Saturday, June 6, 2020

Saturday, June 6, 2020

Tonight's picture was taken in June of 2004. Mattie was two years old. That day we drove to Connecticut to visit Peter's grandmother, who was in the hospital. We took Mattie to visit Gladys, and he actually handled the whole visit quite well. Gladys loved to eat, and I remember packing some goodies for her, which he enjoyed immensely. 


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,909,077
• number of people who died from the virus: 109,497

So much is going on in the world around us..... from a pandemic, protests, and rioting. Yet for us, today would have been Mattie's high school graduation. Another milestone missed, and another milestone we were not included in. I realize the entire graduating class was unable to experience a formal graduation, but from my lens, though disappointing, it is not the end of their lives or world. Mainly because this closes one chapter, and opens up a whole new set of opportunities for them. Opportunities which Mattie will never have, and we will never experience. It is ironic, that Mattie has been gone ten years, and yet milestones like these don't get any easier to discuss and certainly our support community stays away from this topic altogether. 

In addition to how we are feeling about Mattie's death, we are seeing the city of Washington, DC being transformed before our eyes. This was once the vibrant main street of Georgetown. Now everything is boarded up. 

M street in Georgetown. It is like a ghost town. Typically this would be graduation season and the town would be packed with people celebrating. 

Mattie and I loved Georgetown Cupcake. On any given day, pre-coronavirus, there would be lines up the block to get into the store. Look at it now. 

Even businesses and stores in Foggy Bottom, are boarded up. I would have to say it takes a great deal of inner strength to manage with a lock down for months and to see one's neighborhood being transformed, without having any control over it. 

Friday, June 5, 2020

Friday, June 5, 2020

Tonight's picture was taken in June of 2003. Mattie was a year old. He was sitting inside his VERY LARGE playpen. Which sat in our dining room. In theory, the playpen was for Mattie, but for the most part, he was never in there without one of us. As you can see, it was Peter's turn that day. I remember some days being inside there and truly wanting to put my head down to take a nap. It never happened, but I also knew that everything inside this play space was safe for Mattie. 






Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,893,934
• number of people who died from the virus: 108,920

My dad finally had a hiccup free night. It is my hope that this good trend lasts the entire day. What made the difference? Baclofen! Baclofen is used to treat muscle spasms caused by certain conditions (such as multiple sclerosis, spinal cord injury/disease). It works by helping to relax the muscles. Specifically it can calm the diaphragm and reduce spasm (causing hiccups). I found this drug myself after reading three peer reviewed papers. I even sent the papers to the doctor and requested that Baclofen be tried. As I could hear on that phone that being on thorazine for a week was not only ineffective, but was causing  other symptoms like anxiety, agitation, and outbursts. 

Last night, one of my favorite students, who is now a pediatric nurse, wrote to me after reading the blog. I am so honored that Ariel continues to follow our journey, and I am always touched when she tells me that Mattie influenced her career choice. Ariel read about my dad's persistent hiccups and wanted me to know that in her experience working with pediatric oncology patients, that chemo sometimes triggers persistent hiccups. When that has happened, her hospital used Baclofen. She wanted to know if we tried it! Ariel's email was a true gift. Because I may have read about the effectiveness of Baclofen with patients in research studies, but Ariel's clinical experience confirmed for me that it can work and that my suggestion wasn't off base!

Thank you Ariel! Hearing from you enabled me to have hope that we were making the right decision to change medications. I haven't taught at a university in over 11 years. Yet the wonderful connections I made with students continues to live on. That brings me great pride. 

We took Sunny for a walk on Roosevelt Island today. It was his first time back since his surgery in April! He loved it, but the heat wore him out. Along our journey we found a turtle laying eggs!

Look at these orange fungi. To me they look like a big flower. Mattie would have had a good time examining this and walking on the island today. 

Peter and Sunny! 

The island is very lush and green and in our world of chaos, this was a peaceful retreat from reality. 

Thursday, June 4, 2020

Thursday, June 4, 2020

Tonight's picture was taken in June of 2003. Mattie was a year old and was shown in one of his favorite modes of transportation... on Peter's back. That day we took Mattie to Great Falls in Maryland. He was my nature lover, and it was from Mattie that I learned to appreciate being outdoors. 


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people who were diagnosed from the virus: 1,867,620
• number of people who died from the virus: 108,051

My dad transitioned home from the hospital last night. As I mentioned in last night's blog, he was released counter to what his family wanted. My mom maybe energetic, but she isn't strong and certainly no one trained her on how to help guide and move my dad. So asking her to take this on alone was a real mistake. I was up last night until 1:30am talking to my mom. I know all too well how scary it is to home, feeling isolated and alone, and unsure about how to provide care to a loved one. Though I couldn't do much over the phone, morale support goes a long way. 

Last night, while on the phone with my mom, my dad was hiccuping for two hours straight. He has had the hiccups for ONE WHOLE WEEK. How would you like that? That alone is debilitating. But to have NO PLAN in place to get rid of them, I am sure further set my mom off. Earlier in the evening, I did a peer-review literature search for research on persistent and intractable hiccups (hiccups for longer than two weeks). There is not a lot of empirical research out there, mainly because it is a rare condition. Nonetheless, I found three articles of substance and I literally read them and then wrote to my dad's doctor, suggesting he consider adding one of these drugs to my dad's regimen. Ironically, he took my advice and I am happy my parents have another drug in their arsenal today if this is needed. 

This morning, I called the in home health care company scheduled to work with my dad for the next 9 weeks. They were absolutely lovely and a big difference from yesterday's surly nurse. In any case, my dad's in home assessment with a nurse is scheduled for Friday. So you see the level of support my mom has had? NONE! Two and half days released from the hospital before support in the form of an assessment is provided. Needless to say, when my dad's doctor called me this morning, I was professional but firm. The healthcare field doesn't think about the psychosocial aspects of care nor the ramifications of illness on an entire family system! If they did, they would never have released my dad yesterday from the hospital. 

Our boy graduated today from physical therapy! Sunny tore his knee ligament completely and had TPLO surgery in April. He has been a trooper through pain, surgery, and rehab. But his friends at Veterinary Surgical Centers in Vienna and Leesburg did a great job with him! Sunny's PT calls him, "the professor." The professor actually LOVED going to physical therapy (the great treats helped)! Sunny graduated today and is on the way to a full recovery.

His therapist, Kristy, snapped a few photos. This maybe my favorite. Sunny's therapist reminds me of Julie Andrews. Beautiful voice, but sweet and yet clearly has it all together. She got along splendidly with Sunny. She nicknamed him "the professor." Mainly because of his expressive eyes and the fact that he seemed to be using those eyes to give her feedback on her performance. 

On Saturday, my Mattie would have graduated from high school. I am quite sure Mattie would have had a lot to say about comparing his graduation to Sunny's. 






Sunny on the under water treadmill (click on the video to check it out)............

Wednesday, June 3, 2020

Wednesday, June 3, 2020

Tonight's picture was taken in June of 2002. Mattie was one month old and Peter used to call 
this ......... the Mattie contemplative look! Ironically I feel when Mattie was a baby he looked more like Peter. But as he got older, he looked like me. 




Quote of the day: Today's coronavirus update by Johns Hopkins. 

• number of people diagnosed with the virus: 1,851,530
• number of people who died from the virus: 107,148

As of tonight, my dad is home from the hospital. Basically his care team felt he was strong enough to be discharged. I want to strongly write that this was COUNTER to what his family wanted. I am so sick of our health care system that simply looks at the medicine. Not examining the full patient and the patient's family circumstances. My dad was having trouble with his oxygenation level yesterday. That problem seemed to stabilize today, but then his electrolytes and other minerals were off. He was low in phosphorus, magnesium, and potassium. So the nurse gave him an infusion of these minerals to help stabilize him quickly. Or quicker than an oral supplement. 

Up until today, my dad's nurses have been lovely. Today's nurse, was a nightmare. I can't tell you how many times I called her during the day. I heard enough to feel that my dad was still not stable enough to go home, especially given that he was still hiccuping. My dad is very sensitive to certain medications. On Thursday of last week, he was given a CT scan with contrast to rule out stomach cancer. My dad is allergic to the contrast dye, and this triggered the hiccups. Can you imagine hiccuping for almost a week straight? It is very debilitating, and he is already debilitated from losing 30 pounds, feeling constantly nauseous, dizzy, and exhausted. Not to mention having kidney stone surgery and an urinary tract infection. My dad has a history of persistent hiccups, so typically giving him thorazine works. Thorazine is an anti-psychotic medication, which has other side effects, but typically given over a few days it relieves my dad's hiccups. However, we haven't gotten this lucky now. 

I called his doctor today to discuss the hiccups, and I told him I have been doing some research on hiccups and read about other drugs that are used with success. He basically said he was willing to try whatever I recommended. So apparently I have gone to med school now! I will read through the research papers I downloaded and send them to him with my own recommendations. 

But here's the thing, if a medical system wants to discharge you, the patient and family have little to no recourse. So my dad could either go home or go to a nursing home, but the hospital wouldn't keep him. Even if my mom isn't physically able to care for him tonight. Clearly we weren't putting him in a nursing home, especially during a pandemic. My dad's doctor understood my concerns about sending my dad home and told me about a Medicare 3 day plan. He said this was way for us to submit a claim to Medicare which explains that we disagree with medical advice, and this would allow my dad to remain in the hospital for three more days. Of course, this is NOT what a three day plan actually is. A three day plan has to do with bundling outpatient service fees that occur three days before a hospitalization. So that was bad advice. 

I called my dad's case manager, who explained that I could contact medicare, and open up a case for them to look at my dad's medical notes and case. While the case is open, my dad wouldn't pay the hospital fees. However, after Medicare assesses his case, and if they deem he was indeed medically sound to return home today, then we would have to pay for his hospitalization out of pocket every day passed today. Which is ridiculous!

I have been glued to the phone for days trying to managing my dad's care. It is hard enough advocating for a patient, but MUCH harder doing it by phone during a pandemic. Here are some of the people I talked to today. I was on the phone for hours and sometimes multiple times during the day with the following people.....

Tatiana - nurse
Flora - charge nurse
Paula - Manager of nurses
Suzanne - social worker
Sonya - discharge planner
Angelica - case manager
Attending physician
ER Department
Security

Why the ER department and security? Because my parents thought my dad was taken to the hospital with his wallet, ID and insurance card. My dad had his keys and credit cards tonight, but no one could find the wallet, ID, and insurance card. I literally turned the hospital upside down tonight. I had ER people looking for his things, I had security looking, and the manager of nurses went personally to every floor he was admitted to at the hospital to look for his things. Want to know where they were? In my mom's car! It has been this kind of show. 

But of course, my dad was sent home without regard to whether the house is safe for him, whether he can get to his bed, to the bathroom, and the list goes on. We can only hope that this was the right decision to send him home, and I will know the answer to that in 24 hours.

Tuesday, June 2, 2020

Tuesday, June 2, 2020 -- Mattie died 557 weeks ago today.

Tonight's picture was taken in May of 2002. Mattie was a month old. Ironically Mattie was napping here. Which was something he rarely did. Or let's put it this way, as a newborn, he may have napped, but that ended very quickly. I remember new parents telling me about how much they got done during two hour naps. I always was in amazement, because it could take me two hours to try to calm Mattie down enough to nap. Then if he napped it was like 20 minutes at a time. Mattie somehow knew that his time with us would be fleeting, so therefore he wasn't going to spend it napping. 


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,831,730
• number of people who died from the virus: 106,180

Today was a day for the books. I felt like I was on the phone most of the day. Talking to doctors and nurses in California, who are overseeing my dad's care. It is very hard managing someone's medical treatment from afar, and even worse during a Pandemic. My mom is not allowed to visit my dad in the hospital, and therefore there is no family member with eyes on my dad. One thing I know, is every patient needs a family advocate. Without it, lots of things slip through the cracks in a hospital system. 

So far, every nurse my dad was assigned has been absolutely delightful! Professional, efficient, and also caring. They are spending a lot of time talking to me on the phone and don't mind multiple calls and questions throughout the day. Peter and I know that having a good nurse can make all the difference in the world, as it is these professionals who provide on the ground care. If you want to know how a patient is, all you have to do is ask a bedside nurse. They are much more clued in than the doctors. 

I found out that my dad was scheduled to be discharged this afternoon. So I called to talk with his nurse to find out how he was doing. The nurse told us that my dad was put on oxygen today because his oxygenation level fell. They did an x-ray of my dad's lungs and they are fine. So the thinking is they have over hydrated him with IV fluid and this could explain the swollen hands, wrists, and fingers. Not to mention the drop in oxygenation. So my dad was dealing with that, then they removed his catheter and were waiting to see if he could urinate on his own. Then the nurse told us that my dad is very weak. Weak for many reasons.... his age, having a UTI for most likely a few weeks, and then having to have emergency kidney stone removal. Needless to say, my dad is too weak to truly walk and function independently. 

Naturally the question begs itself... how could they want to discharge my dad in this state!!!??? Make a long story short, by the time I called several people and lit up the hospital, my dad was not discharged today. In fact, the chief of rehab is coming to assess my dad tomorrow to determine the discharge plan. My hope is that he will transfer my dad to the rehab floor of the hospital, to help my dad regain his strength and ability to do activities, so that he can return home safely. 

I am saddened that my dad's hospital doesn't have a patient advocacy division. Patient advocates are lifesavers and serve as liaisons between patients/families and health care providers. All I know is whenever we had a problem at Mattie's hospital, I called our patient advocate. When she walked onto our pediatric floor, hospital staff would be jumping. Unfortunately there are no advocates to turn to at this California hospital. However, I landed up talking to the charge nurse of my dad's hospital unit. She was wonderful, and reminded me of Mattie's sedation nurse! Even sounded like her. She actually read me doctor, nurse, and physical therapist notes placed in my dad's file today. She was unbelievably helpful and hearing this information allowed me to determine who I need to speak to tomorrow regarding getting a rehab plan for my dad. 

Monday, June 1, 2020

Monday, June 1, 2020

Tonight's picture was taken in June of 2002. Mattie was a month old. Peter was giving him a bottle on our deck. We used to love looking at Mattie's dreamy face when having a bottle. He seemed so relaxed and in a zen place. 





Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,804,206
• number of people who died from the virus: 104,799

I ventured out to the dentist office today because I needed crowns on my teeth. I had root canals in February, but because of COVID, I wasn't able to finish the process by getting crowns. One of my teeth has a fracture and my endodontist told my dentist that my need for a crown was an emergency. Which is how I got an appointment today. It is hard enough managing day to day lock down from COVID, but now our cities are being over ridden by crime due to the protesting of George Floyd's death. In fact, I had Peter drive me to the dentist and pick me up because neither of us felt it was safe to walk alone. What is happening to our city, or cities? Again, tonight law abiding citizens are facing another curfew at 7pm (in DC). Our freedoms are taken away, but those who want to inflict rioting, pain, and chaos are allowed to roam freely and in crowds of hundreds. So much for the COVID threat! I guess it only applies to those of us who actually follow the mandates of our cities. I snapped some photos of what is happening in DC. The photos to me are vial! I get what it is like to lose someone tragically. But violence is never the answer or the solution. It disgraces the memory of those who suffered and died. 

Graffiti on the World War II memorial, one of my favorite memorials on the National Mall. Memorials are meaningful and should be considered sacred. Violating such a memorial tells me that the rioters have no respect at all for those men and women who fought for our freedoms. 

Graffiti on the Lincoln Memorial! I absolutely detest graffiti of all kinds. I don't find it artistic or a form of expression. Which is why I constantly report graffiti in DC so that it can get removed. However, defacing the Lincoln Memorial makes me sad, mad, and disgusted. 

St. John's Episcopal Church is more than 200 years old and sits near the White House. The church is a National Historic Landmark known as the "Church of the Presidents" as every president since James Madison has attended a service at St. John's. The church was not only vandalized but set on fire. 

Along my journey to the dentist today. Windows were either broken or graffiti was on them. 

 This is the beautiful St. Regis Hotel. Filled with graffiti!

The even boarded up the hotel to prevent the windows from being broken. 

A Starbuck's boarded up.

Graffiti everywhere. 

Right outside my dentist's office. I find all of this very offensive and frankly I think these actions insight anger on all peaceful citizens. If each of us took violent action every time we had been wronged or treated unfairly, we wouldn't have a society. We would have chaos, non-stop violence, and the freedoms we have come to appreciate would disappear.  

I end tonight on a more positive note. When I got back from the dentist, this was my sighting. Indie was on our kitchen counter. Something she knows I do not like. But when she hears a bird, you just can't stop her! She is very bird centric. 

Sunday, May 31, 2020

Sunday, May 31, 2020

Tonight's picture was taken in May of 2002. Mattie was a month old, and I remember back then I was taking several photos of him a day, as I was looking to capture the "perfect" photo for a birth announcement. I did not select this photo, but what I do love about this one, was it illustrated Mattie's alertness and  curiosity.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people who were diagnosed with the virus: 1,786,030
• number of people who died from the virus: 104,232

Tomorrow will be June 1, and believe it or not, my closet is still featuring winter clothes. With being locked down with the Coronavirus, I literally never wore most of my winter clothes this year. My daily attire consisted of leggings and sweat suit material things. Not unlike my year when Mattie had cancer and we were living in the hospital. But with warmer weather, I needed the time to switch my closet over to spring. While I did that today, Peter took Sunny out for a walk on the National Mall. 

Peter sent me some photos of Sunny! Given Sunny's age and fur coat, we have to take water and his travel bowl with us on walks. With the heat, Sunny needs periodic breaks to catch his breath. 

Look at my regal boy on the Mall!

As of this week, Sunny will be 8 weeks post-surgery. Today is the first time I saw Sunny's spark really return. He looked happy to be out and about and had good energy on our walks today. 

Meanwhile, here is Indie! Indie likes to take over Sunny's bed on occasion. When Sunny isn't happy with her, he will walk over to one of her cat beds, grab it in his mouth and throw it on the floor. These two keep us entertained. 



My friend's daughter graduated from MIT on Friday. I did tune into the university's virtual graduation, but I missed the actual graduation speaker. I had the opportunity to read the speech today and I included the link below. Typically graduation speeches are out of touch, can be boring, and some can be down right inappropriate. But this one truly resonated with me, which is why I posted the link below. 

MIT did a phenomenal job getting Admiral McRaven. In his speech, he defines a hero!!! I couldn't agree more and his points about courage, humility (as life always brings us down a peg or two), compassion, sacrifice, and integrity! I specifically love his insights on moral character/courage and HOW THERE IS NO work and life balance..... especially if you want to succeed and achieve something of importance. His speech resonated with me and I think this is a message that every teen and young adult needs to hear. All the valuable human qualities he highlights are what creates a person of character, a real hero. 

His ending was equally powerful, for what is happening with COVID-19 can never happen again in our country. We have to learn from this, because the long term mental health, physical, and economic consequences will far exceed the virus itself.

Retired Navy SEAL commander who led the Osama bin Laden raid tells MIT 2020 graduates: "To save the world, you will have to be men and women of great integrity."

https://www.businessinsider.com/william-mcraven-mit-navy-seal-commencement-speech-2020-5