My father was bent over in pain and it was clear he was not a priority. It was only because I started complaining at 2.5 hours that we were finally called back to see the triage nurse. I want to mention that I wasn't the only person who had issues with the long wait. Other patients were very frustrated and visibly agreed with me as I was complaining. I was told the wait was so long because other critical patients were coming in by ambulance and being addressed. Though I understand and realize patients must get triaged based on critical needs, it is very clear that Providence St. Joe's is under staffed and can't effectively manage the needs of patients who walk through your doors. This is of great concern to me since this is my parent's local hospital. Given what I experienced on Tuesday, I have no confidence that your facility can handle critical cases in an emergency. Much less handle patients who have dementia. 

 

I am troubled by the lack of regard for vulnerable patients. Patients who have dementia and other cognitive or mental health concerns need a family advocate present in a hospital system. I understand the issues surrounding COVID-19, but these vulnerable patients can't possibly receive effective treatment and care if your medical team doesn't have the full picture of the problem. This is where the family advocate is vital, as we are a crucial part of the treatment team, and my dad is lucky that I am assertive and understand how to negotiate my way through a hospital system, because if I wasn't with him, I know his visit would have been a disaster.

 

Case in point, after the triage nurse talked with us, she then said I wasn't allowed back into the ER. I told her, NO WAY, that I had to come. She told me she would talk to the manager. I was asked to go back to the waiting room, and she proceeded to take my dad into the ER. By the time she came back to get me (because I was given permission to come back into the ER by the manager), I found my dad in the ER hallway, alone, and holding a urine specimen container. He had NO IDEA where he was, or what he was doing. He also had NO IDEA why he was holding a container. It was a disheartening scene, one which I photographed and happy to share it with you. If your hospital expects family members to leave you with their vulnerable family members, then you need a system in place to help shepherd these patients, so the process does not add to their disorientation, confusion, and fear. 

 

As promised, here is a list of the concerns as we experienced them:

  1. A 2.5 hour wait time, with no updates or interfacing with staff during that time.
  2. No system in place to help patients with dementia process through the ER.
  3. It is very clear the ER is under staffed and the staff who are there are over worked. This directly affects the quality of care provided to patients. 
  4. In the ten hours I was in the ER with my dad, we NEVER saw a medical doctor. Only a nurse and physician's assistant. Both were competent and lovely, but patients expect to see a physician when in an ER. 
  5. Throughout my time in the ER, many patients around my dad's bed (#12) were calling out for help and a nurse. Of course NO ONE was around! Nurses are managing too many patients and unfortunately are assigned patients in multiple areas within the ER. So one's assigned nurse isn't even physically stationed within the area of the patient to seek help or ask questions. In fact, I would say that several hours went by between nursing visits. Which was disorienting to my dad, as he needed a lot of explanations and reassurances about what was happening to him and why he was in the hospital. How would these concerns and fears be managed if I wasn't there? I know the answer.... they wouldn't be!
  6. My dad was in the ER for ten hours. At 10pm, I complained again and spoke with Sabrina, the night charge nurse. I demanded that my dad get an IV for fluids and some food. Why wasn't an IV inserted during these ten hours? Given that it was clear my dad was dehydrated (drawing his blood was next to impossible, as his blood was flowing like molasses), and dehydration exacerbates dementia, it leaves me wondering why he fell through the cracks.   

 

I am happy to discuss these concerns further, and it is my hope that this email will get passed along to your upper management. I am saddened to see how Providence St. Joe's is now managed. I remember volunteering at St. Joe's when I was a teenager, and it is very clear this is NOT the fine institution it once was. I look forward to hearing from you, as I feel my email merits a response. Much thanks for your time.

 

No comments: