Saturday, March 12, 2022

Saturday, March 12, 2022

Tonight's picture was taken in March of 2005. This was classic Mattie entertainment in our home! Of course I would say that Peter inspired Mattie and together they were quite the pair. What they were trying to imitate for me was their version of a bug's face!

Quote of the day: If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward. ~ Martin Luther King Jr

It maybe March, but we began the day with snow. Typically I do not drive in the snow, because believe it or not, I never learned how. I learned to drive in California and I feel this limited my ability to handle all driving conditions. But given my busy days at the hospital, I decided I had to pull it together and go grocery shopping today. As I haven't done this in about two weeks! Our refrigerator was getting bear and whatever I had in it really needed to be tossed. 

Peter is still not 100%, but is thankfully making a strong come back to feeling better. His stomach has been upset for days. Ironically the grocery store was busy today. The check out person asked me if I was "snow shopping." Meaning stocking up because it is snowing! I said NO! I was buying things because my dad has been in the hospital for almost two weeks and I have no food in the house. 

 

My mom and I got to the hospital around noon. At which point I helped my dad with his lunch tray, reviewed his day, and logged about it. If we don't write it down, within five minutes he forgets anything he just did. In fact he can eat lunch, I can clear his tray away, and minutes later he will ask when's lunch. It is quite a commentary, which is why he can't be left to his own devices at home, and certainly NOT in a hospital. 

My dad had a very busy day today, starting at 7am. The highlights of his day were taking a shower (the first one in ten days) and walking up and down 16 steps. They are trying to work with him on this so that he can easily transition home next week. Because of the pacemaker, my dad can't put pressure or weight on his left hand/arm. This makes walking and getting up difficult. But they are working with him on this. In addition, he apparently walked 50 feet without a walker or cane today. I have NO IDEA why they are doing this with him, but perhaps they are showing him that he can balance more than he thinks. Nonetheless, with me he will always be using a walker. 

Yesterday they started my dad on 40mg of prednisone. It was the last resort because no topical creams were working to reduce the intense rash on his back. In fact many of the staff in acute rehab have never seen a patient react to adhesive like my dad. His rash was raw, spreading everywhere, and oozing as well. He was very very uncomfortable and couldn't concentrate on anything other than scratching. Which only made the rash worse. The prednisone seems to be working. They will begin tapering it down to 30mg tomorrow and Monday (20mg on Tuesday and Wednesday, 10mg on Thursday and Friday, etc). In addition because my dad is allergic to steroids, they are premedicating him with 10mg of baclofen (a muscle relaxant) to help prevent intractable hiccups (non-stop hiccups which require hospitalization). 

The days are LONG, as I got home at 7pm. So I am signing off as I need to make dinner and catch up on chores, just to repeat this day yet again tomorrow. 

Friday, March 11, 2022

Friday, March 11, 2022

Tonight's picture was taken in March of 2006. This was a typical sight in our home. Lots of things happening on the floor of our living and dining rooms. Mattie and I were playing Candy Land and apparently Peter snapped a photo of us. As you can see Mattie was all business and did not want to look at the camera. Of course another tell tale sign of Mattie was his sippy cup full of milk. Mattie drank so much milk that I always thought he'd have the strongest bones around.

Quote of the day: It’s your reaction to adversity, not adversity itself that determines how your life’s story will develop. ~ Dieter F. Uchtdorf

We had to get to the hospital by 9am because Fridays are team meetings for the entire unit. The meetings occur in each patient's room, during the 9am to 10:15am time frame. They don't give you a specific meeting time, so we had to arrive early to park and to get up to the room. The doctor, program director, and case manager arrived in the room by 9:50. They aren't kidding when they say the meeting will be short. Frankly it is a lot of information being directed at you, with little time for questions. 

The doctor updated us first. He was short and to the point. However, the main focus was the rash on my dad's back. He is so miserable that it makes it hard for them to keep his attention in therapy sessions and for him to get sleep at night. So the doctor decided to give my dad prednisone today because the rash is not responding to any topical creams! I assure you that the past two days, I have been lathering my dad up with all sorts of creams on the half hour. Even then, he is rocking side to side in his wheelchair trying to scratch his skin off. Rest assured I will never forget that my dad is allergic to adhesives in the future. Adhesives from heart monitor leads and adhesives from pads to prevent bed sores. The rash is all consuming and my dad can't focus on anything else, therefore a good chunk of our team meeting was focused on the rash. 

Once we moved off from the rash, apparently the team thinks my dad is doing great physically! HONESTLY, what planet are these people on? By the way in all this conversation there was little mention of my dad's dementia issues! So naturally I brought this up as it is the big elephant in the room and NOT talking about it won't make it disappear. It may not affect them in the long run, but it definitely impacts our family's quality of life. Since my dad is getting speech therapy in the rehab unit my question was how is this therapy assisting my dad and being integrated into his physical rehab? Mainly because I do not view any person in isolation, as they were doing today! Certainly it was clear that they can't manage the dementia and therefore that isn't even on the table when reviewing his physical rehab. All I know is I find my dad's dementia all consuming and when they tell me he is doing great and implying he is easy, I would like to suggest that they take him home for 24 hours and then LET'S talk!

At around noon today, one of the speech therapist's working with my dad came in for a session. She asked if yesterday's therapist who did a cognitive assessment called or wrote to me. I told her no! That said, I looked in the portal yesterday and I did see my dad's results from this assessment. NONE of which I agreed with as she deemed my dad as having mild deficits from dementia. There is NOTHING MILD about him! I pushed back on this therapist today and said I did not agree with these results and clearly they were one snapshot in time, and I am with my dad 24 by 7. In addition, I can't stand when they ask my dad about time, place, and person. Because these questions are repeatedly asked of him, he knows that it is March, 2022, that he is in the hospital, and Biden is president. But scratch the surface and you will find out that my dad has significant impairment. He can't retain information for more than a minute, he can't process multiple pieces of information he hears, his long term memory is fading, and the list goes on. These deficits make it very difficult to function in every day life, as my dad no longer can engage in conversation, he can't follow what's on TV, can't read and take in information, and has trouble with activities of daily living. Putting that aside.... HE'S GREAT, just ask them!

This is today's therapy session. My dad is up and participating in therapy, but between sessions and after them he is sleeping. I was at the hospital from 9am until 6:30pm. During that time, I may have spoken to my dad in full... thirty minutes. 

We learned today in the team meeting that my dad's discharge date is March 17, meaning he will receive in total 7 days of rehab. To put this into context, typically a rehab stay is 3 weeks to several months for the average patient. 

Thursday, March 10, 2022

Thursday, March 10, 2022

Tonight's picture was taken in March of 2006. Mattie was about 4 years old and he was doing some of his favorite things.... building with Legos and setting up his train tracks. In fact, there was never a day without a lot of activity going on right in the middle of our living and dining rooms. 

Quote of the day: Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you. ~ Misty Copeland

This morning my dad had back to back therapy until noon. So it made no sense for my mom and I to get to the hospital before then. Not having a rushed morning in weeks, felt wonderful. Though I had chores to do and emails to catch up on, I did not feel like I had to be jumping to meet my dad's every need.

When we got to the hospital, we found my dad in his room and in his wheelchair. He was wiped out from four hours of therapy. In addition to that he is in constant pain and irritated by a terrible rash on his back. This rash started on Saturday, after wearing heart monitor devices and pads to protect his body from pressure sores. Rather ironic. He has no pressure sores, but instead he is clearly allergic to the adhesives and his back looks red like a lobster with blisters. Honestly if I did not know better I would say he had poison ivy. 

In any case my dad was basically asleep for the entire time we visited. Though resting, on the half hour he complained of terrible itching. Moaning, complaining and scratching. Which only makes it worse. There isn't enough creams and ointments I can put on him to bring him relief. By the evening I gave it to his nurse. As she came in to find out how he was doing (after being gone for HOURS). He responded "fine," and I SNAPPED her head off. I told her he isn't fine and if it weren't for me, she would have been in his room putting cream on him every 30 minutes. Not a fan of his nurse today. 

This is my dad's schedule for tomorrow. It should really wipe him out. We have to get to the hospital before 9:30am, because the treatment team rounds at that time and wants to talk with patients and families. I have no idea what on earth they are going to say about my dad tomorrow. They are either going to continue to work with him or discharge him quickly. 

While at the hospital today, my friend Margy's husband went to visit Mattie's memorial tree. This was a Margy tradition, to visit his tree on milestones and anniversaries. Ken is keeping that tradition and created this beautiful ornament with a tribute to Margy and Mattie. 

It features Mattie Miracle's new program, M & M Wishes, which stands for Margy and Mattie. This program provides funding up to $1,000 to children with cancer to fulfill a wish list item or trip. 

A photo of the four of us together. 

Ken at Mattie's tree!

Meanwhile, Peter sent me this photo of our two fur babies. Eagerly awaiting my return tonight. 

When I got home at 7:30pm, I found that Peter was sick with food poisoning. I gave him my anti-nausea meds, with this hope that this will stabilize him so he can sleep. 

But the highlight of my day was this surprise treat from the Chatham Candy Manor from my friend Colleen. Colleen and I met at Boston College, as we were both getting master degrees in biology. Colleen was in my bridal party too and though we live far apart, we remain connected through a special friendship. This sweet treat really brightened up my day and week. I am very lucky that in the midst of such chaos and crisis to have incredible friends. 

Wednesday, March 9, 2022

Wednesday, March 9, 2022

Tonight's picture was taken in March of 2007. This dock was right outside the place we were staying near Key West. You can see Mattie's humor, as he had his hands and arms up as if he was holding up the dock. When I look at this photo, it is hard to believe that about a year later Mattie was diagnosed with cancer. 

Quote of the day: A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve

This was my morning where I thought I could start the day an hour later. My goal was to get to the hospital after 10am. However, by 8:30am, my phone was ringing and it was the hospital. My dad's occupational therapist to be specific. He had a ton of questions for me about my dad's abilities and when he called a second time he suggested I get to the hospital before 10am to meet with the physical therapist. Now if they told me this the night before, I would have been there. But I was told that it was important for the therapists to work one on one with my dad to get to know him. Obviously that did not go well because they see they are NOT working with a patient who is fully rational or cognitively intact. 

My mom wanted to go to the hospital with me, so I hurried her along, packed her breakfast, and got to the hospital before the physical therapist showed up. Before she came in, my dad told me he did not sleep last night. That instead he fell asleep at 5am, so he was tired. He proceeded to tell me he had ONE DREAM AFTER THE OTHER. The first dream was about the rehab program he is in and the patients in the program. Apparently he was in a patient group and while trying to talk with them he noticed that when they answered him no one made any sense. He then thought.... what is this program doing? How can they accept people who make no sense and can't communicate? His next dream apparently had to do with his ceiling tiles in his hospital room. He said that every tile was a TV and lights were blaring and it was scary and also annoying. While tracking him, he then said, I had to "CLOSE MY EYE IN HOPES IT WOULD GO AWAY." 

Hearing this alerted me of course to the fact that this sounds like a delusion, hallucination, you pick the term! I suspect that that his dreaming isn't really dreaming, but he is kept up at night because he has visions of things that make no sense to him. It now makes sense as to why for the past two weeks at home he has been getting up between 2-4am and my mom finds him in the bathroom. 

Though my dad's physical issues are significant, for me it has always been the dementia that makes his situation critical. All day today he was over the top, irrational, and down right difficult. I stayed at the hospital from 10am to 7pm. So this was another full day on top of many previous FULL days. 

Now you might now like this photo, but I am contending with this issue too. My dad has had a bad allergic reaction to all the adhesive material placed on his body from electrodes to pads to prevent pressure sores. It is a down right nightmare. If you touch my dad's skin, he is on fire, like a sunburn. My dad is uncomfortable and VERY focused on itching all day long. There isn't enough cream to manage this and tonight I asked the program manager what we can do about this! So wound care is coming in to consult. Mind you I told my dad's treatment team about this problem since SATURDAY!

This was my dad's treatment schedule today. I think it was a very full day for him and he is exhausted, which isn't helping his mental state. 

This is tomorrow's schedule. I have been told that we will have a family meeting with the treatment team on Friday. Lord knows what they will tell me. All I know is the PT today told me that my dad won't be here long! I would like to suggest she take my dad home and see just how EASY he is to take care of. 

Tonight after I gave my dad dinner (on a side note, I have no idea who helps patients eat, if family members are not around), he looked tired. So I suggested we get him into bed. 

At that point he became truculent. He said he wasn't getting into bed because he was coming home with us. He felt he finished his therapy for the day, and there was NO REASON to stay in this bed. I tried hard to get the point across that this was an inpatient facility, that therapists wanted to work with him on getting out of bed in the morning and dressed (therefore that meant he had to stay overnight), and that this program would last several days and today was ONLY DAY ONE!

We went around and around on this for close to an hour. I then alerted the staff that I needed to get him into bed and about the issues we were facing. At which point my dad's nurse said I couldn't leave for the night until he was actually in bed. I get it, because if he isn't in bed and was left in the chair, he could easily try to get up and fall. No matter how many times we have explained the rules to my dad...... (you can't get up from a chair or bed without someone from the hospital around, you can't put pressure on your left arm) they just don't stick.

All I know is yesterday he was hyper, extremely alert, and talkative, not to mention inappropriate from a sexual standpoint. While today he was combative, very confused, and difficult. It is hard enough managing his physical rehab, but it is the emotional and cognitive component to all of this that makes the situation much more volatile and draining. 

Tuesday, March 8, 2022

Tuesday, March 8, 2022 -- Mattie died 649 weeks ago today. 

Tonight's picture was taken in March of 2007. I honestly can't remember exactly where this was taken in Key West. But I know we were out and about with Peter's parents and we stopped for a snack and snapped this photo. I don't have many pictures with the three of us together, so this one caught my attention. 

Quote of the day: Wherever the art of Medicine is loved, there is also a love of Humanity. ~ Hippocrates

I remember Mattie's radiology tech at his hospital would say to me that sometimes people enter the medical profession with the best of intentions. But then they spend years in the system and the passion and love they have for the practice of medicine dwindles. Unfortunately there are many health care workers who fall in this category. Not necessarily any fault of their own. I think it is the result of long work days, intensity of the job, pressures from insurers and hospital administrators and the list goes on. 

My dad's admission to the hospital once again reminds me that working in a hospital is not for everyone. Yet when a kind and compassion nurse/doctor works with us, it truly can change the whole tone of the day. 

It is now close to midnight, and I have been at the hospital since 9am. I am wiped out from this hospital admission and though today I wasn't fighting anyone (THANK GOD), it was still a very long day. When I got to the hospital, they had my dad up and out of bed. He claims that he pushed the call light for the nurse, but no one answered him for hours, so instead he landed up going to the bathroom in bed. Unfortunately with my dad I never know if his reporting is accurate!

Unlike the past week, today my dad was up, lively, and animated. Like a completely different person. He spent the entire day in the chair, did not go back to bed and wasn't tired. Typically my dad isn't talkative, but today it was like he had a personality change. In addition, he became almost hyper sexual. Also not like him. He started joking with nurses and so forth about his body parts and whether they were going to take photos of him and sell tickets. Totally crazy stuff and out of character. So this caught my attention. This crazy stuff continued when we called Peter and my mom, both of whom were home today. 

After a full day on the 6th floor, we finally were admitted to the inpatient rehab unit at 6pm. Though everyone was very nice there, the room is in the old part of the hospital. So to me it is small and depressing. Despite that everyone we met was lovely. I helped my dad through a long intake, I unpacked everything in his room, gave him dinner, and tried to orient him to things around him. He was highly agitated and also very confused. He kept asking everyone the same questions over and over. It will be his dementia that will truly do him in with this rehab process. Yet I know I can't be there every single minute of the day to normalize his conversations and redirect his thinking and behavior. 

We met one of the doctors overseeing the rehab unit and he is wonderful. Originally from Brooklyn and has a wonderful demeanor, sense of humor, and truly engaged with my dad! My dad's nurses on the sixth floor were wonderful today and three hospital personnel came into my dad's room today and told my dad that they have been observing me all week. They can't get over everything I do for him and they wanted him to know how lucky he was. Honestly this reminded me a lot of the feedback I used to get with Mattie. But like back then, I always perform my caregiving and advocacy roles unaware of those around me. It is funny how quickly hospital personnel can size up families. I may not have made any friends on the 6th floor, but I do think they respected me for what I was able to accomplish for my dad. I am quite certain without my aggressive advocacy, he wouldn't have gotten the pacemaker inserted on Friday or been admitted to in patient rehab today. 

Monday, March 7, 2022

Monday, March 7, 2022

Tonight's picture was taken in March of 2007. This was along one of our adventures in Key West. We stopped at a place for lunch and outside the restaurant was this big blue car with a crawfish on top of it. You can see Mattie smiling and he thought this was absolutely hysterical! Mattie was fascinated by anything with wheels from an early age, and this car was truly over the top. 

Quote of the day: Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. ~ Khalil Gibran

I can try to describe my day but it was so over the top that it is truly hard to believe what I am reporting is real. On Sunday, I wrote to the director of the inpatient rehabilitation facility at my dad's hospital (because after pacemaker insertion, my dad is too debilitated to return home right away). I only got this contact because I wrote to one of the administrators I met during our trip to the ER on Thursday afternoon. This woman is incredible and since my dad has been admitted I practically write to her daily. Without her I would be LOST, and therefore so would my dad. 

Any case, the director of the rehab unit responded to me on Sunday and we met with her at 9:30am. I made it clear that my dad wasn't going to a nursing home and that he needed to be reassessed to qualify for an acute rehab stay at the hospital. She listened to me and told me she would send physical and occupational therapists back for a consult. She also mentioned that a bed was opening up tomorrow in her acute rehab unit, so in my mind I had to find a way to keep my dad in the hospital one more night until they could wheel him from one floor of the hospital to the other. Makes sense, no? 

The problem was the doctors in my dad's unit wanted to discharge him today and push him out. They sent in a case manager to find a place to transition my dad to in the community. I disliked the case manager intensely and I told her she is supposed to advocate for us and help me. She did not care for that. All she kept saying is my dad is leaving the hospital today and there is NO available beds in their rehab for him. She did not know that I spoke to the director of the rehab earlier and that I KNEW a bed would be available tomorrow. So I informed her. I also told her I thought it was in the healthcare team's best interest to think creatively to find a medical reason to keep my dad one more night. Mind you my dad has a HOST OF reasons why medically he needs to stay. You just have to think beyond what your monitors are telling you. Honestly they agitated me to NO END today. 

In the process of all of this, I wrote to the chief of nursing today. I wrote because I wanted to provide commendations for the person in the ER who has been helping me since Thursday. While writing about this, I mentioned some of the issues I have been having with getting my dad placed into her rehab facility. She asked how she could help. So I told her and she then began looping people into our emails. 

One person, who is the head of case management had the audacity of accusing me of suggesting that the hospital commit Medicare fraud! Honestly? I pushed right back at him and said I never implied such a thing and you don't have to look very hard to see that my dad has many MEDICAL reasons for continued admission. I never heard back from him. I am telling you I made NO FRIENDS today at the hospital. 

I was so frustrated that I called the director of the rehab back again. I learned from her that she was working with all the players I was emailing throughout the day. That she has the ability to make this all happen and she is the one who CAN medically justify his stay. Thank GOD someone with a brain and with some compassion. Because the two alternatives presented today was either to take my dad home or get him transferred by ambulance to a facility about 50 minutes from my home. Neither were options in my book! My dad has a great deal of pain in his spine and moving him is close to impossible, which is why I can't take him home and I also can't imagine him surviving an ambulance ride. 

As if I wasn't balancing enough, my dad has major issues with a rash all over his body. He is reacting negatively to all the pressure sore pads they have put on his body. He must be allergic to the adhesive. But no one cares, they won't remove these pads, which are being used prophetically, thankfully he has no bed sores currently. All day I have been lathering him with cortisone creams to help with the intense itching. 

I can tell the unit is fed up with me and my dad's nurse today was incompetent. At one point my dad completely soaked the bed with urine, and I felt they really did not want to help me. They did, but again it wasn't pleasant. Is this what the best possible healthcare is like? 

I feel for any patient who doesn't have a Vicki fighting for them. Patients may have a family member with them, but not everyone understands the system like I do. I think even working as a professional healthcare provider in the system doesn't qualify you for surviving the system as a patient. It takes special skills to understand how the system works and it takes great diligence and persistence to get things done. As I learned with Mattie, the advocate with the loudest voice in healthcare, gets the care that is needed. Sad, but the reality! 

Sunday, March 6, 2022

Sunday, March 6, 2022

Tonight's picture was taken in March of 2007. We were in Key West with Mattie and we came across this exhibit with sting rays. Not only did we get to see them, but we learned about them and even got to touch them. As you can see Mattie wanted me to do it, but was eagerly watching and waiting to see what would happen. 

Quote of the day: Constant attention by a good nurse may be just as important as a major operation by a surgeon. ~ Dag Hammarskjöld

Tonight's quote really speaks to me, mainly because I know how important nurses are! They make hospitals run effectively and efficiently. However, not all nurses are created equal. I learned that once again this week with my dad in the hospital. For the past two days, my dad's nurse, Lisa, has been incredible. She is a more experienced nurse and her expertise and compassion really make her stand out. Today I felt like I had an advocate with me and like a good nurse, Lisa checked in on us often. She counseled us to get my dad started on Tylenol for pain, and even helped us get him out of bed on my request. 

Of course no morning would be complete without a visit from the hospitalist. She was on good behavior today and I think she is learning that she messed with the wrong family member. As I have been right about when my dad would get his procedure done and also that he is not ready to return home. However, I made it very clear to Lisa and the hospitalist that I did not want my dad to be released to a Skilled Nursing Facility (SNF, which sounds like SNIFF when pronounced). Lisa was actually as surprised as I was that the PT and OT recommended a SNF in writing, when it was our understanding verbally that the recommendation was to go to inpatient rehabilitation. 

After I fed my dad breakfast, I wrote a long email to the director of the inpatient rehabilitation facility of the hospital. Lisa gave me the buzz words.... return to baseline. Which is a very good term, because my dad was ambulatory, could feed himself, and do some things for himself prior to admission. So the goal would be to get him back to the abilities he came into the hospital with on Thursday making it possible for him to return to the community. 

Thankfully the director of this rehab program wrote right back and I am meeting with her on Monday at 9:30am. Which is good news, I hope! Later in the morning, my dad was checked out by a cardiologist. This fellow in my opinion looks at the world with blinders on. He maybe great with the heart and all things heart, but can't possibly connect what my dad went through to quality of life. That is beyond his scope of practice or area of interest apparently. However, he did agree to send physical therapy in today to work with my dad. Guess what? IT NEVER HAPPENED! 

By 4pm, I was tired of seeing my dad in bed all day. So I rang for Lisa and between her, me, and Peter we got him out of bed and in a chair. Just being out of bed mentally makes you feel better. While he was in the chair, I gave him a sponge bath and changed his hospital gown. So he looks and smells a ton better. 

My dad continues to have back and neck pain. I know with him it just takes time, as he has had stenosis of the spine for decades. However, I have to be realistic and determine whether I can manage my dad and his care if he can't go to an acute rehab. This morning alone it took four of us to clean him up after an explosive bowel movement. I could tell the nurses felt they got their workout from him. He isn't an easy patient by any stretch of the imagination. 

Lisa however made the day much more manageable. I told her so and I already wrote a glowing commentary on her and submitted it to the hospital, because she deserves a gold star award. Lisa recently moved to Virginia from Los Angeles, like my parents. She cared for hundreds of COVID patients during the peak of the pandemic and she told me the toll it has taken on health care workers. In fact, it sounded like PTSD. I could tell she did not want to talk about it because she did not think I would understand. Which of course I don't know what she exactly experienced but I do understand medical PTSD. I told her about Mattie and my caregiver role, and once again I was instantly connected with another trauma survivor.