Friday, June 12, 2020

Friday, June 12, 2020

Tonight's picture was taken in August of 2006. Mattie was at Legoland in San Diego. I would have to say that it was one of his favorite theme parks. As Mattie was the "king of the Legos." He loved them before and during cancer and Legos became a therapeutic tool for our entire family. As we would focus on building the Lego structure together, which enabled us to take a break from focusing on cancer. In this photo, Mattie posed right near Diego, the character from Dora the Explorer. A favorite TV show of Mattie's.


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

• number of people who were diagnosed with the virus: 2,048,986
• number of people who died from the virus: 114,669

Today is day four of our time in Los Angeles. I just can't get over what we have accomplished in such a short period of time. My dad was visited by an occupational therapist for an evaluation this morning. One would think that when a professional comes over that this would free us up to do other things. But in all actuality, this is far from the reality. Each visitor needs to interact with us, to get accurate information and then also to teach us strategies to work with my dad. So though the therapy is meant for my dad, it can't be effective unless we participate. Something I learned from Mattie first hand. 

But literally my day starts at 6:30am, so that I can get up, showered, and dressed before waking my dad up. We then get him up, help him to the bathroom and get him dressed and downstairs for breakfast. When that is done, sure enough a therapist of nurse arrives. In between, I am on the phone and trying to get information about products my dad needs and I am getting an education on long term care insurance and how it works and what services it will cover. 

Seeing a loved one change and be transformed before your eyes is hard, but keep in mind on top of this my parents are moving out of their house next Thursday. I am on overload and there would be no way I could manage this without Peter's assistance. Peter and I have been packing up their house for several days now, and after we pack things up, we take them to the new house and begin unpacking and setting up the space. My most productive hours to manage their move starts at 3pm, when my dad settles down in his easy chair to rest for a few hours until we get back and then we all sit and chat and watch TV together. 

By the time I sit down to write these blogs at night, I am absolutely spent and I am not sure I have the energy to string two words together. But the blog is my commitment to Mattie and very little would prevent me honoring our connection. 

Thursday, June 11, 2020

Thursday, June 11, 2020

Tonight's picture was taken in August of 2006. Mattie was four years old and enjoying a trip to San Diego. Mattie absolutely LOVED Legoland and could spend an entire day there exploring Legos and all the rides. Unlike me and my family, Mattie loved roller coasters. He was all about the adventure and fortunately Peter had no problem joining in the fun. 


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

• number of people diagnosed with the virus: 2,023,347
• number of people who died from the virus: 113,820

We arrived in Los Angeles on Tuesday morning. My dad has been sleeping in his chair since he was discharged from the hospital on June 3. For the two nights that we were here, Peter slept downstairs on the couch, so that my mom could get rest in her own bed. 

I took a photo of my dad with his physical therapist, Jon, today. Jon spotted my dad as he went up the stairs for the first time today! It was quite a sight to see and my dad was thrilled with the prospect of sleeping in his own bed tonight. 

My dad walked up the stairs. Jon had him walk to his bedroom and wanted to see him get in and out of bed. After that, he had my dad walk to the bathroom, and then back to the bedroom to get in and out of bed again. It was a lot of walking for my dad. 

But it did not end there. He then did strength building and balance exercises with my dad!

I took photos of every exercise, so that we could do them each day! 

There were six different exercises, and I would say the whole session was 60 minutes. Prior to Jon's visit, we had the visiting nurse come in and check my dad's vitals and to do an assessment. My dad's blood pressure, sugar levels and oxygenation are all normal and stable. So he got an excellent report today, on top of which we are finding that he is becoming more lucid and less confused and disoriented. 

I am quite convinced that my dad experienced delirium. It was a very frightening and disheartening set of symptoms (restlessness, agitation, exhaustion, withdrawn, quiet, and in a mental fog) that came on suddenly and the fear was that things would always be this way. 

On Friday, we meet my dad's occupational therapist for the first time. It is hard balancing the host of people who come over during the week and for the most part, I tell them they have to come in the morning, because as the day wears on, my dad gets too tired to participate. 

My days start around 6:30am, in which I get up, and get myself dressed and ready to go. Then by 8am, I make sure my dad gets up. I help him change into clean clothes and then we have breakfast. I am finding having structure to his day helps him and it aiding in his physical and mental recovery. Basically we keep him up, engaged, and moving to some extent until 3pm. At that point, he relaxes in his chair, and then I can focus on packing things up for my parents to help make their move from one house into another next week go more smoothly. Fortunately Peter is with me for this move, so I can focus on energy on my parents. 

Wednesday, June 10, 2020

Wednesday, June 10, 2020

Tonight's picture was taken in August of 2007. Mattie was visiting my parents in Los Angeles and that day we took him to the La Brea Tar Pits. A place he absolutely LOVED to visit. The Tar Pits has a wonderful museum that explains the history of the Tar Pits and showcases many of the prehistoric animal bones found in the tar over the years. In fact there is still an active tar pit that excavators work on to bring life to the many animals buried in these pits. In this photo, you will notice Mattie was trying to cover his nose! That was because the smell of tar is overwhelming at this site. 

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

• number of people diagnosed with the virus: 1,999,900
• number of people who died from the virus: 112,924

It is 9pm, Los Angeles time, and it has been a long day. I did not sleep well or at all last night. I knew Peter was downstairs with my dad and I was worried about him as well. As we had a long and stressful day just trying to fly across the country during COVID-19. 

By 4am, I was up and decided to just get myself ready and start the day. Fortunately I did because I got my dad to eat breakfast, got him completely changed and in fresh clothes, and had a productive morning. Doing all sorts of challenging things like creating healthcare directives. 

Later in the morning, we took my dad to see the doctor. It has been one issue after the other and yet Peter and I are also working hard to pack up my parent's home. We make several runs back and forth to their new home and I am on day 2 and already exhausted. 

Tuesday, June 9, 2020

Tuesday, June 9, 2020 -- Mattie died 558 weeks ago today. 

Tonight's picture was taken in August of 2007. Each August, I would take Mattie to Los Angeles to visit my parents. We knew Mattie needed physical activity and stimulation, so we introduced him to Griffith Park. Ironically, when I was growing up, I never visited this park. But it became a favorite of Mattie's. At the park, he could do everything from taking a train ride, riding horses, to going on an old world carousel. 



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

• number of people diagnosed with the virus: 1,979,850
• number of people who died from the virus: 112,006

I woke up at 4:00am today, so we could catch a 7am flight to Los Angeles. Naturally we had no idea what to expect at the airport or on the plane, given that we are still dealing with the COVID-19 pandemic. There was no passenger screening for temperature checks. For the most part, everyone was masked and keeping their distance. 

When we boarded the plane, I could smell the clorox or bleach, while walking down the jetway. Things smelled clean and we could see that everything was wiped around our seats. Though I came prepared with gloves and disinfectant of my own and cleaned our entire space anyway. But what as also a wonderful surprise was the plane was new. Things looked fresh and clean, which was appreciated. 

In the midst of this, we had a wonderful flight attendant. He even wrote us a note saying how grateful he was that we flew with him today. As our presence enables him to have a job. It was very touching. This fellow couldn't do enough for us and he even brought me hot tea almost every two hours with a special tea bag! I did not ask for it, he was just that kind. 

When we landed, we managed our way to the rental car agency and picked up a minivan to help with my parent's move. From there, we went grocery shopping and then headed to my parent's house. Los Angeles is now in phase 3, which means more freedom than Washington, DC. We took my parents out to lunch today, the first time they have been outside in months. Our goal was to change the setting, to try to inspire my dad to eat. 

I would say that my dad got around today with his walker and really made good strides. He was lucid by day and even did a better job eating. However, as 5pm rolls around, you can see that he becomes exhausted and his confusion and disorientation increase ten fold. He can ask you the same question twenty times and he has no memory of asking the question or of the responses you have been giving him. Yet he gets agitated and fixated for a response. He does things that make no sense. For example, he was released from the hospital a week ago tomorrow. Yet in this 7 day time period he has refused to take his socks and shoes off. He says he is more comfortable with them on! Rest assured, I got them off today!

We had the opportunity to meet my dad's physical therapist today, who is lovely. He agreed with me that my dad needs an occupational therapist and a nurse to help us with his bathing. If all of this wasn't enough to adjust to and manage, let's add a move to the mix. Peter and I are trying to figure out how best to accomplish my parent's move especially since we don't have as much time as we would like to devote to this, because my dad needs our full attention. 

Monday, June 8, 2020

Monday, June 8, 2020

Tonight's picture was taken in June of 2009. That day we took Mattie to a Nationals baseball game. I will never forget that experience, ever! It wasn't positive! I can't tell you how many people stared at Mattie and us. They looked at us like we had the plague and couldn't get far enough away from us. As if childhood cancer was contagious! The one highlight at the park, was a representative from the Army. He was  handing out "Army Strong" shirts to ticket holders. He came over to us and said that he knew Mattie was "Army Strong," and gave Mattie a t-shirt! It was a very kind gesture, in a sea of unkindness. 

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

• number of people diagnosed with the virus: 1,956,499
• number of people who died from the virus: 110,932

Doesn't ask me how Sunny and Indie knew they were going to get boarded today! We did not have Indie's cat cage out and we started our morning just like any other morning. In addition, our luggage wasn't even out! So I don't get it! Though I believe Sunny and Indie are very sensitive animals and they study Peter and me all the time!

We checked in on Sunny this afternoon, and this new facility says Sunny is a love! No surprise to us. Sunny's surgeon did not want him to stay at his usual boarding facility because all the dogs roam freely in a room together. Which could cause Sunny to jump or twist his leg (which was operated on 9 weeks ago). Another issue that many facilities are closed due to COVID-19. Fortunately we found a top notch facility, that has its own pet hospital on-site, that is open. It is open because they are caring for first responders' pets! 

Meanwhile, Peter and I are now packed and ready for our 7am flight to Los Angeles tomorrow. I will be there for three weeks, with the hope of stabilizing my dad and also moving them out of their rental into another rental. Got to love the owner of their current property who wants his house back during a pandemic. I absolutely love his compassion and sensitivity!

Sunday, June 7, 2020

Sunday, June 7, 2020

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from a sternotomy. In which his chest was opened up to remove 9 lung tumors. That evening Mattie's day nurse, Sarah Marshall, and his night nurse, Ellen came in and gave him a kiss on his head. Notice that Mattie did not seem to notice! But don't let that fool you. Mattie was processing everything going on in the room and also multitasking with his coloring book. 

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

• number of people diagnosed with the virus: 1,928,594
• number of people who died from the virus: 110,110

We are now done with all Virtual Walk admin work and are getting ready to board Sunny and Indie tomorrow. As Tuesday, we fly to Los Angeles. This isn't the best time to travel, but given that my parents need help, we are proceeding forward with our arrangements. For those of you just tuning in, my dad was rushed to the hospital on Friday, May 29 at around 10pm. He had fallen for a second time and when the paramedics came, his vitals were anything but stable. My dad did not want to go to the hospital, but the paramedics said they couldn't leave him at home. That he had to go! It was a matter of life or death. 

Naturally with COVID-19, my mom was not able to accompany my dad to the hospital. This alone is a psychosocial stressor for all of us, including my dad. Because my dad was really too sick to understand what was going on and without family oversight, we do not have a good idea for how he was behaving in the hospital. Meaning specifically was he eating and was he disoriented/confused? 

My dad was released from the hospital on June 3, at 5pm. This was contrary to what his family wanted, but he was cleared by all his doctors and his physical therapist. Therefore, we had no recourse to fight this decision. My mom picked up my dad at the hospital and then had a rough transition home with my dad, mainly because my dad needs a lot of assistance. The in-home care services prescribed by his doctor did not show up for two days and even when this nurse came, he only did a basic assessment and offered no help. So you got to love the hospital's decision to release my dad, regardless of whether his home environment was ready and able to assist him! Says a lot about our medical system and health insurers! 

Since June 3, progress has been made. My dad no longer is hiccuping! That's a great milestone and he is now able to get out of chair and take a few steps unassisted by my mom. Another great feat! But the big obstacles are that my dad isn't eating, says he isn't hungry, and he reports being very disoriented. He can be talking to you, and mid-sentence he forgets what we are talking about. He is very aware of his confusion and naturally being cognitively impaired is very scary! But what accounts for this disorientation? Is it temporary or permanent!? A great question and no one seems to know the answer! 

In the midst of all of this going on, my parents also have to move out of the house they are renting. As the owner wants it back! Got to love an owner who has NO heart or compassion, as these are older adults being asked to move during COVID-19 and while my dad is recovering from kidney stone surgery and a bad urinary tract infection. So Peter and I will be working around the clock to help stabilize things and to transition my parents to their new home. 

To prepare to leave for Los Angeles, there is so much we have had to do. Everything from putting together food and treats for Sunny and Indie to creating the framework for 22 days of blogs while I am away. It is hard to leave Sunny, especially as he is still recovering from his own surgery, but we can't balance it all. I know the facility Sunny will be staying at has an on-site hospital if he should need medical attention of any kind and our vet loves Indie. I am told they are all awaiting Miss Indie's arrival! 

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.