Tuesday, November 24, 2020

Tuesday, November 24, 2020 -- Mattie died 582 weeks ago today. 

Tonight's picture was taken on November 21, 2008. Mattie was playing on my computer with his left leg! Why? Because all his other limbs were operated on and wrapped up! Nonetheless, "Curious George," the name we gave Mattie's left leg, became quite skilled. Mattie's foot and toes were as good as a hand and fingers!

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

• number of people diagnosed with the virus: 12,589,221
• number of people who died from the virus: 259,874

Sharing some photos from Boston. Peter sent me several today, as Sunny is having a wonderful adventure. He loves his outdoor time and daily walks in the woods. You can see how alert Sunny is with his ears perked up and his tail raised high. 

Look who took over the couch! Sunny is an emotional beast and he knows how to ingratiate himself with his hosts. 

Even Indie is getting in the act. Typically she is a very shy and anxious cat when we aren't at home. But since she has visited Peter's parents a couple of times, she is now exploring the house. 

My mom's birthday is on Thanksgiving. Today we surprised her with flowers for our Thanksgiving table. 

Because I am balancing a lot here on any given day, I have decided to prep a Thanksgiving dish on Monday, Tuesday, and Wednesday. Hopefully making Thursday more manageable. Yesterday I prepped stuffing.

Tonight I prepped a sweet potato soufflé. 

It was a typical busy day in paradise! The new wound care specialist visited this morning. She was a night and day difference from the previous horror show. Today's specialist was knowledgeable, open to questions and felt that a less aggressive treatment approach could be taken given my dad's progress. The last specialist debrided my dad's pressure sores twice a week. It involved thoroughly cleaning the wound and removing all thickened skin, infected, and dead tissue, foreign debris, and residual material from dressings. That may not sound bad, but it involved invasive scraping and causing my dad's back to bleed. 

The other nightmare was a laundry room flood. Try over two inches high of water. I literally thought I was going to lose it! Mind you I have had a plumber come to fix the washing machine five times. Just when we think the problem is solved it gets worse. There is absolutely NO peace here. 

Meanwhile, tomorrow will be the LAST day we can go out for lunch. All outdoor dining will be closed in LA County starting at 10pm on Wednesday. My parents go daily to the same restaurant about five minutes from their home. Given that they are frequent flyers there, everyone in the restaurant knows them. It is like going to Cheers. Which is great stimulation for my dad, not to mention it is the reason he has gained weight and his health is improving. Today we spoke to the owner of this neighborhood restaurant. He is devastated by LA County's mandate for restaurants to close in-person dining. He told us he employees 16 people and many of his servers were in tears today as they do not know how they will be able to support their families. I honestly do not know how LA will be able to make it with this continued level of lockdowns. 

This neighborhood restaurant was packed today. Every allowed outdoor table was filled, and as diners left, new ones came. It was like people know change was coming and they were spending every possible moment out and about. What a horrific commentary. Yet all the servers and the restaurant owner were working very hard today, trying to make their diners feel special, cared for, and appreciated. Which to me was noteworthy, given the pending lockdown and impact on their livelihood. This restaurant is important to me because the staff really do look after my parents when I am not here. They meet their every dining need and they also make sure my parents get a table as quickly as possible. These folks will be missed and my concerns now begin as I worry...... will my dad eat at home now that we return to lockdowns?

Monday, November 23, 2020

Monday, November 23, 2020

Tonight's picture was taken on November 21, 2008. It was around 8 days after Mattie's second limb salvaging surgery. Based on the activity in this photo, I know it had to be a Friday! On Friday, the University's chemistry club came to the pediatric units to do fun experiments with the kids. This was something Mattie LOVED. So much so, that if Mattie couldn't go to the playroom, the club came to Mattie! 

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

• number of people diagnosed with the virus: 12,395,660
• number of people who died from the virus: 257,549

Just when you think it will be a more manageable day! Forget it. I can't quite explain why each day is filled with stress and chaos, but it is. As usual, I was up at 5:30am. I need to get up this early in order to get showered, dressed, and start breakfast and chores before my dad's caregiver arrives at 8am. At 7am, I was in my parent's garage looking for a leaf for their dining room table. Who knew a table leaf could weigh a ton. 

Overall, it was like a three ring circus in their house today. From 8am to 1pm, I managed the caregiver, the manicurist who cares for my parents nails, the plumber fixing a leak, phone calls with doctor offices (GI, cardiology, dentist), followed by a dialogue with the wound care company. On Thursday of last week I fired my dad's wound care specialist, as he was very unprofessional and I think also incompetent. They have now assigned a new specialist to care for my dad starting tomorrow. Given the last specialist, I gave it to this company, as I think there is a real lack of training and oversight and I told them I wanted the A team now. In addition, I said this company is getting one more chance, and then I am moving onto another wound care company if tomorrow's specialist is equally awful. It speaks volumes to me that they hire such questionable professionals. 

After that I dealt with paperwork, orders my mom wanted to complete, a stolen credit card, and took my parent's to lunch. At lunch my dad had to go to the bathroom, so I accompanied him and went right inside the bathroom with him as he truly needs a lot of assistance. Are you getting the picture for my day?! I am worn out and I am much younger than my mom. It is very understandable why she is burning out. 

Also my parent's garbage container is broken and I have been trying to get through LA County Department of Water and Power! Good luck. The most user unfriendly phone number and forget the website. I created a login and password and then couldn't get into the system with these credentials. I just want a NEW bin, and I am expending a great deal of energy with this request. If this was the only thing I was balancing, it wouldn't be so bad. But my patience is dwindling. 

Then LA County announced that it is CLOSING outdoor dining starting 10pm on Wednesday. That may not sound bad, but for my dad this is like a life sentence. In fact, I blame lockdowns for my dad's significant decline in physical and cognitive health. Things are hard enough, but now I have to worry about the break in ROUTINE and my dad potentially refusing food at home. I have reached the end of my rope with the virus and how our officials are managing it. Of course their mandates apply to us but NOT to them. I am fed up and frankly if Los Angeles keeps it up, the crisis will be much more significant than the virus itself. 

Sunday, November 22, 2020

Sunday, November 22, 2020

Tonight's picture was taken on November 19, 2008. It was six days after Mattie's major limb salvaging surgery. By that point, respiratory therapists were on the scene and worried that fluid would start collecting in Mattie's lungs. Mainly because he was unable to move and work the fluid out naturally. So at that point, we tried fun activities, like using crazy straws to get Mattie sucking in and blowing out! However, Mattie approached requests cautiously! Which was why I always did them first. You can see that Mattie was watching me as I was wearing this crazy straw that wrapped around my head and formed green straw glasses on my face. 

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

• number of people diagnosed with the virus: 12,224,322
• number of people who died from the virus: 256,741

Do you find this photo as funny as I do? Peter sent me this photo of Sunny tonight eating of all things...... asparagus. A first. Sunny is usually a protein dog! I frankly don't know what is funnier, the fact that he is eating a vegetable or his adorable eyes checking out the asparagus. Sunny is close to 70 pounds, but he is a gentle giant. For a larger size dog, I am always amazed with how gingerly he takes food from a human's hands! 

Since I have gotten to Los Angeles, I have been getting up each morning at 5:30am. That may not sound like a big deal, unless you know me. I am NOT a morning person. The first day or so that I was here, I figured I was getting up so early because of the time difference. After all, 5:30am LA time is 8:30am East coast time. 

Now I realize my issue isn't time zone related. I think it is simply stress. I am afraid that my alarm will go off in the morning and wake up my mom who is in the guest room, right next to my room. So subconsciously, I am waking up periodically during the night to check the time (like 2am, 4am, and then 5am), and I have managed each morning to wake up before my alarm goes off. 

During the summer (June and August) when I came to Los Angeles, my focus was helping my dad. Now I am trying to help both my dad and my mom. Specifically trying to give my mom time to sleep longer in the morning, in order to regain her strength. My dad was hospitalized both in May and June. Between these hospitalizations and COVID lockdowns, his dementia went from the early to late stages of the disease. It has truly been unsettling to think that cognitive decline can happen overnight. I must admit that I held out hopes that my dad would bounce back to how he was functioning in May with time, better nutrition, family support and care. Unfortunately this hasn't happened and the reality has hit all of us. The mentally active and engaging person we once knew is no longer. Certainly he has moments or snippets of time during the day where he is more engaged and intact, but it doesn't last long. 

I have a long fuse and a great deal of patience, however, the latest battle is the cell phone. My dad has a phone, yet keeping track of his phone is a nightmare. He typically keeps the phone in his pants pocket, but at times he does set it down and then panics..... where is the phone? In fact, he is in such a panic about the phone that you can visually see him searching his pockets and surroundings for his phone every five minutes. Literally today he asked me 20 times about where his phone was? I answered it calmly 20 times, but by the 21st time, I was on the edge. Mainly because he asked me less than five minutes before the exact same question. 

There are things that have stabilized such as his eating and his irritable bowl syndrome. I celebrate all wins, and am happy that he appears to have a good appetite and isn't having stomach pains, that lead to explosive bouts of diarrhea. Which truly gave my dad and my MOM no quality of life. However, my days are VERY full here, as I move from one chore to the next and at times I feel like a 911 operator, dealing with one crisis after the other. 

Saturday, November 21, 2020

Saturday, November 21, 2020

Tonight's picture was taken on November 18, 2008. This was 5 days after Mattie's major limb salvaging surgery. As you can see, he was still wrapped up like a mummy, but he was more alert and pain was better managed by that point. But that was only after A LOT of advocating and sometimes screaming on our behalf! Despite the pain, undergoing a significant surgery, managing life with cancer, and being isolated in a hospital room..... Mattie's spirit still came shining through!

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

• number of people diagnosed with the virus: 12,059,686
• number of people who died from the virus: 255,800

What a difference a day makes. Not to mention rescue migraine medication. I was an absolute mess yesterday afternoon and evening. I couldn't function or SIT STILL. I felt miserable, as if I were going to jump out of my skin. My head was pounding, and the nausea was intense. 

Peter sent me some photos on his drive to Boston to visit his parents. Of Sunny and Indie were in tow. 

The glorious GW Bridge!

Sunny loves backyard time. It is like going to summer camp. As you can see Sunny was glued to the door, checking out the backyard. Next to Sunny is OC, the cat. Though it is OC's home, he tolerates Sunny. Sunny is used to cats and knows not to make any sudden or aggressive movements.

Sunny loves being outdoors! When we take Sunny to Boston, we bring a LONG leash with us. This enables Sunny to walk around and check things out without getting into trouble. 

Sunny is very focused on the movement in the backyard. Chipmunks and squirrels always catch his undivided attention. 

Today I went grocery shopping for Thanksgiving. My dad likes getting the turkey from Gelson's. Gelson's is a very unique and extraordinary grocery store. It has special items like what one would find at Whole Foods, yet you can also find every day brand named items in the store. So unlike with Whole Foods, you can do ALL your shopping at Gelson's. What makes Gelson's a beautiful shopping experience though are the well trained, customer focused staff members! At Gelson's the customer is always right, and they work very hard at getting their shoppers happy. I love food, and it is clear who ever manages this store, appreciates food and wants to make the store a visually pleasing experience. It doesn't disappoint. 

I went to high school in California. Just down the street from Gelson's. So Gelson's is NOT new to me. I remember my maternal grandmother LOVED Gelson's and I would take her shopping there on occasion. 

In reality I was dreading going shopping today because I was expecting anxious and pushy shoppers around me preparing for Thanksgiving. I found the exact opposite. I attribute this to a well run staff who keep shelves stocked, well organized and NO one waits at check out. If a line develops, more checkers appear instantly to help customers. Why aren't all grocery stores like Gelson's!???

Gelson's has it all! From an amazing butchery to a delectable bakery. Because my parent's moved into their house in June, I admit that I am not familiar with the size of their refrigerator or their oven. Both of which are smaller than their past appliances. 

It was productive day and I got a lot done. It most definitely helps that my dad has a caregiver for four hours each day. It frees me up to run chores and get tasks done. 

Friday, November 20, 2020

Friday, November 20, 2020

Tonight's picture was taken on November 13, 2008. It was the day after Mattie's second big limb salvaging surgery. During that 12+ hour surgery, Mattie's left arm, right leg, and left wrist were operated on. Prosthetics placed in two places and a bone graft at the wrist. What Mattie's surgeries proved to me was that the surgery was the easy part. The hard part was the aftermath! Trying to manage pain and to eventually regain strength and abilities were where the heroic feat came into play. This photo may look peaceful. But I assure you the room was anything BUT peaceful. Mattie was coping with tremendous pain, he was hooked up to IVs and had drains coming out of each operated limb. Making it thoroughly impossible to move and get comfortable. 

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

• number of people diagnosed with the virus: 11,895,876
• number of people who died from the virus: 254,297

I developed a HORRIBLE migraine this afternoon, so I unable to truly look at the computer screen and write much tonight. So this will be short. I got up this morning at 5:30am and ran one chore after the other, just to find a flood going on in my parent's laundry room. There just is NO break with this house. It is hard enough balancing this schedule, but it is close to impossible with a horrific migraine. I am hoping that this feeling passes in 24 hours, as I can work through headaches, but not this level of debilitating symptoms. 

Thursday, November 19, 2020

Thursday, November 19, 2020

Tonight's picture was taken on November 12, 2008. It had to be around 5am, and we were in the pre-op area waiting for Mattie to be taken back for his second limb salvaging surgery. That was quite the day! Imagine such a little body undergoing 12 hour surgery. In any case, we were all stressed out and anxious that morning, yet we tried the best that we could to keep Mattie calm, and to reassure him we were in this together. 

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

• number of people diagnosed with the virus: 11,698,661
• number of people who died from the virus: 252,419

Look who has taken over my side of the bed!!! Sunny and Indie!

In case Peter is lonely, Sunny is on the job. 

My dad had physical therapy today. One of the exercises Jon did with my dad, was walking with a cane up their street. If you look closer, you will notice 3 pound weighs around my dad's ankles. Jon is doing this to help my dad build up muscle. It took 10 minutes for my dad to walk up the street and 10 more minutes to walk back down. My dad had an entourage with him, as my mom, me, and Claudia (his caregiver) were behind him. We had a wheelchair in tow, just in case my dad did not have the energy to make it back. 

Before I came to LA, we purchased an aeromattress for my mom. I set it up in their guest room yesterday. While I am here, I want my mom to stay in the guest room, so that she can sleep without worrying about getting up with my dad and can sleep later in the morning. I am here and can manage caregivers and other issues that arise in the morning. My mom looks more rested this morning. So I do think two weeks of getting sleep will do a world of wonders for her. 

Meanwhile, I met my dad's wound care specialist today. Wound specialists are health care professionals who have been trained in the care and treatment of all types of wounds, acute and chronic. Among the most commonly treated wounds are those sustained from an acute injury, surgical wounds, diabetic wounds and pressure sores. This is the third specialist assigned to my dad. We lost his first two because of patient demand and timing did not work out for us. So we were assigned Ken (Ken is NOT his real name, I won't use his real name for the blog).

In May, my dad developed a pressure sore on the lower part of his spine. We were told by the first wound care specialist that my dad got this sore from being sedentary during COVID and being malnourished (as my dad refused to eat while in lock down at home). Though my parents have been working with Ken for a couple of weeks, it was my first introduction to him today! To cut to the chase, it was NOT a good meeting and while he was working with my dad, I picked up my cell phone and called the in-home health care agency. On the spot I fired the wound care specialist. I demanded a replacement effective immediately. He was that bad! I did not need anymore time to assess him, his personality, or his poor skills. Turns out that my mom hasn't liked working with this specialist, and she said his behavior today was typical of how his overall delivery of care.

When incensed, I write. I wrote an email to the wound care company, because I felt their management needed to hear directly from the patient's family! Below is my message, and it is my hope you can understand why Ken's treatment was not satisfactory!

MY LETTER:

My dad is a client of T. Home Care. He has been dealing with a wound on his lower spine since May. Recently, my dad was assigned to work with Ken, a wound care specialist from your company. I live out of town, so today was the first time I met Ken personally. I introduced myself to Ken and I could tell right away this was not going to be a good visit. Given our experience with Ken, not just today, but from feedback I received from my mom, I called T. Home Care and asked that Ken NOT return. I have asked for my dad to be reassigned a new specialist immediately. 

Here are some of our experiences today that caused the decision to request a new wound care specialist:

1. When Ken arrived, I introduced myself to him, as Mauro Sardi's daughter. He did not say hello or make any effort to communicate with me. 
2. Ken also made no effort to greet my mom, my dad's full-time caregiver. It was clear that Ken doesn't value family input and doesn't consider us part of the treatment team. Which is a BIG mistake, as family caregivers know the patient better than anyone else. 
3. After I greeted Ken, he turned his back to me, and instead started talking to my dad's professional caregiver. Ken apparently lost a blue bag of his and wanted to know if he left it at my parent's house. Since our caregiver doesn't live in my parent's home, it would have made more sense to inquire about the bag from my mom or me. 
4. The bigger issue arose when I started asking Ken about my dad's back wound. He wasn't forth coming with any responses.
5. When I saw the wound for myself (after Ken removed the bandage), I was stunned to see NO progress in healing. I last saw it in person in August, but my dad's caregivers send me photos weekly. Under Ken's care, I feel that my dad has made little to no progress. In fact, the wound looks worse. When I expressed my feelings with Ken, he basically said I was wrong and that I am not around enough to make this determination. Which is very insulting, given the efforts I do make to ensure my dad is getting the best quality of care possible. 

I appreciate the opportunity to share this feedback with you and I am telling you this because I do not want other patients and families to experience with Ken what we did today. Much thanks, Victoria

Wednesday, November 18, 2020

Wednesday, November 18, 2020

Tonight's picture was taken on November 10, 2008. Mattie was in the outpatient clinic and as you can see he had worked on the computer there and was printing off images of roaches. Why? Well Mattie was into bugs of all kinds and he particularly loved seeing me freak out over the discussion or photographs of roaches. Ironically, Mattie claimed to love roaches, but he never saw one in real life. Nonetheless, whatever got Mattie excited, happy, and laughing, I supported! Also notice that on top of Mattie's hat was a model magic roach that he created! That roach is still on display in Mattie's bedroom. 

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

• number of people diagnosed with the virus: 11,517,455
• number of people who died from the virus: 250,426

My boy is NOT happy that I left this morning. As you can see, Sunny jumped on the bed and remained on my side for a chunk of the day. Doesn't he look depressed?

On my flight today was a couple with their new puppy, a Westie, named Sky. Sky was a good girl and managed the 5.5 hour flight! 

I can't recall the last time I was on such a smooth flight! I mean no turbulence at all. It was thoroughly pleasant to sit still for this time, read a book, and prepare for my trip ahead. 

My view as we were flying into Los Angeles! 

We arrived an hour early! This is a typical sight in LA in the morning, overcast and grey. I left upper 30 degree weather and enjoyed sun and 70 degree temperatures in Los Angeles. Needless to say, I got up at 4am to catch my 7am flight and when I got to LA, I have been working non-stop. My dad claims to be getting stronger, but what I have concluded is we have different definitions of stronger. Stronger to me means becoming more independent. The sad part is this is not going to happen, and it is an adjustment and loss for me and my mom. In fact my dad doesn't remember living independently back in May! He thinks it was a much longer time ago. 

Peter received a surprise in the mail today!

Congratulations Peter!

Tuesday, November 17, 2020

Tuesday, November 17, 2020 -- Mattie died 581 weeks ago today.

Tonight's picture was taken in November of 2003. Mattie and I were in the kitchen dancing. Peter came in and snapped a photo of us in action. Got to love the big smile on Mattie's face! One thing was for sure about Mattie.... he loved music and movement right from the beginning. 

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

• number of people diagnosed with the virus: 11,299,730
• number of people who died from the virus: 248,027

Pictured here are Katie (Child Life Coordinator) and Christine (Hospital Educator). Both of these women work at MedStar Georgetown University Hospital. Mattie Miracle made a donation of candy and snack items, items which will keep our FREE snack and item carts stocked! 

Behind Katie and Christine is a sight I will never forget. These buildings belong to the medical school, and many a day, I wheeled Mattie around them and the garden just to get some fresh air from the hospital unit. It seems ironic, that even a picture of this outdoor space can transport me back in time.   

Even during a Pandemic, I would say that our supporters really stepped up once again to help us. In December, we will be making a delivery to Children's Hospital at Sinai in Baltimore. We have an equivalent size of items to donate. 

Occasionally it is good to reflect on where the Foundation was and where it is today! A great way to do this is reading our newsletters. This is what our January 2014 Newsletter looked like! Besides content, the whole layout of the newsletter was more simplistic. 

Meanwhile, our November 2020 Newsletter came out this week. This is, I believe, the fourth format we developed for our Newsletter templates. Though I complained about having to develop a new template two months ago (because the company we use migrated platforms), I think the new style is crisp, much easier to read, and definitely highlights our activities and achievements. 

Monday, November 16, 2020

Monday, November 16, 2020

Tonight's picture was taken in November of 2005. That weekend we took Mattie to the National Geographic Museum. Ironically that was my first and last visit to that Museum. For no reason, other than it was a museum and adventure that reminded me of Mattie. Outside the Museum are wonderful bronze animal sculptures. As you see Mattie liked this ape! It still is one of my favorite photos. I can remember snapping this photo and trying to capture Mattie's big smile on camera.  

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

• number of people diagnosed with the virus: 11,163,990
• number of people who died from the virus: 246,953

It was a busy day today. With one chore or task after the other. I am leaving for Los Angeles on Wednesday, and desperately trying to get work done. Midday, I took a break, and Sunny was thrilled to walk Roosevelt Island with me. I could walk Sunny near my home in DC, but frankly, the state of the city causes me to want to LEAVE and seek a retreat. The Island provides that for me. 

It was a lovely weather day and the deer were out all over the Island. I feel like I see these deer so often, that they should be used to us. 

Do you see the deer in the brush? This one was walking across the water during low tide to get from one side of the Island to another. This deer caught the attention of many humans on the boardwalk today. 

This duo I see often. Mom and baby! Do you see them? Mom is on the right and baby on the left!

Sunday, November 15, 2020

Sunday, November 15, 2020

Tonight's picture was taken in November of 2005. Mattie was three years old and that weekend we took him to Great Falls Park. Mattie loved all outdoor adventures and got me in the habit of taking long walks on the weekend. I think Mattie would have loved meeting Sunny, because they share their love for walking and the outdoors. 

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

• number of people diagnosed with the virus: 11,000,984
• number of people who died from the virus: 246,006

Yesterday we went through all the candy and snack items that were donated to the Foundation. The majority of snacks were shipped to us from our Amazon wish list and the majority of candy was dropped off at our location in Arlington, VA. For the most part all the candy we received was in its requested unopened vacuum sealed bags. We did receive some loose candy and it is being donated to shelters and other non-profits. 

This stack of bins will be headed to Children's Hospital at Sinai in Baltimore, MD in December. 

This stack of boxes are all the snacks going to Children's Hospital at Sinai. Our supporters were SUPER generous with snacks this year. We received all sorts of goodies: oatmeal, chips, popcorn, cookies, nuts, granola bars, k-cups of coffee!

This is the other half of the supply we received. We stuffed it into our friend's minivan. Which is filled from floor to ceiling! All of this will be delivered to MedStar Georgetown University Hospital on Tuesday! Georgetown will be receiving several bins filled with candy and the rest are boxes upon boxes of snacks!

All these donations will help stock our free snack and item carts at two hospitals. These carts serve over 1,500 families a year! The items on the carts help meet the daily needs of families who are caring around the clock for a child with cancer or other life threatening illness. When in the hospital, it is hard for parents to leave their child's bedside to meet their own basic needs. The carts serve this important psychosocial role.