Saturday, March 5, 2022

Saturday, March 5, 2022

Tonight's picture was taken in March of 2007. We took Mattie to Key West for spring break and one of the stores we stopped at had lots of trinkets and this big fellow made out of sea sponges. Mattie thought this was beyond neat. When I look at this moment in time, Mattie looked happy and the picture of health. It would never have crossed my mind that a year later he would be diagnosed with cancer. 

Quote of the day: Listening is being able to be changed by the other person. ~ Alan Alda

I got to the hospital at 9am this morning. Not sure how I did that since I am exhausted. When I got to my dad's room he was very disoriented and in addition to that received NO breakfast. Fortunately I brought him breakfast from home. When I told the nurse he received no food, she really had no idea why. She then gave me a menu and I called dining services. You will love this, there was NO RECORD of him being a patient in the hospital and therefore they did not know to bring my dad food. Honestly it was like one more layer to the dysfunctional cake. I wish that was where the nightmare ended. It was only the beginning. I should mention that when I actually got to the hospital and entered my dad's room I wasn't only dealing with his disorientation and no food issue, but a representative from the pacemaker company was there and testing his unit. So I had to deal with him and help my dad understand just what on earth this guy was talking about, as I have to admit it is hard to understand that the pacemaker is like a computer that records data and then sends it wirelessly to a home base that will be kept by his night stand. 

My dad was very confused, he thought I spent the night in the room with him and then told me he was going home today! He said that they were talking about discharging him. I said NO WAY, and that I had to address this issue. Then in walked the hospitalist. This woman and I are like oil and water. She told my my dad's vitals looked good and he was cleared to go home. I then said that there is NO WAY he could go home. That he can hardly move from back pain as a result of the procedure yesterday and also because he can't use his left arm until the pacemaker's wires fully attach to the heart, which I am told takes a month. Without use of both arms and hands, my dad can't use his walker, he can't hold onto stair railings, and as I witnessed today, he can't even get himself out of bed or go from a standing to sitting position. A BIG BIG problem. 

The hospitalist isn't used to be openly challenged. Before continuing she said that she was surprised my dad got the pacemaker inserted yesterday. She wanted me to know that if it wasn't for my advocating, it wouldn't have happened. I noted the compliment but was too focused on her poor decision to discharge my dad. In any case, I told her I knew how to work the system to get my dad a pacemaker, and likewise she needs to work the system to figure out a way to prevent him from getting discharged. So to do this, she recommended a physical and occupational therapy consult. I agreed, but she still told me he would be discharged on Sunday. At which point I told her that she and I would be having this same battle again on Sunday morning. 

In any case, the physical therapist came to consult on my dad's case. It took her about two minutes to realize that he is in NO shape to go home. She feels it isn't safe. She told me she recommended acute rehab care for two weeks to a month, before transitioning him home. That sounded plausible and I was happy with the notion of that plan because given my dad's needs I am not sure I can physically manage him right now. In any case the therapist got him up from the bed and into a chair for about two hours.

Later in the afternoon, I was introduced to a machine called the Sara Stedy. A Sara Stedy is a mobile active lift with a safe working load of 400 lbs. The occupational therapy consult came in and used this machine to help move my dad from the chair back to bed. Funny comment... my dad said to me.... we need one of these!

In the midst of all of this I wrote a long email to the care manager for my dad's hospital unit. I felt he needed to be aware of all the problems we were facing. Later this evening, he came to find me and brought me back to his office to chat. He listened and apologized, though I am not quite sure change will actually happen to make care better. But here is the kicker. He showed me the clinical notes on my dad and the recommendation is that he get rehab in a skilled nursing facility, in other words a nursing home. Apparently the clinical staff at the hospital do not feel like he will qualify for acute care. I view acute care as a more hopeful, aggressive form of therapy that will help transition a patient home. My feelings about skilled nursing facilities are not positive. I have an appointment tomorrow with the acute care folks from the hospital and I want to learn why they feel like they can't accommodate my dad. Needless to say this news really set me off and I have debated since I heard it what I should do with my dad. 

Of course what also bothers me to NO end is why didn't the doctors prepare me for any of this? They made it sound like my dad would be in and out of the hospital and would return home with no problem. However, all they had to do was just look at my dad to know that he needs a walker to move safely about. So how on earth can he use a walker and move about if he can't put any weight on one arm for a month? This piece of information would have been important to know up front. I don't like surprises, especially when good communication and understanding the WHOLE patient could have avoided this shock. The problem is doctors for the most part don't worry about patients holistically or the consequences of medical treatment on their patients' quality of life. You can't treat a patient in a silo and unfortunately that is exactly what happened in this case. 

Friday, March 4, 2022

Friday, March 4, 2022

Tonight's picture was taken in March of 2007. We took Mattie to Key West for spring break to visit with Peter's parents. Along our journey we came across this wonderful traveler's palm. We explained the importance of this palm to Mattie..... in that it captures rainwater, which can be used in an emergency as a drinking supply. Mattie loved the whole notion, not to mention the beautiful fanned shape! You may not be able to tell, but Mattie was wearing his favorite ball cap (from Legoland) and sunglasses (Lightning McQueen themed)!

Quote of the day: The lack of patient engagement is the Achilles heel of health care delivery. ~ Terry McGeeney

I was at the hospital bright and early, by 7:30am! Since I wasn't sure how this hospital system works, I wanted to be there in case doctors rounded in the morning. I came to find out that this particular attending physician on duty never holds round on patients! Interesting, and I wasn't happy. 

Needless to say, I pulled a 14 hour day in the hospital today. But my presence was crucial. Literally I fought hard to get my dad's pacemaker procedure done today as promised. The first cardiologist who came into our room this morning wanted me to know that there were more pressing medical cases in front of my dad's and therefore his pacemaker placement may need to wait until Monday! NOT what to tell Vicki when tired. I lost it on him and on every other person I interacted with today. 

If I were at Georgetown, I would turn to Patient Advocacy and they would actually assist! At Virginia Hospital Center, you can forget it. I had to call them multiple times and then even after that there was NO return phone calls as promised or follow up! That only made Vicki angrier. Needless to say, I appreciate that my dad is in a more stable place than some other cardiac patients, but I see the WHOLE picture, not just his heart. 

Leaving my dad stuck in a hospital bed for three more days would lead to more atrophy, bed sores (as his skin is super sensitive), and definitely he'd be more confused cognitively. So when I factor all of this together, I made a very strong case for the need for the procedure to happen today!

I was like a dog with a bone. In fact, I even wrote to the Associate Vice President of the Emergency Room, a woman I got to know on Thursday during admissions. She runs an excellent service and I wanted to share with her our experience there and her wonderful employee, Althea (patient liaison of the ER). Althea made our 7 hour stay in the ER manageable and almost pleasant. A kind soul can truly make a bad situation MUCH MUCH better. Turns out that my email today, will earn Althea a gold star award! Very well deserved. However, in my glowing email, I also explained my less than stellar experience in the in-patient unit. I now have the name of the manager of my dad's unit, and tomorrow he is getting a reality check. 

I can't imagine what this hospital experience would be like for my dad if I wasn't there around the clock. For one thing, he wouldn't have gotten a pacemaker today. My dad is quiet, so he can fall under the radar, and can blend in. Meaning people don't believe me about his significant dementia. I don't like when healthcare professionals do not take me seriously. Especially when it is a subject matter I know better than them..... my father. 

I put many people in their place today and I am on a rampage about the need for improving communication with patients and families. I feel like my dad's unit is like a ghost town. Rarely do I see his nurses and I have to work hard to track them down. Not acceptable, and I have NO IDEA how my dad would be able to do this physically or mentally if I weren't around. Simple things are needed like hooking him up to an IV, emptying out the container capturing his urine, and so forth. Not to mention that I had his nurses help turn him today so that he doesn't get pressure sores. I am exhausted from managing people all day and my dad's needs. 

At 7pm, my dad finished his pacemaker procedure. It took two hours and he was under general anesthesia. However, even that wasn't easy, as I had to be assertive with the nurse and the anesthesiologist about my dad's severe allergies to contrast and cortisone. The anesthesiologist asked excellent questions and tried to accommodate me, the nurse just thought I was difficult. But on top of this recovery, I can't allow my dad to get uncontrollable hiccups for a week. Which is exactly what would happen if you give him contrast or cortisone. 

My dad came out of the procedure very very groggy and out of it. However, as soon as they gave him an xray in post-op he went hysterical. Everything was hurting him, and any slight movement of his back produced screaming. The nurse who thought I was being difficult prior to the procedure, changed her tune after seeing what I forewarned her about!

My dad has to wear a sling on his arm until Sunday night, he can't shower for five days, and for a month can't lift his left arm higher than his shoulder or carry anything heavy. In addition, we apparently are coming home with a home base device that records data on the pacemaker and sends it back to the doctor. I feel like I have a lot to learn and I am NOT taking my dad home until I feel he is stable enough. Certainly I can't take him home with a sling on, as he won't be able to use his walker. Again these are things his care team won't be thinking about, which is why I need to get myself back to the hospital early again tomorrow. 

Thursday, March 3, 2022

Thursday, March 3, 2022

Tonight's picture was taken in April of 2002. Mattie was about 5 or 6 days old and we took him home for the first time. Before we got into the car, I snapped a photo of Peter and Mattie together in front of Virginia Hospital Center. Ironically this was the hospital in which Mattie was born and also diagnosed with cancer. 

Quote of the day: You treat a disease, you win, you lose. You treat a person, I guarantee you, you'll win - no matter what the outcome. ~ Patch Adams

My morning was a nightmare. I got up early because I had to take my dad for his follow up primary care doctor appointment. When I got to his bedroom this morning, he was already up and in the bathroom. Very disoriented and very agitated. He had urinated all over the floor. I did get him into the shower, but while in the shower he pooped. It truly looked like a crime scene. I took photos, but will spare you the visuals. While pooping, he was screaming, and also dry heaving. When I got him out of the shower, he was white as a ghost and said he felt nauseous. ALL NOT GOOD SIGNS.

He did have breakfast and then we whisked him to the doctor's appointment. This doctor, as my faithful readers know, I call Dopey Doo! Dopey lived up to his name yet again today. I highlighted to the doctor my concern about my dad's exhaustion, everything that happened today, and the fact that my dad sleeps the entire day, and has no appetite. Do you know that the doctor told me that my dad should consult a sleep doctor because he probably has sleep apnea? It gets better, he even implied that I should switch his high blood pressure meds to the evening rather than the morning, so prevent him from getting tired. Mind you I told him I tried switching the timing of the meds before and it never mattered. He could tell I was getting agitated with him, actually practically battling him and talking him down. I felt he wasn't LISTENING and getting my caregiver observations and perspectives on the significant decline in my dad's energy level and behavior. 

After he dismissed us and told us to follow up with him again in four weeks, I loaded my parents into the car and noticed I had a voice mail. It was from my dad's cardiology office. I pestered them yesterday because I wanted my dad's heart monitor results. They apparently called the heart monitor company today and the company told them my dad's results constituted a medical emergency. He has a level two heart block, which means that the electrical signals between his atria and ventricles can intermittently fail to conduct. In fact in his case the heart monitor found that for periods of three seconds of so, his heart actually wasn't beating. A serious issue! The cardiology office asked if my dad was symptomatic. So I told them about his extreme exhaustion and their response was that I should get my dad to the nearest emergency room and quickly. 

I had to decide where to go. My initial instinct was Mattie's hospital. But that was too far away, so I elected to take my dad to Virginia Hospital Center. It was the BEST decision I made all week. Totally amazing place. I would give them an A+ today. As soon as I walked my parents into the ER, they immediately checked my dad in, put him in a wheelchair, and we were taken to an ER room. We were in the ER from 1pm to 8pm. At 8pm, my dad was admitted to a floor and I stayed with him until 10pm. He has to get a pacemaker put in tomorrow afternoon. 

All of this is very confusing for my dad and though I wanted to stay the night in the hospital with him, I had my mom in tow and neither one of us ate a meal accept for breakfast today. So I will return to the hospital alone at 9am on Friday.

They couldn't do enough for us in the ER. Everyone from doctors, residents, nurses, and techs were fabulous! Competent and compassionate. A special shout out goes to the ER's patient liaison, Althea. Althea is from South Africa and is a God sent. She introduced herself to us early on, and got my mom and I tea, my dad food, and helped us navigate through the ER. 

It wasn't only tasks that she helped with, what I was so impressed with was her listening skills, her true desire to help people, and her love and respect for all her patients. She caught my attention and even when I took my dad up to the hospital unit for admission, Althea sat with my mom in the ER so she wasn't by herself. Who does this? The answer is a VERY SPECIAL person! 

Hospital life is very taxing and my mom was wiped out. We have suggested to her that she stay home tomorrow and that I will spend the day in the hospital. 

I am signing off, as it is 11:30pm, I haven't eaten since breakfast, and I have to get up at 6am.

Wednesday, March 2, 2022

Wednesday, March 2, 2022

Tonight's picture was taken in February of 2007. That year we took Mattie to Key West to visit with Peter's parents. On our drive to Key West, we stopped along the road at this store. A store that had all sorts of trinkets and shells. Mattie enjoyed the stop and it was at this store that Mattie bought a butterfly windchime. Though this windchime fell apart, I still have it in one of my Mattie keepsake boxes. 

Quote of the day: Life is a mountain. Your goal is to find your path, not to reach the top. ~ Maxime Lagace

My mornings are truly frenetic. This morning, while getting out of the shower, I got a call from my former licensure board. I was literally juggling putting clothes on and getting myself together, making breakfast, and talking on the phone about some sensitive matters. I truly felt strung out, mainly because I knew my timing. I had to get my dad up by 8:30am, in order to get him washed, dressed, and having breakfast before 10am, when the medical social worker was scheduled to arrive. I was on the phone juggling a thousand tasks for an hour. By the time I got off the phone, I was frustrated and stressed out. Frustrated because I can't even have a phone call in peace, get dressed in peace, and in the process juggling so much, I am not focused on any one thing. Mind you a migraine started last night and it has continued into today. 

Meanwhile, I see another stepped decline in my dad. He is luggage. He is exhausted, wants to spend the entire day sleeping in his chair. In fact the new pattern is he is up at 3am. I am not in the bedroom with him, so I truly do not know what is going on at that hour. But soon, I may have to put in a nanny cam, to record what is going on. Needless to say him and my mom aren't sleeping well. But this is a definite change to my dad's pattern, which is always a red flag to me. 

Since it was 60 degrees today, I got my dad outside with his rollator. I wanted him to walk down the drive way and around our cul de sac. That did not GO well AT ALL. 

I also had a conference call this morning and when I am on the phone with other people living NORMAL lives, it makes me reflect how abnormal my life was and still is! Needless to say this doesn't put me in a happy place. 

Do I find the medical social worker helpful? I think she is trying to help, but there are NO simple answers here and my parents have very different needs! So I feel stuck and I hate seeing my dad disengaged with the world and sleeping all day. But as I said to the social worker today... my dad is happy. It is me who has to adjust my expectations with his dementia. 

In the midst of feeling like I am spiraling downhill, I received this wonderful surprise in the mail today. One of my best students who is now a NURSE in NYC, sent me these wonderful cookies. These four cookies are works of art and I can't wait to try them. Receiving this gift reminded me of my Team Mattie days. I may not have Mattie with me now, but my days are challenging and emotionally draining nonetheless. Thank you Ariel for thinking of me and for your friendship over all these years!

I also received this beautiful window catcher which says "thinking of you" and has a red cardinal dangling from it. This gift came from one of our researchers in Canada. This particular person is truly a very special clinician and when I first met her years ago at one of the Foundation's think tanks, I LIKED her immediately. I am deeply honored that she has become my friend and wish she lived closer. 

Tuesday, March 1, 2022

Tuesday, March 1, 2022 -- Mattie died 648 weeks ago today. 

Tonight's picture was taken in March of 2007. Seeing this photo reminds me that March is indeed a changeable month. It can still snow and on that day in 2007, it did. Of course Mattie couldn't resist. He went outside on our deck and created snow castles. A typical signature move of Mattie's was to add something from nature to the top of his sand or snow castles! In addition to a stick collection, we also had a rock collection going, as Mattie was into collecting all sorts of found objects. 

Quote of the day: The way I see it, if you want the rainbow, you gotta put up with the rain. ~ Dolly Parton

After almost two years of documenting COVID numbers, I have decided to return to my nightly quotes instead. Mattie's blog captures his journey, our journey with grief, our Foundation's activities, and also what is impacting our daily lives. Which is why I highlighted COVID numbers for the past two years. It documents a moment in our history. 

As many of my blog readers know, my friend Karen came down from NYC to visit last week. She left on Saturday and by early Monday morning (yesterday) went to the emergency room with an issue that is not COVID related. In any case, as I am hearing about her hospital experience and admission to a hospital unit, it reminded me of our days, months, and over a year of living in a hospital with Mattie. I still don't know how we survived this.

I am not sure why hospitals make you feel like you are entering a foreign country, but they do. What I mean about this is hospitals have their very own culture. Their own hierarchy and flow to how things work. Or DON'T work! One thing that is for certain is staying in a hospital ensures you won't get rest or a minute's peace. It's almost impossible to sleep with all the bells, whistles, and beeping of machines. Issues coming from other rooms, and of course the non-stop entering and exiting of hospital personnel through one's hospital room door. It is truly remarkable. I remember even putting up a big STOP sign in front of Mattie's door, but believe it or not, that didn't stop people from coming in. Forget about knocking..... they just walked in! It never ceased to amaze me. 

In addition to not having any peace, there is also what I call "hospital time." Hospitals work on their own time schedule, not the patient's! Patients have questions and concerns, but forget about getting immediate answers. Instead, we are at the mercy of doctors and their rounds! 

I always find it interesting hearing about a hospital experience through the eyes of someone else! Because it reminds me once again what is wrong with the system! If you are hospitalized for a long period of time like we were, you begin to blend into the dysfunctional system! You learn about hospital time, about living on little to no sleep, having access to non-nutritious or unappetizing food, and of course medical-ese! What do I mean by this? Medical-ese are medical terms and issues coming at you at a rapid fire pace from healthcare providers. I honestly wonder do doctors really think we all understand what they are saying to us, especially when we are fragile and not feeling well?  

The only thing I can say about living in a hospital for 14 months, is that I understand the system! I also understand how to work around the system, what words to use, who to use them with, and so forth. It is like I went through an educational or training program, but unfortunately at the end of my 14 months I did not get a certificate or degree..... instead, I live with the grief and long term consequences of Mattie's death. 

Monday, February 28, 2022

Monday, February 28, 2022

Today's picture was taken in February of 2008, only five months before Mattie was diagnosed with cancer. Which is hard to believe. In typical Mattie fashion, he was building all sorts of things in our living room. This plane included! He loved Legos and Tinker Toys and there was never a dull moment in our living and dining rooms when Mattie was alive. 

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

• Number of people diagnosed with the virus: 79,025,644
• Number of people who died from the virus: 949,957

Take a look at these two pals! Typically Indie and Sunny co-exist but not next to each other. Last night, they were both with us while watching TV. 

In fact, Indie joined Sunny on his bed. We were in shock, which is why I photographed the moment!

Meanwhile we received a magazine from Children's Hospital at Sinai today. One of the highlights was an honor roll of donors. I am proud to say that Mattie Miracle is at the Visionary Level!

I am not sure why I was surprised by this, maybe because I never really sit back and reflect on our donations in totality. But it is true we are most definitely at the $100,000 range for this institution. 

It was another crazy day here on the farm. My dad's occupational therapist came over this morning. She got to see exactly what I see and that is my dad is chronically exhausted. He was truly luggage and could hardly keep it eyes open. He did try to comply and walk ten minutes with her and do some arm exercises but his heart rate was high and he looked like he was dragging. 

However, even in that state, I had to get him up and to the car, because I was taking my mom for a CT scan of her lungs. Peter is busy working and I can't leave my dad home to his own devices. I think it is hysterical that the home health agency thinks I am fearful of taking my dad out! Not only do I take him out, I am dragging him to all sorts of things. 

After the CT scan, I took my parents out to lunch. I had to run back and forth to the bathroom so often during lunch, my step count was impressive! There is no peace, not a moment to just sit and do anything without jumping about. Needless to say at times I get very frustrated, very angry, and will just start screaming. That is NOT my typical way of interacting with the world, but I find that is what happens as a result of meeting everyone else's needs during every waking hour of my life. 

Sunday, February 27, 2022

Sunday, February 27, 2022

Tonight's picture was taken in February of 2008. That day Mattie's kindergarten class went on a field trip to Martha's Table in the city. Their goal was to work on assembling peanut butter and jelly sandwiches for the homeless. I signed myself up that day to be a helper and rode the bus with the teachers and the children. Naturally I snapped photos of the adventure! After the sandwich making was done, Mattie began helping to clean up. You can see him with his "girlfriend," Charlotte. They were busy at work and as always working together. They made a good team and brought out the best in each other. 

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

• Number of people diagnosed with the virus: 78,937,817
• Number of people who died from the virus: 948,397

This afternoon, after doing my morning tasks and grocery shopping, I took Sunny for a walk. Today was a good weather day and Sunny is very eager to walk in the woods all around our neighborhood. However, in August of 2019, while visiting my in-law's home in Massachusetts, I took Sunny for a walk in their woods and got VERY lost. So lost that I had to track down a hiker in the woods to help me get oriented and out of the woods. I was miles from their home and Peter had to pick me up by car. Needless to say, after that experience, I am always leery about going into the woods alone. Particularly since I have a bad sense of direction. 

There are many wonderful paths (like this one) to walk on near our home. I am eager to explore them one weekend, when Peter has time. Unfortunately today Peter was working on unpacking more boxes that belong to my parent's that are stacked in the basement. Honestly if it weren't for Peter, my parents would never get unpacked. I am just too worn out from moving myself and them, much less to unpack and deal with boxes. 

I walked on this pathway because there was only one way in and out. Making it impossible to get lost. However, at some point along the walk, I came to a fork in the path and told Sunny we had to turn around. 

Nonetheless, I look forward to exploring these woods and hopefully getting to know them just like I know Roosevelt Island. Roosevelt Island was our city haven, and now more than ever, I need a place of greenery to escape to for an hour of peace.