Wednesday, August 12, 2020

Wednesday, August 12, 2020

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and this photo showed Mattie being escorted to a scan. Mattie could not do scans without sedation. Peter and I learned that the hard way! Each scan Mattie did without sedation landed up being a traumatic experience. For example, Mattie was very scared of MRIs and CT scans. The noise of the machines bothered him intensely and Mattie's MRIs weren't short, they lasted 90 minutes or longer! Mattie was so traumatized by doing scans without sedation, that he would hide under the scan table, wouldn't come out, cried hysterically, and the scan couldn't be completed. Despite my best attempts at explaining this to Mattie's doctor, he refused to understand the emotions and extent of the issues. That was until Linda (child life professional) and Debbi (sedation nurse) came onto the scene and observed Mattie's reaction for themselves! After which, Mattie NEVER had a scan or procedure without sedation again.  

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

• number of people diagnosed with the virus: 5,187,611
• number of people who died from the virus: 165,831

It was another early morning. I was up by 5:45am. It is vital to get up early in order for me to get showered, dressed, and breakfast made before I wake up my dad and get him ready. Though the caregiver was coming this morning, her schedule is 8am to noon. Given that we had to leave the house at 9am to make a 9:30am doctor appointment, I had to get the shower routine started at 7:30am. 

We had breakfast together, and then all of us (including the caregiver) went to the doctor's office. Only one of us was allowed in the exam room because of COVID, so I stayed with my dad and my mom and the caregiver waited in the hallway. 

I learned today that my dad has a larger sized kidney stone in his left kidney. Which will need to be monitored. When I return in December, I will take my dad for a follow up xray and appointment. I liked the urologist a lot and given the questions I had for him, he asked me where I practice! Hysterical!

The doctor performed an ultrasound in the office. The ultrasound can detect cysts, tumors, abscesses, obstructions, fluid collection, and infection within or around the kidneys. Stones of the kidneys and ureters may be detected by ultrasound.

See the bright dot in the center? That is a kidney stone. Fortunately my dad has no other masses, no blockages, or inflammation. 

The x-ray my dad took on Monday confirmed that the ureter stent came out on its own. When a kidney stone gets lodged in the ureter, surgery is needed (which my dad had in May). However, a tube like stent is inserted from the kidney to the bladder during the surgery, to keep the ureter open so it will not collapse on itself post-surgery. The stent usually stays in 3-7 days. Most of us need to go back to the urologist to get the stent removed. In my dad's case, he urinated it out! The doctor did not believe me, but after seeing the x-ray, he said I was right.

So far it has been a busy week.... Monday we saw my dad's primary care doctor, Tuesday, my parents had a dental appointment, and today we saw the urologist. It is a real challenge to get to appointments on time, but we did it. 

Everyday people are coming and going into my parent's house. Caregivers, a nurse, physical and occupational therapists, and a wound care specialist. We have no real control over this, it is what my dad needs. The urologist asked me today if I was afraid to fly across the country?! My answer is WHAT CHOICE DO I HAVE? Life is filled with risk, and I have learned I have to assess the risk and make the best decisions possible. 

Tuesday, August 11, 2020

Tuesday, August 11, 2020 -- Mattie died 567 weeks ago today. 

Tonight's picture was taken on August 6, 2008. Mattie's good friend, Charlotte, came to the hospital to visit Mattie. This was Charlotte's first visit to the hospital. Visiting a hospital, especially a pediatric unit, is never easy. But despite all the sounds, smells, and sights, Charlotte never missed an opportunity to visit her friend. That day they had a painting party together right outside Mattie hospital room, in the middle of the hallway. I learned a lot from Mattie's child life professional and Mattie! After all, being in the hospital did not mean that Mattie was no longer a child. He was and he needed those creative outlets to be himself. I am so glad we never missed an opportunity to give him those moments and I am grateful he had the companionship of Charlotte.

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

• number of people diagnosed with the virus: 5,130,784
• number of people who died from the virus: 164,603

My morning started at 5:30am. I wanted to get up, showered, and dressed before starting breakfast. At 7am, I woke my dad up and got him showered, dressed and downstairs for breakfast. All of this may sound easy, but every aspect of getting my dad ready to leave home by 8:30am, takes great coordination. 

Yesterday, I learned that my parents had a dental hygiene appointment in September. I was concerned about my mom managing the logistics of this alone, so I contacted the dental office to see if I could get them an appointment during the month of August while I am here. I gave the dental office some insight into my parent's situation and why I would appreciate their cooperation in making this happen. I was fortunate that they were able to squeeze my parents in this morning. 

My parent's dentist is very compassionate and he donates 800 toothbrushes a year to Mattie Miracle. It was wonderful to be able to meet his dentist in person today to thank him personally. We were at the dentist office for two hours, as both of my parent's had a teeth cleaning. Nonetheless, the whole process went smoothly. 

Now I am waiting for a dryer repair person to show up! I am trying to accomplish a task each day as days here are full, and it takes a lot of oversight and management to get chores and issues resolved. It would be IMPOSSIBLE for my mom to do these things and also support my dad. 

Today's Sunny photo! Sunny is in essence at summer camp. He is enjoying his days in Boston! He spends a lot of time outside in the backyard checking out anything that moves.... like squirrels and chipmunks. 

Sunny and OC the cat met officially today! OC ('Outdoor Cat') is Peter's parents cat. He is an old fellow, and has significant health issues. Therefore, it is hard to know how he'd react to Sunny. Clearly OC accepted Sunny. In fact, I have yet to meet an animal or HUMAN who did not like Sunny.

Monday, August 10, 2020

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Monday, August 10, 2020

Tonight's picture was taken on August 6, 2008. Next to Mattie was Linda, his child life specialist. They were in the middle of the hallway, outside Mattie's hospital room. What were they doing? Linda understood that Mattie's "girlfriend," Charlotte, was coming to the hospital for the FIRST time to visit Mattie. Linda wanted that visit to go well and therefore set up a painting party in the hospital unit to normalize the setting for Charlotte, and also to give the children something to do together that had nothing to do with Mattie's illness. It was a brilliant plan. But of course Charlotte was a special friend, who never abandoned Mattie and visited him often throughout his cancer journey. 

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

• number of people diagnosed with the virus: 5,075,678
• number of people who died from the virus: 163,282

Today and Tuesday, no caregivers are coming. I thought that would make my day less stressful. As I did not have to oversee and manage them. But today was anything but easy.

It started with the smoke detector going off at 4am in one of my parent's bedrooms. It was so loud, it woke us up from a deep sleep. Where is the smoke detector? Try a closet! A stupid place for a detector. In any case, I got up on a chair and managed to get the battery out of the gadget. Typically that stops the sound. NO such luck. The smoke detectors are connected to some sort of electrical circuitry in the house. I wasn't about to play with wires at 4am, so I literally put a pillow over the detector and closed the door. I attempted to go back to sleep. 

I got up at 7am. Which is LATE. I got myself together quickly and then started addressing my dad's needs. Which means toileting, showering, and dressing. Then got him downstairs and wanted a haircut. So I squeezed that in, started the laundry and made breakfast. At 10am, my dad's physical therapist came for shortened session.

My dad went up and down 15 stairs SIX times this morning. That was a total work out for him. 

My dad goes up much easier than coming down! The banister is different coming down. It is lower and causes him to tip forward while coming down. My dad's left arm isn't strong (as he broke it years ago), so holding onto the left banister isn't possible. 

After going up and down the stairs, my dad then did 50 sit and stands. Which truly wears him out. 

After physical therapy, I got my parents into the car and drove to his 10:45am doctor's appointment. When we got to the office, they said we did not have an appointment. I thought I was going to blow! But the doctor did make time to see us. 

Since my dad passed a kidney stone on August 7th, he needed to provide a urine sample and have a KUB (kidney, ureter, bladder) x-ray. My luck, and I am being facetious, my dad wasn't able to give a urine sample in the office and the x-ray tech at the office was off today. So instead, I was given a urine specimen cup to capture urine later in the day and bring it back. Also had to go to a testing center to get the x-ray done. A lot of running around today. 

While out, the dentist office contacted my mom about a September date for dental cleanings. I suggested she get appointments for August, so I could assist her. She did not want to do it, so I contacted the office myself. Bright and early we have appointments tomorrow morning. I just know it is a lot easier for me to move this caravan than my mom doing it alone or with a caregiver in tow. 

Now dealing with folding laundry and been on the phone for an hour ON HOLD with USPS. They want to deliver a package to my parents that requires a payment of $200. I don't think so! Not sure how the US Post Office functions, when they ask clients to wait on hold for an hour in order to talk to a live human being. Just awful! 

Meanwhile, Peter sent me this adorable photo of Miss Indie playing in Boston. 

Sunday, August 9, 2020

Sunday, August 9, 2020

Tonight's picture was taken in August of 2008. Hard to believe that Mattie was diagnosed with cancer at that point. That weekend, Mattie and Peter met up with our neighbor and they walked JJ, the Jack Russell Terrier. Mattie loved JJ and these two practically grew up together. When Mattie died, JJ was besides himself. He wouldn't eat for weeks and every afternoon, he came down to our front door and sat on our outside mat. Hoping to find and see Mattie. I learned from JJ and our cat, Patches, that animals do indeed grieve. 

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

• number of people diagnosed with the virus: 5,041,473
• number of people who died from the virus: 162,913

While my dad's caregiver was here this morning, I told my mom that we had to get out, get fresh air and walk. Because of my dad's situation, it is impossible to leave him alone. Which means it is difficult to get chores done and forget about having a minute to catch your breath.

Outside my parent's living room window is this fountain. The birds LOVE the fountain, and use it as a bird bath. We get all sorts of birds on the fountain, including hummingbirds. 

On our walk, we passed this house. I absolutely love its gardens. 

It was wonderful to see all this greenery and appreciate the roses. It was a good mental health break. As I am all aches of pains and even advil isn't helping.

Check out this tree! It literally has a branch that is sitting on top of the brick wall! It looks more like an octopus!

While walking we passed two women. One was telling the other that Frank Sinatra once lived in this house. I never knew this! In fact, Mary Astor and her husband built the house in the 1930's, which Frank Sinatra owned in the late 1940's and Bobby Darin and Sandra Dee owned in the 1960's. 

https://tolucalake.com/2019/07/refuge-of-the-stars/?fbclid=IwAR1GL7Ja_pkbudZAhPQ-sg25xw5L8ELZkDKoVLiV8x3xN5MXBDi8sTeyjH8

How did you like this spiky plant? It is as big as I am. 

The beauty of a sunflower! 

Meanwhile, check out Sunny! Making himself right at home with Peter's home. 

Saturday, August 8, 2020

Saturday, August 8, 2020

Tonight's picture was taken on August 1, 2008, ten days after we learned about Mattie's diagnosis. Honestly at that point, none of us knew if we were coming or going. While in the outpatient clinic, Mattie quickly became buddies with the art therapists and the art table. Thankfully as Jenny and Jessie were life savers for all of us, and art became the productive and therapeutic diversion during our 14 months of hospitalization. 

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

• number of people diagnosed with the virus: 4,994,276
• number of people who died from the virus: 162,381

I woke up this morning to some photos of Miss Indie in Boston. Indie absolutely loves sinks. You can leave her with a bowl of water, but she would much prefer getting you to turn on the sink so she could get water on the tap!

Typically when I go to Boston with Peter, Indie hides for days under a bed. As it takes her a while to adjust to her new surroundings. But Indie has gotten her brave on and is roaming around the house and making herself comfortable!

Cats and window sills!

Miss curiosity! Thinks a napkin is a bird! 

Meanwhile, Sunny loves to visit Boston. It is like going to summer camp. He gets a lot of backyard time, to watch birds, and look for squirrels and chipmunks!

After a busy day of exploring, every good boy needs a nap!

Meanwhile, out in LA...... My days start at 6:15am, so that I can get showered, dressed, and make breakfast before the caregiver comes at 8am. 

At 8am, the weekend caregiver arrived and she heard about our weekly caregiver who quit to take another job which is offering her more work hours. I have to say I am not as angry as I was when I first heard the news about this woman leaving. Yet I have put my dad's other two caregivers on notice, that I would like to know if they are planning on leaving. Just when things were getting stabilized with care, everything once again fallen apart. I gave today's caregiver a lecture. As she says the caregiver must follow the company's policy which dictates that if a caregiver is planning to leave a job she must first alert the company and then the company alerts the client. Perhaps that is the policy, but there is a difference between policy and ethical behavior. 

Caregiving is not like your typical job! These individuals work in homes and with vulnerable people. When families invite these folks in, we are expecting them to be trustworthy and because we see them daily, a certain level of rapport and friendship forms. Therefore, if the policy is that a caregiver alerts the agency about leaving employment, the caregiver should also have the decency to let the family know of this decision. As our relationship is with the caregiver NOT the agency. It would give the family the opportunity to discuss to have some closure about the departure. 

Friday, August 7, 2020

Friday, August 7, 2020

Tonight's picture was taken on July 31, 2008. You maybe asking yourself, what was this? When we initially learned about Mattie's cancer, the next step was to explain this to our six year old. I told Mattie's care team that he LOVED bugs. He liked them, but that did not mean he wanted them in his body. So the way we helped Mattie visualize cancer, was in the form of a 'bone bug.' We explained that he had something like bone bugs inside him and that the way to get rid of them was to use a special medication called chemotherapy. So Mattie and his art therapists created a 'bone bug' out of pink clay. We then asked Mattie what he would do if he saw a big bone bug crawling around him. Naturally the inclination was to stomp on it and squash it. Which was exactly what Mattie did! This photo was of the squashed clay bone bug. By analogy, we explained that the chemotherapy was going to be like Mattie's foot. It was going to squash out the bone bugs floating inside of him. This was a great analogy and one that Mattie instantly related to!

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

• number of people diagnosed with the virus: 4,928,802
• number of people who died from the virus: 161,052

For the past two days I have noticed my dad was having issues urinating. Specifically he needed to run to the bathroom more and then after voiding, he would need to sit there for ten more minutes, while urine was simply dripping out drop by drop. Watching this was nerve wracking and I was determined today to call my dad's urologist. 

After my dad's caregiver arrived, I trailed up after her because I wanted to examine my dad's urinal from overnight, before it was cleaned. When I looked inside the urinal, I saw a solid mass. I put on gloves and retrieved it. I labeled it a bladder stone, but it is actually a kidney stone. This most definitely could explain the urination issues that I have been observing over two days. Needless to say, it was vital to reconnect with the doctor, because this doctor performed kidney stone surgery on my dad in May and also treated him for urinary sepsis. I want to make sure my dad has no other stones and the potential for an infection. So my dad will get an x-ray next week and see the doctor for follow up care. I spoke to the doctor today and I actually liked him.

Peter and his parents went to the Lobster Pool in Rockport, MA today. I have been there many times, and they wanted me to know they were thinking of me. 

Meanwhile, my boy is enjoying his outdoor time in Boston! He loves Peter's parents backyard! Specially looking for chipmunks! A pass time Mattie also enjoyed! 

All I know is I am constantly moving from one task to another! Just when I think tomorrow will be easier, it isn't! What I find particularly annoying is I am trying to figure out my dad's caregiving needs, and yet the caregiving company has their own needs! Of course they are a business and want more hours and more money. Regardless of our needs! Yet if we don't comply, I am seeing that quality and professional caregivers move on and take other jobs that offer more hours (which of course translates into more pay). 

Thursday, August 6, 2020

Thursday, August 6, 2020

Tonight's picture was taken in August 2008. Mattie's cousins came down from Boston to visit with him over the weekend. Mattie's kindergarten class gave him an electronic gaming system, so he could play it in the hospital. Mattie's cousins were showing him how it worked. However, Mattie wasn't into electronic devices and he rarely played with this gaming system. He much preferred human interaction and play that involved building and creating with objects. 

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

• number of people diagnosed with the virus: 4,873,747
• number of people who died from the virus: 159,931

This is how my morning started with a photo of my three driving to Boston. Peter is now safely there and visiting with his parents. Sunny looks like he doesn't know what hit him!

It was a three ring circus this morning. We had my dad's caregiver who arrived at 8am. The housekeepers came at 9am, the wound care specialist came at 9:30am, and the physical therapist came at 10am. It is a lot of people and things to juggle here!

When I arrived in Los Angeles in June, I found out that my dad had a sore on his back bone. The wound care specialist told me that the sore developed because of him being sedentary and malnourished. Now a month later and with weekly care, this is what it looks like (below). To me it looks about the same. The specialist told me that since the sore is on a bone and in a place that always gets rubbed when sitting or lying down, it is hard for it to heal. The dressing that goes over this wound gets changed every two days. 

Jon, my dad's physical therapist came this morning, and we went through all his home exercises. I am VERY very frustrated. I took a video of each exercise and wrote detailed notes to the caregivers and explained that these exercises needed to be done DAILY! Guess what? They were NEVER done. I was livid but couldn't express that, because it would accomplish nothing. So again, I will have to address this with each caregiver. 

One of the PT exercises involves my dad getting up and down from the chair. Try about 20 times. When my dad first started this in June, it was a challenge. Now he is doing it smoothly!

My dad goes up and down on this toes. 

Kicking!

Frankly my dad's physical issues pale in comparison to the cognitive and emotional issues. This is what can be very wearing 24/7. He can do things that aren't rational or logical and of course this can lead to emotional outbursts. In the midst of all of this, my dad has always had irritable bowel syndrome. Symptoms include abdominal pain, bloating, diarrhea, and constipation. Some people can control their symptoms by managing diet, lifestyle, and stress. Prior to my dad's hospitalizations managing this chronic disease was challenging but now it is like mission impossible. As the need for the bathroom can arise within seconds, but now he can't more as fast, nor can he get his pants off to go to the bathroom. So this causes frustration, stress, and great anxiety. 

I have provided caregiving support to my maternal grandmother and of course to Mattie. Not to mention my friend, Mary. However, no two caregiving situations are the same mainly because of the personality of the person you are caring for. In June and July, I had a very compassionate and patient demeanor when working with my dad. But now, I am taking a more firmer and tough love approach because the only way he will become more independent and be able to age in place, is if he takes an active approach and wants his situation to improve.