Saturday, March 16, 2019

Saturday, March 16, 2019

Tonight's picture was taken in March of 2003. Mattie was 11 months old and that was his first plane trip to California. I had to attend a conference and my parents watched Mattie while Peter and I went to the conference. As you can see Mattie had a way of filling up a home. I still remember snapping this photo. You can practically feel Mattie's energy. 


Quote of the day: Paul is part of an experiment. Instead of giving him morphine for his kidney stones, they are testing the healing power of laughter. ~ Unknown


Another day and NO kidney stone collected. It is very frustrating, as I consuming more water than one person should have to in a week. Between Sunny walks and chores, I spent the rest of the day glued to the computer. Trying to update our website, work on our March newsletter, and of course begin to revamp the Walk 2019 website. 

When I went grocery shopping yesterday, the clerk checking me out commented on how lucky I was to be able to go shopping during the work week. I admit that yes I have this flexibility, but then I also told him I do work around the clock. There is no down time, not even on the weekends. I am sure he thought I was either exaggerating or not telling the truth. Either case, when I stop, so does the Foundation. It is a hard reality to try to describe to someone, especially if you haven't had the experience of running your own company. 

Friday, March 15, 2019

Friday, March 15, 2019

Tonight's picture was taken in March of 2005. Mattie was lying between Peter's feet and clearly did not want his photo taken. I recognize that pose VERY well. Ironically, Mattie was fascinated by Peter's camera and its flash very early in life. I would say the camera intrigued Mattie even as a baby and clearly as a toddler Mattie wanted to know where that bright flash was coming from. He would track it, follow it, and reach his hand out to grab the actual flash attached to the camera. 


Quote of the day: They call them kidney stones. Imagine trying to swallow and digest a running chainsaw everyday, for a couple of weeks. ~ Unknown


I was listening to the radio the other day and they spoke about a phenomenon I never heard of before... Selfie Related Trauma! Just so we are on the same page, a Selfie is now defined in the Oxford dictionary as 'a photograph that one has taken of oneself, typically one taken with a smartphone or webcam and shared via social media.' Selfies have been linked to a large number of mortalities and significant morbidity worldwide. These serious injuries and deaths occur during or after having taken a photo of one's self, with the accident at least in part attributed to the taking of the photo.


The United States Department of Transportation estimated that during 2014, the so-called "year of the selfie," 33,000 people were injured while driving and using a cell-phone in some fashion, which can include talking, listening, and taking, uploading, downloading, editing, or opening of selfies. A 2015 survey by Erie Insurance Group found that 4% of all drivers admitted to taking selfies while driving.

A study was done on this phenomenon, and I attached a link below to the study, in case you want to read it for yourself.  When I think of a trauma, I think about a psychological issue, that results from an event. But with Selfie Related Trauma, there seems to be the reverse...... there is a psychological component FIRST that leads to an event (accident or death). Heavy selfie-taking and sharing selfies on social media sites and smartphone addiction are closely associated with narcissism and psychopathology. So what does this all mean? Do some people have a certain personality type that makes them more susceptible to cell phone usage and taking selfies?  Therefore, are these individuals more likely to be involved in accidents? I don't know, but it seems like one can draw all sorts of conclusions from these studies. 

What I do know is as a city driver, I see more and more distracted drivers all around me. Glued to their phones while driving, which is scary to see, as vehicles can be a weapon if not properly used! But the bottom line is cell phones cause great distraction, which isn't good if you are by the edge of a cliff. Which apparently is the preferred site to take a selfie (according the study below). What did we do before the cell phone? Before our minds were distracted and hyper alert to the bings, noises, and sounds? 

Media-based clinical research on selfie-related injuries and deaths:
https://www.journalagent.com/travma/pdfs/UTD-83103-CLINICAL_ARTICLE-DOKUR.pdf

Thursday, March 14, 2019

Thursday, March 14, 2019

Tonight's picture was taken in March of 2004. Classic Mattie.... as he never went anywhere without his sippy cup. Filled with MILK! So much for milk being good for the bones. It did not help Mattie's bones in any way. In any case, I clearly snapped a photo of Mattie walking around our home with Peter's ball cap on and I can tell just by looking at Mattie's facial expression that he was multi-tasking and did not have time for my picture taking. 


Quote of the day: I should start naming my kidney stones like they do hurricanes. ~ unknown


I tried to explain on Wednesday's blog my frustration. Frustration I had from dealing with the hospital regarding my kidney stones. I mentioned my feelings to a friend, a friend who has been advocating for childhood cancer for over twenty years. In any case, she did not like what I was reporting to her, and she confirmed I had every reason to be upset, bordering on angry. 

I have been sitting with these feelings and then today it dawned on me.... why not write to patient advocacy at the hospital? I can't tell you how many times I called these advocates in to intercede when Mattie was in the hospital. These folks are well trained, listen, ask intelligent questions and then evoke change. In fact, I remember it got to the point where I would tell a medical provider that I was not happy with their treatment of Mattie and that I was going to call patient advocacy on them. Just the notion of patient advocacy being involved made people jump and they took me seriously. 

Patient advocates are employed by the hospital to truly listen and manage the issues and needs that arise for patients and families while undergoing medical treatment. I assure you there are a ton of issues that arise and most of them revolve around POOR communication between providers or providers to patients. 

Given that we are donors at the Hospital, I naturally know who heads up patient advocacy. I wrote the following letter today and sent it to my contact. Keep in mind I tried to remove names and other identifiers for this blog posting. 

---------------------------My Letter ------------------------------

I am writing to you about a very frustrating, and in my opinion an inappropriate, experience I recently had at your Hospital, not as a donor, but as a patient.  I am currently being treated by Dr. P for kidney stones. I was referred to him by my own urologist. I have been working with Dr. P since March 5th.  My concerns do not involve Dr. P, but rather the Hospital staff that I have had to communicate with regarding my condition.

Due to the nature of where my kidney stones are, Dr. P scheduled tentative surgery for me on March 21, in case the stone does not progress on its own.  Therefore, I have received calls from the Hospital to prepare me for the date, where to report to, the length of the surgery, and expected recovery. Then this Monday, March 11, I received a call in the afternoon. The representative I spoke to was named J, and she explained that she was calling about my surgery and was going to do an “intake.” 

I think your Hospital and I have two very different ideas of the word “intake.” I was expecting more of a medical interview or more preparatory information regarding my surgery. However, what I quickly realized was that this was not a medically related call at all. If J had explained in her introduction that she was from the billing department and was going to conduct a billing intake, I would have felt better prepared for her conversation. 

J focused on how I was going to pay for the part of the surgery not covered by insurance. Literally J was throwing all sorts of numbers at me, such as the price of the surgery. She was progressing through fees and deductibles so quickly, with no regard to the fact that I did not have paper near me to take notes and I did not have a copy of the cost of the breakdown of services she was quoting me. As the patient, I was clearly working at a deficit. She then asked me how I planned to pay for my deductible. I truly had no response for her because I felt like I needed more facts about my insurance plan before proceeding with how I was going to pay for this. Because of my hesitation, J started talking to me about payment plans and said that she would call me again this coming Monday to follow up.

The call was frustrating because I felt ill prepared, I did not have the facts in front of me which J had, and I did not realize we were having a billing call until she jumped right into it. Unfortunately it did not end there. Somehow my concerns about billing from that phone call were translated into my medical care. When I went for a follow up visit with Dr. P on March 13th, I was first greeted by his medical resident. Literally his resident said he “heard” that I had issues with paying for the surgery and therefore perhaps did not want to go through with it. I was absolutely stunned!!!! As I never expected my conversation with the billing department to make its way into a medical conversation, especially since I felt that instead of getting sound medical advice, I was getting advice based on whether I could pay for the surgery. 

Once I explained to the resident why I hesitated with J, he understood immediately that I just wanted more specifics from my insurance plan, but that I could pay for the surgery. Yet I felt judged by the billing department and in the initial conversation with the resident. I would like to think that your Hospital does not pick and choose who will get services or the quality of services based on how much they can afford. This was never my experience before with the Hospital. As you know we have a long-standing relationship with the Hospital as Mattie was treated for Osteosarcoma for 14 months and died at your Hospital. I have great compassion for those members of our community who are unable to pay for their medical care, and now truly understand how they must feel, as I was treated like that this week. 

So just to recap, my issues are the following: 1) A billing phone call is not an ‘intake.’ At the very least it should be called a billing intake, so patients understand they are going to be talking about insurance and their account. Given that patients are not working with the same facts in front of them as your billing representatives, more detailed billing information needs to be provided on the call in a methodical, clear, and better paced manner. 2) What transpired in this billing intake should not have translated down to the patient-doctor relationship. I am coming to consult with your doctors for medical care. I want them to give me sound medical advice based on their expertise and experience, not clouded by how I plan on paying for the surgery. 

Given my experience working with Julie Andrews during Mattie’s care, I know the benefits of patient advocacy. Therefore, I decided to write to you in hopes that these issues will be taken seriously and that future patients do not experience what I did this week. I look forward to hearing from you about this matter and I am happy to answer any additional questions. Much thanks for your time and attention.  

Sincerely,

 

Victoria A. Sardi-Brown, PhD, LPC

Co-Founder and President

vicki@mattiemiracle.com

202-549-8036

Wednesday, March 13, 2019

Wednesday, March 13, 2019

Tonight's picture was taken in March of 2004. Mattie was almost two years old and very engaged with his environment! Peter snapped a photo of us playing around. I did not know he was taking it at the time, but I am so happy he caught this moment on camera. 


Quote of the day: A kidney stone walks into a bar. Bartender says, 'What'll you have?' The kidney stone says, 'No thanks, I'm just passing through.' ~ Unknown


My day started bright and early with going to the hospital for a second set of xrays. I was really hoping they would tell me I passed the stone without me knowing it. NO such luck! With kidney stone pain, it can come and go, or perhaps I have gotten so used to the pain, that I don't know what it feels like to be 'normal' anymore. 

Any case, while waiting to be called for an xray, I noticed a familiar radiology tech. Mattie never worked directly with Brandon (the tech), only his cousin Jey. But I knew who Brandon was as I met him many times Mattie was undergoing testing. It was ironic that Brandon helped me today, because as I was walking to the hospital I literally looked at the building and thought to myself...... my son died in this building and for the most part no one in there even knows who Mattie was, because of turnover. That commentary always upsets me as the nature of Mattie's hospital has changed so much since we lived there in 2008 and 2009. Seeing Brandon today reminded me of my days traversing the hallways with Mattie. 

After the xray, I went up for my doctor's appointment. Unlike last week, this week, my appointment started off with a resident. I realize people need to learn and Georgetown is a training institution, but I truly have little patience for residents. So much so, that when Mattie was in the hospital, residents and medical students knew NOT to come in our room. Because I would throw them right out. Mattie's day to day situation was so volatile and he was so fragile, that we really did not need a clueless and insensitive resident coming in and making us repeat our story over and over again. 

Today's resident was a pip. Nothing wrong with his personality or demeanor, however, he started off the conversation by saying that he heard (probably from the person who called me a day or two ago about financing the surgery) that I had concerns about paying for the surgery. He kept going on and I interrupted him. I explained that the woman on the phone was less than professional. Unfortunately there are many in the health care field that shouldn't be there! This woman called me and said she was going to do an intake. So I was expecting something medical oriented in nature. Forget it! She simply called to tell me the pricing of the surgery, anesthesia, what insurance would cover and what I was responsible for. This caught me by surprise, as I had no paper with me, and yet she was rattling off numbers, deductibles, and so forth. Needless to say, I stopped her several times to write things down (when I located some paper) but was non-committal as to how I was going to pay for this because I really wanted to check her facts and to make sure she investigated this potential claim. Therefore she agreed to call me next week to find out what I learned. 

So this leads me back to this resident. I basically told him the whole story. Then I said to him I had NO IDEA that the way I was going to pay for this surgery should influence his medical decision one way or another. Either I need surgery or I don't need surgery. Naturally we can pay for the surgery, but that wasn't the point, and I certainly did not expect to be having this conversation with my medical provider.  I gave the intake person a hard time because her whole demeanor was hostile and she had a lack of regard for the fact that I was the patient. 

Bottom line, the xray shows that my stone moved further down in one week's time. So now they are giving me two more weeks to pass it naturally. As we all know, no surgery is better than surgery. 

This is a photo of my new friend... this collapsible container with a screen at the end comes with me where ever I go. The thought is I will use it to catch the stone. We can only hope.  

Tuesday, March 12, 2019

Tuesday, March 12, 2019 -- Mattie died 494 weeks ago today.

Tonight's picture was taken around Mattie's third birthday in April of 2005. That year we had a Blues Clues themed party. My parents, Mattie's aunt, uncle, and cousins were in attendance. In fact, I believe we even had a university student come and perform magic and introduced the kids to his pet rabbit. The reason why I chose this photo tonight is it will help explain my posting below. 


Quote of the day: Beware of the people who can endure the pain of kidney stones, they can survive anything. ~ Rachana S.

Sunny and I traversed three states today..... DC, Maryland, and Virginia. The day started early with Sunny getting groomed. His groomer is not around the corner from me, as it takes 40 minutes or so to commute to her in Virginia. From grooming, we got back into the car and drove to Silver Spring, MD. Which literally took us close to an hour. Why did we made the trip there? Because we went to Creative Cakes to pick up tonight's anniversary cake. 

It isn't everyday that Mattie Miracle turns 10! To me that is a big deal, especially when I will never forget the comments I received shortly after the Foundation got its 501c3. Literally we had seasoned Foundations telling me that we would never last longer than 3 years! Lovely, no? Nothing like a challenge or a threat when grieving. 

Needless to say, not only did we survive three years, we have made it to ten. Yet no matter how much time goes by, I will never forget those comments that were made to me during such a fragile time. Every March, we host our core volunteer appreciation dinner. However, at tonight's dinner we will also be celebrating our anniversary with our core team. A team comprised of friends, many of whom directly knew Mattie, and supported us throughout Mattie's cancer journey. 

When I had to pick an anniversary cake for tonight's event, I thought about which bakery to use! I had to think about it because I am not wild about most of the local bakeries around me. It was Peter who reminded me about Creative Cakes! How do I know this bakery? I know it because they designed many of Mattie's birthday cakes. I can still remember Mattie and I driving to the bakery to pick up his cakes, and instead of Mattie in tow today, I had Sunny. Needless to say, it seems noteworthy to mention that the bakery remains thriving and Mattie is no longer with us. 

Given that the Foundation is named after Mattie, there was NO way I could get a chocolate cake to celebrate this milestone. I had a feeling Mattie wouldn't be happy with me if he saw chocolate, so instead I picked the bakery's favorite cake.... a White Chiffon Cake with Fresh Strawberries and Swiss Meringue Icing. 

We took a group photo tonight of our core volunteers. 

Row row (left to right): Peter, Christine, Vicki, Junko, Tina and Ann

Back row (left to right): Dave, Denise, Marisa, Peggy, Debbie, Carolyn, Katie, Ali, Dawnee, Jane and Mary


The cake on display. 














These are the special ornaments created by my friend Ilona for this event. Ilona runs a childhood cancer non-profit. The proceeds from these gifts went directly to helping kids with cancer. 








We chose to have our event at Magnolia's on King, in Old Town, Alexandria. We had the whole second floor to ourselves and it truly was our best volunteer appreciation dinner yet. The historic home atmosphere, professional staff, and great food made the night a real treat! 





Opening up our 10th anniversary gift to our volunteers! My friend Christine opened hers to show everyone! So happy we worked with Ilona on developing these thank you gifts!

Monday, March 11, 2019

Monday, March 11, 2019

Tonight's picture was taken in March of 2004. Mattie was almost two years old and as you can see he and Peter were playing on his foam mat. Play included sitting under a big umbrella. With Mattie, you always had to think outside the box and be on your toes. As Mattie had two modes.... very on and off!



Quote of the day: When I grow up, I hope I can experience the agonizing pain of a kidney stone..... said no one, ever! ~ Unknown


I just got off the phone with an intake person at the hospital. She called to talk about a pending surgery I am supposed to have on March 21. When you say an intake, I thought she was going to talk to me about how to medically prep or what to expect afterwards. Forget it! Nothing of the kind!!! What she wanted to talk about was how we were going to pay for this surgery. Even with insurance, the price of the surgery shocked me. Mainly because it is a 90 minute surgery. 

Here is a surgery I don't want, so signing up for it, isn't exactly exciting, nor is paying for it. I keep hoping I pass this kidney stone and that these surgery related calls STOP! As she alerted me that she is calling me next week to find out our payment method.  

In honor of tomorrow's volunteer dinner, I put together four flower arrangements... with a touch of orange and yellow. 

A close up. 

Sunday, March 10, 2019

Sunday, March 10, 2019

Tonight's picture was taken in March of 2007. We were driving from Fort Lauderdale to Key West, FL. Along this long drive, we stopped to walk around and take a break. We came across a store with all sorts of shells and they had these cute looking hand shaped seats. Mattie got a kick out of sitting in a hand! 



Quote of the day: Your kidney stone test came back. You did not pass. ~ Unknown


Last night I did not fall asleep until 4am this morning. I was dealing with pain and discomfort and I was truly hoping the kidney stone would pass. It hasn't! Clearly this 3mm nightmare prefers living inside of me. So in jest, I am posting kidney stone humor. 

In January, my friend in cancer, delivered to me 25 hand crafted Mattie Miracle ornaments. She made these beauties for a special gift to give to our core Foundation volunteers. This coming Tuesday, we are hosting a little 10th anniversary celebration dinner with our devoted volunteers. 

It is my hope to surprise them with gifts and to let them know that as payment for these gifts, we made a personal donation to my friend's Foundation, which grants iPads to children/teens with cancer. So in essence the gifts are also supporting children with cancer.

Peter and I have slowly wrapped each of these gifts and they are now ready to go for Tuesday's dinner. 

Of course, no day is complete without a long Sunny walk. We took him back to Roosevelt Island, which he loves. It truly felt more like spring today and even the robins were out and about. Can you see them bathing in a puddle?

I am a Canadian Goose fan. They really are about the only real sign of life in nature during the winter months. 

What the Island looks like now before the leaves unfurl. But soon this will all change and it will be back to being lush and green.