Saturday, February 12, 2022

Saturday, February 12, 2022

Tonight's picture was taken in February of 2009. Mattie was admitted to the hospital that day. I can tell because on admission days, Mattie actually wore clothes. Unlike regular hospital days when he was in pajamas (his choice!). That day a former student of mine, Pam, came to visit us while we were in the child life playroom. As you can tell, Mattie wasn't happy. By this point in time, Mattie was very traumatized, and did not like visitors and most definitely did not people pulling my attention away from him. I balanced Mattie's moods every time people came to visit us. Since Mattie was a child, and I knew how important community support was to our existence, I tried very hard to accommodate visits and Mattie's needs. But it was a very, very hard balancing act, that I did not always win. I am saddened that now both people in this photo are death. 

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

• Number of people diagnosed with the virus: 77,701,600
• Number of people who died from the virus: 919,172

We went out for an early dinner tonight to Clyde's of Reston. This restaurant isn't that far from our home. The Clyde's restaurant group has been a part of our family since Mattie went to preschool. Back then, there was a Clyde's up the block from Mattie's school in Alexandria. When my parents would visit from California, after we picked Mattie up from school, we would go for lunch at Clyde's. We were such regulars there, that we got to know the executive chef, Becca. For years, Becca catered the food at Mattie Miracle walks. 

Since we moved to Oakton, VA, the Clyde's at Reston is our closest venue. The beauty of Clyde's is you are going to get a good and consistent product, with wonderful service, and in a lovely atmosphere. Since my parents came to live with us, we are frequent weekly flyers at Clyde's. We have gotten to know many of the wonderful staff at this Clyde's. 

I am beyond stunned that one of our favorite servers today told us that Clyde's of Reston is closing after 31 years of service. Check out this article. The closing has nothing to do with COVID, but I happy to hear that they are designing a whole new venue from the ground up in the Reston area. It will take two years to be developed, but in the mean time, I will truly miss this wonderful spot so close to home.

Friday, February 11, 2022

Friday, February 11, 2022

Tonight's picture was taken by Mattie's art therapist, Jenny. Jenny captured a series of photos that day, as Mattie surprised me with a box full of valentines. Mattie even made me a crown of hearts. As you can see, he placed the crown over my head. Mattie was very proud of his creative accomplishments and he spent hours working on this box in the child life playroom. I was banned from the room that day, until the presentation of the gift..... a moment I will never forget. 

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

• Number of people diagnosed with the virus: 77,552,386
• Number of people who died from the virus: 917,744

My dad's physical therapist came at 10am today. That may sound late in the morning, but around here, getting it together by 10 is close to impossible! I got up at 7am, because I literally am dragging from exhaustion. I got myself showered and dressed, and then I went downstairs to make breakfast. Then I ran back upstairs to get my dad up, showered, and dressed. His irritable bowel issue was over the top today as I was back and forth with him to the bathroom too numerous to count. 

It takes me about an hour to get my dad up, washed, and dressed and downstairs. But then I also have to factor in that he has to have breakfast before the therapist arrives, and potentially use the bathroom again. Literally the therapist was ringing my doorbell, while I was helping my dad out of the bathroom. 

Both of my parents receive physical therapy. However, today my mom was discharged and told that her balance and activity level is above average for her age. She is above average and my dad is below average. It makes for a real challenge when two people have such different abilities. 

The highlight of my day was receiving this wonderful Valentine's surprise from Peter. The flowers are so fragrant and are brightening up our home. Of course FOOD and TREATS are always the way to my heart! 

My dad saw this today and of course wanted to eat all the chocolate and helped himself. 

Meanwhile, I have been worried about Sunny too! If you have been reading the blog, then you know I fell down the staircase and landed on Sunny. In addition, yesterday Sunny chased a fox in our backyard. The combination of things caused him to start limping yesterday. I started him on his anti-inflammatory meds and he seems to be doing better by this afternoon. But of course given his surgery in September of 2021 and April of 2020, I worry about his hind legs. 

Any case, in the midst of all my other tasks, I sat down today to answer emails and to do Foundation correspondence. I am pleased that with all the chaos around me, I am moving head with two initiatives: 1) the M & M Wishes program, in memory of my friend Margy, and 2) I have connected with a social worker in Michigan about funding psychological services for an 8 year old coping with trauma from his cancer treatments. 

Thursday, February 10, 2022

Thursday, February 10, 2022

Tonight's picture was taken in February of 2009. Mattie worked for hours in the child life playroom with his art therapists and then surprised me with a huge box of hand made valentine's, along with a crown of hearts. This was a very tender moment in time, and I am so glad Mattie's therapist caught it on camera. 

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

• Number of people diagnosed with the virus: 77,284,578
• Number of people who died from the virus: 912,549

In my office are two shadow boxes that I created. They are filled with many of Mattie's art pieces. The shadow box on the bottom is comprised of items that were featured in the blog photo above. This shadow box features part of the cardboard box you see above, part of the crown of hearts, and several of the valentine's Mattie made for me that day. For years this valentine's box was preserved in our hallway closet in DC. Nothing was on display. As I was getting ready to move and went through our closets, I transformed the valentine's box into this shadow box, so that I can always remember Valentine's Day 2009!

Today was another crazy day. I got up early, changed the linens on my bed, and began the laundry at 7am. Then got showered, dressed, made breakfast, and a snack for my mom to take the salon in Washington, DC. I got my dad up, showered, and dressed. He had breakfast, and then I sat him in his recliner, so that I could drive my mom to DC. Since Peter was home, I could leave my dad in the house. 

I spent hours in the car today.... driving from Oakton (VA) to Georgetown (DC), then Georgetown to Oakton, and then back to Georgetown to pick up my mom at the salon and then back to Oakton. So that is about three hours of driving. 

While my mom was at the salon, I went grocery shopping, then came home and put everything away. Made lunch for my dad, helped him in the bathroom, folded laundry, and drove back to DC to pick up my mom. I feel absolutely frenetic today. Whatever free moments I had, I spent dealing with doctor offices, my dad's health care company (who sent us health sensitive documents that were NOT ours, they belonged to another client.... a serious HIPPA violation), and our painters (who have to come back to estimate how to fix our cracking moldings). 

I am now going to stop doing tasks, get my sneakers on and walk Sunny. It is the only time I get out of the house and am not doing a task. 

Wednesday, February 9, 2022

Wednesday, February 9, 2022

Tonight's picture was taken in February of 2009. This was the state of our living room back then. It featured Mattie's little Christmas tree (yes even in February), train tracks, a village of Legos and a host of other things. You will notice a drop cloth down on the wood floors, because Mattie was creating Valentine's and other things. Needless to say, when Mattie was in our lives, our living and dining rooms were full to capacity with all sorts of creations and projects. I remember after he died, the stark contrast to our lives was beyond unimaginable, beyond comprehending and surviving. 

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

• Number of people diagnosed with the virus: 77,162,208
• Number of people who died from the virus: 910,716

It's been a day! My dad was very sore today from yesterday's four hour testing procedure. He could hardly move from bed without great assistance. But I got him up, showered, and dressed. He had his occupational therapist visiting this morning, shortly after breakfast. What I truly resent about Medicare is the simple fact that professional home health care services are not covered beyond 6 sessions. Or at least for Part A of Medicare. Frankly by six sessions, you are just getting used to the therapist and progress is being made. But just when progress is made, services are cut off. Leaving the caregiver to either continue the exercises alone or start with another therapist who accepts Medicare Part B. The whole thing makes my head spin, and only adds more to my already FULL plate. 

After my dad's therapist left, my mom had many requests for help regarding address changes, paying bills, and managing insurance issues. I can tell my mom that I want to address these issues only one time a week, but that never works. Instead she gets worked up about mail and any email correspondence and therefore it has to be dealt with instantaneously. Which means I have to drop everything. So I was busy with phone calls and doing four loads of laundry, as today I changed all the linens on their bed. Which is a work out in and of itself. 

My dad's therapist and I would like to wean him off of using so many pillows in bed. He sleeps propped up and in the process, his body isn't used to lying flat. Which has many limitations especially when in a medical facility or in need of a medical procedure and testing. 

Needless to say, poor Sunny never got a walk today. It may have been 55 degrees outside, but I never got outside. My days are occupied with tasks.

As if I don't have enough going on, our painting company is coming back to examine our crown moldings this afternoon. Fortunately Peter snapped photos of the rooms before they were painted in July/August. The house prior to painting did not have these cracks (you see the current problem in these photos). The painting company is fighting with us about this and they are claiming the cracks were there and therefore we have to pay for them to be fixed. 

The cracks are all over the house! Around all the molding. Thankfully I found photos that Peter took which proves my point.... these are not pre-existing cracks. Honestly I just want to scream, as something I thought was done and off my plate has reared its ugly head yet again. 

Tuesday, February 8, 2022

Tuesday, February 8, 2022 -- Mattie died 645 weeks ago today. 

Tonight's picture was taken on February 13, 2009. This was a Mattie creation! A large prop plane! Leave it to Mattie!!! He was fascinated by all forms of transportation, even as a baby and toddler. Mattie used all found materials at the hospital to create this plane in the child life playroom. So many wonderful memories were created in that room. 

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

• Number of people diagnosed with the virus: 77,043,242
• Number of people who died from the virus: 908,619

Today was quite the day! I took my dad for a Lexiscan in Arlington, VA. This is a type of nuclear scanning test. It shows how well blood flows to the heart muscle. The Lexiscan stress test involves injecting a medication called lexiscan into your IV while you are closely monitored. The medication makes the heart respond as if you are exercising. This test is used for people who are unable to exercise or can’t exercise for very long.

My dad had to fast starting at midnight, and therefore couldn't have breakfast today. So my strategy was to eat cereal before I woke him up. Then I woke him up, got him showered, dressed and in the car. Not watching us eat breakfast, was a good plan. 

Honestly there is NO way to appropriately prepare an older person for any sort of scanning procedure. These are just stressful and very tiring procedures for them. Then add mid-late dementia to the equation, and all I can say is WOW!

My dad's test was FOUR HOURS today. The tech who worked with us was wonderful and he had NO problem with me being in tow. Smart man! In fact, at the end of FOUR HOURS he told me I was a life saver, and made the procedure more bearable for my dad. I agree 100%, for multiple reasons. 

This is a three staged procedure. So that alone confused my dad. I had to explain over and over the stages and what step we were on. I had to prep him for what he could be feeling at each of the stages. But most of all, I had to help him in and out of clothes, to the bathroom multiple times (as the Lexiscan agent caused him to have diarrhea twice during the test), up on the procedure tables and the Lexiscan machine. The machine was a total nightmare for my dad. 

My dad has stenosis, and his upper back and neck are frozen forward. Meaning that he can't lie flat. Which is required for this machine. In addition, you have to lift your arms over your head and hold them that way for 18 minutes of the test. Impossible for my dad. His body is frozen in a way that prevents him from lying flat and forget his range of motion with his arms. It is awful. To get his arms to stay slightly above his head, the tech taped his elbows and I grabbed his hands and held them above his head for the entire length of the procedure. My dad is exhausted tonight, and I am not far behind. 

Every step of the test required walking from one location to the next, then lots of waiting around and frankly I have no idea how an older person does any of this without an advocate or family member in tow. My dad survived the procedure, but if you ask him, he will tell you this is one of the worst things he has ever done. He looks and sounds wiped out tonight. 

This is what the Lexiscan looks like (below). This isn't my dad in the photo, but you get the idea. The steps for the procedure are below. After the scan was over, I drove back to the house, picked up my mom and then took them out to lunch. Needless to say, I spent an inordinate amount of the day driving around on top of helping my dad with this test. The good news is all his scan results from yesterday and today came back normal. 

1. During the first part of your test, a nuclear medicine technologist will place an IV into a vein in your arm or hand and inject a small amount of cardiolite. Cardiolite is a radioactive tracer -- it is not a dye. It will be necessary for you to wait approximately 30 minutes after the cardiolite injection to allow it to circulate.
2. You will then be asked to lie very still on a special table under a camera (“gamma camera”) with your arms over your head for about 12-15 minutes. The camera will record images that show the cardiologist how efficiently blood is circulated through the coronary arteries to each area of the heart muscle at rest.
3. During the second part of your test, a stress lab technician will prep ten small areas on your chest and place electrodes (small, flat, sticky patches) on these areas. The electrodes are attached to an EKG monitor that charts your heart's electrical activity during the test.
4. You will lie on an exam table while the technician performs EKG’s and blood pressures while you are lying down, sitting up and standing.
5. Next, a medication called lexiscan is injected into your IV by a nurse, respiratory therapist or physician over 20 seconds while you are either walking very slowly on the treadmill or sitting on the side of the exam table moving your legs in a walking motion.
6. A nurse, respiratory therapist or physician will flush your IV with saline immediately after injecting the lexiscan. A small amount of cardiolite will be injected into your IV 10-20 seconds after your IV is flushed with saline.
7. Your blood pressure will be taken after the cardiolite is injected into your IV and every two minutes in recovery.
8. Please tell the technician immediately if you feel pain or discomfort in your chest, arm or jaw or if you feel short of breath, dizzy, headache, lightheaded or if you have any other unusual symptoms at any time during the test. The symptoms will go away typically within 3-4 minutes after the lexiscan injection.
9. Your heart rate, EKG, and blood pressure are monitored throughout the test. The stress lab personnel will watch for any changes on the EKG monitor that suggest the test should be stopped. A physician is available if needed.
10. When the lexiscan portion of the test is completed, your IV will be taken out. You willwait for approximately 30-60 minutes after the cardiolite injection to allow it to circulate, then you will be asked to again lie very still under the camera with your arms over your head for about 12-15 minutes. The camera will record images that show the cardiologist how well blood circulates through the coronary arteries to each area of the heart muscle during cardiac stress. If a part of the heart muscle doesn’t receive a normal blood supply, less than a normal amount of cardiolite will be in those heart muscle cells. 

Monday, February 7, 2022

Monday, February 7, 2022

Tonight's picture was taken in February of 2009. Clearly it was Valentine's season! Mattie's school surprised him with boxes filled of valentine's from classmates along with all sorts of treats. Including this very large lollipop. I think Mattie thought this lollipop was so neat, he never ate it. 

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

• Number of people diagnosed with the virus: 76,795,356
• Number of people who died from the virus: 904,979

My morning started on these stairs. Typically I take a shower and get dressed first before coming downstairs. But with Peter away, the animals want attention and they want it early in the morning. Sunny came into my bedroom at 5am. So when I got up, he couldn't wait to be fed. Instead, he was herding me to go downstairs. So I took my glass of juice from upstairs and led him to the hallway to go down the stairs. 

I made the mistake of walking in front of him while he was coming down the stairs. After about the second or third step from the top, Sunny slipped! He literally slid down the stairs with his legs slayed out. Naturally he hit me, almost like a bowling ball hits a pin! We both went flying down the stairs together, and Sunny landed up at the foot of the stairs and I fell on top of him. He let out with a howl. My juice glass went flying and there was cranberry juice everywhere. I think both of us were stunned! I was screaming throughout the entire ordeal but NO ONE heard me! Luckily I did not kill myself going down the stairs, because I would have been there a while.

So this is how my day started. But there was no time to reflect or to see if I was okay. Because I had to help Sunny up, which meant physically picking him up off the floor. I immediately gave him his orthopedic pain med and fed him. I let him rest while I went back upstairs to shower and dress. I had to get it together because my dad's speech therapist was coming and then at 11:30am, we had to leave the house to go to his echocardiogram. I honestly feel like I am on a sick treadmill. I am happy to report that both Sunny and I are physically fine. It is a miracle. Now if he comes up the stairs for any reason, I am helping him down with his sling, that I got from his physical therapist. This will enable me to control his back end and slow him down. 

After my dad's speech therapy session, which is actually very interesting, and I am learning some memory strategies in the process, I loaded both of my parents in the car. My mom decided not to go shopping, while I took my dad for his test. This happened to be a good thing, given my experience! However, my mom and dad move at different speeds and in the process it is very challenging for me to manage them both at the same time. 

My dad's echocardiogram was at a cardiology office at the Reston Hospital Center. I am hoping I NEVER have to return to this hospital or facility again. First of which is it is not user friendly for people with disabilities. In fact their entire parking garage has no disabled spots. The only disabled parking is located in front of the medical buildings, but with only 6 spots available, they fill quickly. So I drove up to the building and let me parents out and I parked. I couldn't have done this if my mom were not with me. Therefore, that alone has made me decide..... I am NOT going back. 

But that wasn't the only issue. Earlier in the week, I spoke to the office in Arlington, VA and explained that my dad has mid to late dementia and therefore needs a family member present for all appointments and testing. The person I spoke to wrote it into his chart and assured me this wouldn't be a problem. Well that is until I went to the Reston office today. The tech took us back for his echocardiogram, but she told me I couldn't stay. I wasn't allowed in the room for the test. I told her I got approval for this given my dad's cognitive issues. I was so mad at her, I told her I wanted to speak to her manager. I was escorted out of the testing room and back to the waiting area. Her manager spoke to me in front of EVERYONE in this waiting room. Of course that isn't ethical, and I believe it is a HIPAA violation, but that was the least of my concerns. My concern was my dad was undergoing a test, and I wasn't in there. I literally gave it to the manager and I told her I don't care about her policy, and it needs to be changed. I also told her to speak to the Arlington, VA office, as I got my request pre-cleared. She did just that, she called the Arlington office. Within minutes, I was back into the room with my dad. 

My dad has many physical issues, and lying sideways on an exam table is virtually impossible. He needed a lot of help and my presence was indeed needed. What this tech was thinking is beyond me. Oh and while in the office waiting area, don't you know some woman came up to me and handed me her business card. She is a caregiver and was offering her services. I literally wanted to flip out, as approaching me while balancing so much was less than appreciated. All I know is what I accomplished today, no ordinary caregiver could do! The fact that she thinks I would allow a perfect stranger to care for my parents is bordering on hysterical. As she doesn't work for an agency, but for herself. 

After the test, I took my parents out to lunch. My dad is a total danger to himself. People with dementia have eating issues. My dad eats like a vacuum cleaner, he sucks in food, doesn't chew well, and doesn't pause for even a second. So today he ate so fast that he started hiccupping and he was having trouble getting the food down his throat. It was a terrible sight to watch and the whole thing made my mom upset and neurotic. My dad has a history of uncontrollable hiccups. Which have required hospitalization each time. So hearing my dad hiccup, sent my mom over the deep end. I told my dad to stop eating or drinking and to just breath. Honestly without instruction, he would continue packing food into his mouth, despite how he was clearly feeling! I then gave my dad a mouthful of sugar, which always helps me with hiccups. The hiccups did go away, but I have to tell you it was a frazzling kind of day. Yesterday may have been peaceful, but I am under NO delusion that this will ever be the norm. 

Sunday, February 6, 2022

Sunday, February 6, 2022

Tonight's picture was taken in February of 2009. This was a typical physical therapy session for Mattie. The line behind Mattie was comprised of his art therapist (Jenny), his social worker (Denise), his other art therapist (Jessie), and a physical therapy intern. What you can't see was in front of Mattie was Linda, his child life specialist, and Anna, his physical therapist. These were an incredible team of women who understood that Mattie needed a lot of emotional support as he re-learned how to walk. This might look ridiculous, but I can't tell you how much their physical and psychosocial presence made in our daily lives. It just isn't quantifiable! Though Mattie never really walked again, other than a few steps, I don't think we could have survived the daily horrors of Mattie's cancer without THIS team of people. 

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

• Number of people diagnosed with the virus: 76,493,705
• Number of people who died from the virus: 902,560

Peter flew to Knoxville, TN today for a two day meeting. This is after coming off of a trip to Syracuse, NY. Peter is under a great deal of stress work wise, and of course our home life has been an adjustment. Though I know Peter doesn't like leaving me to balance everything, I know it is important for him to travel. Both for the health of his career, and frankly for his mental health. He needs a break from the daily pace. 

Meanwhile, Indie is already pining for Peter. She is most definitely his cat! Within two hours of his departure from the house, she was sitting on his side of the bed. 

In comparison to other days, today was a relatively calm day. Same routine but my dad's bowel movements were under control, we got out for lunch (without incidence), and I am planning the day tomorrow, as my dad needs an echocardiogram. That may sound easy, but there are logistics to be managed, as my dad has a speech therapy session before he leaves the house, I have to make sure he has time to go to the bathroom before we leave, I figured out where to drop my mom off while I am with my dad for the testing, and therefore have accounted for all contingencies.