Category: medical care

Paco update

Linda’s prompt for Stream of Consciousness Saturday last week was to base the post around a word that contained -igh. My thought was to write a post beginning with “Sigh” about my father’s continuing health struggles, following up on two previous SoCS posts.

The day after I wrote the post linked above, Paco’s condition deteriorated and I made the decision to send him to the emergency room. After the initial check-in, I was allowed to be with him. The ER team was very thorough and found that he was dehydrated and had three new fractures in his lumbar vertebrae. After some IV fluids, he went back to the rehab facility by ambulance at 3 AM.

I caught a nap and was very grateful to learn that my older sister had moved up a planned visit and would arrive that afternoon. She spent a lot of time with Paco on compassionate care visits while I worked out a lot of logistics. It turned out that a rehab room opened up within his senior community; the place where he currently was in rehab was a sister facility in a nearby city. Paco was set to move back on Friday and I spent a lot of time packing up things in his assisted living unit, some to send up to his rehab room there and some to bring back to our house as we had decided to give up his place in assisted, as we know he won’t be well enough to return there any time soon – and may never recover to that point.

The plan on Friday had been that our family would finish clearing out his place in assisted and help Paco to get settled into rehab, but we arrived to find that someone in the assisted wing had tested positive for COVID, so it had to go into lockdown. Fortunately, this didn’t affect Paco’s move and he arrived safely via medivan. I signed yet another cache of documents and was allowed a short visit to help him get settled.

Unfortunately, our hard-won rights to expanded compassionate care visits got lost in the bureaucracy with the impending holiday weekend adding another layer of complications with so many staff away on vacation. I was able to get permission for some extra visiting time over the weekend but face another round of changing personnel, location, rules, etc. this coming week.

Meanwhile, Paco is confused and exhausted. The silver lining is that his pain level is generally low.

The big question mark remains how much recovery is possible in regards to daily living functions. I don’t know if the rehab team will be able to make a valid prediction or not.

It may be a situation of wait and watch and work and hope and pray and see where we end up.

One-Liner Wednesday: a helpful hint

Helpful Hint: A good, multi-layered cloth mask makes an excellent eye shield if you need to try to sleep under bright lights. (discovered during an emergency room visit with Paco Sunday night/Monday morning)
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Join us for Linda’s One-Liner Wednesdays! Find out more here: https://lindaghill.com/2021/06/30/one-liner-wednesday-laying-down-on-the-job/

SoCS: ups and (mostly) downs

When I saw that Linda’s prompt for Stream of Consciousness Saturday this week was “up/down”, I knew that I needed to write a follow-up to last week’s SoCS in which I talked about my father (Paco) and his recent fall, hospitalization, and move to a rehab facility.

When I wrote last Saturday, it seemed that, though there was a long way to go, things were trending up.

Everything changed on Sunday when new complications arose. For various reasons, I will not even attempt to elaborate.

Let’s just say it has been a very “down” week.

We are working hard at untangling a mass of symptoms and trying to keep him safe and comfortable, but it’s an uphill battle. I know he is 96 and so, very vulnerable and prone to complicating factors but it is still so hard to deal with.

And to watch.

I know intellectually that I am doing all that is possible for me to help him and his care team, but my heart aches because I can’t make it better.

We have no idea what the outcome will be. It’s not just one day at a time, which is Paco’s favorite saying. It’s one hour at a time. One moment. One more early morning phone call telling me that he fell again during the night.

There are up moments here and there. When Paco easily remembers my name. When he gets to enjoy a slice of blueberry pie for dessert at lunch. When he manages to make a little joke with his aides.

I had planned to go to vigil mass today at a friend’s church, but was too tired to make the drive, so I went to a nearby church instead. I was blessed to see Sister A. there. She had been one of the stalwart visitors during my mother’s final illness, a span that stretched over two years. Because of the pandemic and other circumstances, I had not seen her in months. I was able to fill her in on Paco’s condition and she assured me that she has been lifting him up in prayer.

After such a “down” week, that assurance was a much-needed balm.

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Join us for Linda’s Stream of Consciousness Saturday! Find out more here: https://lindaghill.com/2021/06/25/the-friday-reminder-and-prompt-for-socs-june-26-2021/

broken

I think I might be broken.

Last week was rough as I wrote about for Stream of Consciousness Saturday yesterday.

Today is Father’s Day in the United States. I was able to speak briefly with my dad this morning, but he was pretty confused about handling the phone and they were about to change one of his dressings. There aren’t visiting hours until Tuesday evening, so there is no chance to see him. We did drop off a card yesterday and he has gifts and cards already from my sisters.

He can’t really remember that it’s Father’s Day anyway…

Meanwhile, it is also Father’s Day for B here at our house but I’m having trouble focusing enough to plan dinner or much of anything else. It’s taking effort just to make my eyes focus to write this.

I did sleep quite a bit last night after very little sleep the night before.

Somewhere in the midst of all of this, we went out to dinner for our 39th wedding anniversary and opened some cards. Originally, we were going to go away for a couple of days. We still might, once I get through the initial care conference for Paco on Tuesday. I need to write notes and questions to prepare for that. Oh, and also get ready to deal with all the insurance folks.

Maybe tomorrow.

Maybe I won’t feel so broken then.

SoCS: and the hits just keep on coming…

No, this is, unfortunately, not going to be a post about what’s on the Top 40.

I have been scarce/non-existent here at Top of JC’s Mind for the last week because my 96-year-old dad, known here as Paco, fell in his assisted living unit last Saturday. B and I had visited him in the 1-1:30 visiting slot, but he fell about 3:00. We think he was in the kitchenette but aren’t sure. Although he hit the floor pretty hard, he managed to get himself up and over to the couch where he called for help.

He has had a few falls before, but he hit much harder this time. His left side took the force of the fall. He was sent by ambulance to the local hospital where the extent of his injuries was revealed and he was admitted with a bump and cut on his head – luckily no concussion – bruises and contusion on his left arm and elbow, deep bruising on his left hip – luckily no break – a cracked left rib, and two wing fractures of back vertebrae.

The fall, pain, unfamiliar surroundings, etc. also worsened his cognitive condition. Paco already is suffering from dementia and this fall completely unmoored him. On Wednesday, he was stable enough to transfer to a rehab unit. We are hoping that his cognition will improve as he heals and gets stronger. It’s a much calmer and more stable environment than being in the hospital.

Tomorrow is Father’s Day in the United States and it’s hard because we won’t be able to see Paco as visiting in the rehab facility is extremely limited.

The other hit that our family is trying to absorb is that we just got word that a member of our extended family has been diagnosed with metastatic cancer. She is only thirty. She is strong and fighting but everyone is devastated.

And the hits just keep on coming…

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Linda’s prompt for Stream of Consciousness Saturday this week is “hat/het/hit/hot/hut.” Join us! Find out more here: https://lindaghill.com/2021/06/18/the-friday-reminder-and-prompt-for-socs-june-19-2021/

Granddaughter congratulations

Congratulations to granddaughter ABC who is turning four years old! She is a few weeks away from completing nursery school and will be entering Reception, the UK equivalent of US kindergarten, in September. She is reveling in the return to full-time in-person school, loves the parks and the garden, is learning to read, has a vivid imagination, inherited her parents’ musicality, and loves being a big sister, at least most of the time.

Congratulations also to granddaughter JG, who at not quite ten months old, is walking on her own. Watching the videos of her toddling reminds me of her mother, my firstborn E, who also stuck her tongue out when she was first walking on her own. I’m not sure if it is a sign of concentration or if it somehow helps with balance, but it certainly seems to be an inherited inclination. Also, adorable.

When we visited London in December 2019, we had planned to return in the spring, perhaps for Easter, and then for ABC’s third birthday, and in late summer for the birth of the new baby. E and her family planned to come visit us in the US for Christmas.

Due to the pandemic, none of that happened.

So, here we are, all fully vaccinated in upstate New York, but still not cleared for travel to the UK, missing another birthday. We’ve missed the entirety of JG’s babe-in-arms phase as she is now officially a toddler. And we still don’t know when we will be able to travel to the UK. They have been planning another easing of restrictions in mid-June, but now the even more virulent strain from India is spreading in the UK, so…

We don’t know about travel in person.

We do know that our love reaches them, even if our arms cannot.

Vaccinated and (mostly) unmasked

Shortly after I wrote this post, the US Centers for Disease Control and Prevention published new guidance regarding mask wearing/distancing among fully vaccinated people in response to newly published research findings.

The good news is that fully vaccinated people can stop wearing masks indoors with extremely low risk of contracting or spreading coronavirus. Mask wearing is still recommended in medical settings such as hospitals. Requirements to mask on public transport remain in effect, as do any mandates or policies put in place by state/local governments and businesses.

The bad news is that people who are not fully vaccinated might also stop wearing masks – and wouldn’t stand out because others would just assume if they weren’t wearing a mask that they were vaccinated – and so could be exposing themselves and their contacts to coronavirus, which would drive up infection rates. This is not helped by states that have already dropped their mask mandates or never had them in the first place.

Some governors immediately dropped their mask mandates while others, such as Governor Cuomo of New York where I live, are reviewing the situation before making any changes.

Personally, I expect that I, though vaccinated, will not be making many changes in my mask behavior immediately. The few stores that I frequent are likely to keep their mask policies in place for now. Visiting my father in the health care building of his senior community will probably still require masking because, although they are vaccinated, the residents are still vulnerable due to their age and underlying health problems. If the state does drop the mask mandate, small businesses, such as hair salons and restaurants, may decide to let vaccinated customers unmask and could easily ask for proof of vaccination to give peace of mind to their employees and customers.

I am frustrated by the media commentary surrounding this CDC announcement. For weeks, commentators have been complaining that the CDC was too slow in changing its recommendations for vaccinated people and that it was a disincentive to get vaccinated. The CDC was waiting for additional scientific findings to be published before making changes, but, now that they have, the commentators are complaining that it happened too fast.

They are also complaining that the CDC guidance is confusing. It’s not. It is meant for use on an individual level and it’s very clear about what activities fully vaccinated individuals can do without masking/distancing and what activities unvaccinated people can do without masking/distancing. The CDC and the federal government are not the ones with authority to require masks in stores, churches, etc. State and local governments and businesses do that.

So, please, everyone, stop whining, learn about the recommendations from the CDC and the policies in place in your local area, and behave accordingly for the safety of yourself and others.

If you are eligible for vaccination but haven’t done it yet, make arrangements to do so as soon as possible so you don’t become seriously ill or pass the virus on to someone else.

Remember to be kind and respectful to others. Some vaccinated people will choose to continue wearing masks because they are immunocompromised and more susceptible. I know people with allergies who are continuing to mask outdoors to protect themselves from high pollen counts. Some parents of children who are too young to be vaccinated wear their masks to be a good example for their children. It is not your business to criticize someone else’s decision and masking is never a wrong choice when it comes to public health. In some countries, masks have been common for years, especially during flu season or when there are air quality problems.

The CDC recommendations rely on public trust. Unvaccinated people need to demonstrate that they are worthy of trust by following the public health guidance. Overall infection and death rates are down, but they will spike again if people don’t continue to vaccinate and mask/distance until they complete the vaccine process. A spike might not happen until colder weather drives more people indoors, but it won’t happen at all if we can get the vast majority of teens and adults vaccinated by fall.

The prospect of the epidemic phase of COVID-19 being over by fall is within reach, but only if people follow this guidance and get vaccinated.

Let’s do it!

Another Pfizer vaccine advance

Yesterday, the Pfizer/BioNTech vaccine against COVID-19 was granted emergency use authorization for children aged 12-15, extending the prior age range of 16+. These younger teens can receive the same dosage as older teens with similar effect. This is good news because all high school and most middle school students should be able to be protected before schools open in August or September 2021.

Pfizer and other vaccine suppliers are currently studying the proper dosage for younger children. These eventual approvals will probably be split into several groups, 5-11-year-olds, 2-4, and 6-23 months. The research with these younger children takes longer because they have to start with lower doses and increase to find the lowest possible dose that will still mount a strong immune response. Until these children can be vaccine protected, they need for all the teens and adults to get vaccinated to reduce their chances of being exposed. While young children tend to be less sick than adults if they get infected, they can become very ill, even fatally, and suffer long-term symptoms. Even if they have mild or no symptoms, they also keep the community spread of the virus going, which means that the pandemic phase cannot end.

Canada gave authorization for 12-15 for the Pfizer vaccine last week. It’s expected that Moderna will be doing so soon. Pfizer has also applied for full authorization in the US, a process that will take several months to complete. I am especially pleased with the success of the Pfizer vaccine because data from spouse B and daughter T are part of the research findings that are showing how safe and effective the vaccine is. Monitoring for them continues to see how long immunity lasts and whether boosters are needed. I also continue to participate in the trial, but, because I was originally part of the placebo group, I didn’t receive the vaccine until February so my data are not useful for the longevity factor, although I could become part of a test group for boosters in the future if warranted.

Internationally, vaccine companies are continuing their research and manufacturing, but distribution is neither fast nor broad enough. India is particularly tragic, with widespread disease, scant treatment, and, despite being a major manufacturer of pharmaceuticals and vaccines, very little vaccine protection among its residents. President Biden has joined growing calls for vaccine companies to suspend their patent protections so that countries around the world can manufacture vaccines for their regions. This would also entail making available the raw materials, supplies, and expertise to manufacture the vaccines, some of which require new techniques such as mRNA.

I feel an odd mix of hope, dread, and sorrow. The COVID rate in New York State where I live is very low now. We are gradually relaxing some of our restrictions and I am planning to go on a writing retreat later this month. This summer, we think we are finally going to be able to travel to the UK to visit daughter E and her family and get to hold our granddaughter JG for the first time, although she is almost walking on her own and may not want to stop long enough to be held by the time we can get there.

At the same time, there are still people sick and dying in my state and exponentially more in other states and countries. It’s frustrating because we have treatment tools and vaccines now that we didn’t have a year ago but they aren’t reaching all the people that need them. What’s most frustrating is people who do have access but don’t take advantage of the opportunity, letting their fear, ideology, contrariness, or sense of invincibility stand in the way of personal and public health.

Please, everyone, continue to do all that is within your power to end the pandemic. This will look different depending on personal and community circumstances, but mask in indoor public spaces, distance when appropriate, be careful about the size of gatherings, stay home if you are sick, vaccinate when it’s available for you, keep up to date on the newest public health recommendations.

Show your respect for others and do your best to protect them. Pandemics are, by definition, phenomena that affect us all. It takes all of us working together to end one.

post-vaccine life

With my immediate family in the US vaccinated against COVID-19, we are inching our way back to a more interactive life while still following the national and New York State guidelines.

The most important thing that has happened for us personally is a greater ability to see my dad, known here as Paco, who lives nearby in the assisted living unit of his long-time senior community. After months of not being able to visit, we can now go to his apartment, albeit in pre-arranged thirty minute slots. I can also sign him out to go for a car ride; previously, he was only allowed away from the unit for medical care.

This has meant that I can see him more times per week and that I can take him out for treats. Last week, we went to an ice cream stand in the afternoon. This morning, I was able to bring him to get a doughnut and coffee. We are still being cautious about indoor spaces, so I don’t bring him into buildings. We enjoy our treats in the car or at outdoor tables.

The best thing, though, was that my older sister and her spouse were able to come visit for a couple of days last week. They hadn’t been able to visit since last summer. They live in Maryland and couldn’t enter New York until recently due to our travel/quarantine restrictions. Because of the vaccines, those have been relaxed. With all of us vaccinated, we were able to have everyone to our house for dinner. B made lasagna from Nana’s recipe, homemade Italian bread, sautéed asparagus, and apple pie. It was all delicious – and extra heartwarming to be together after so many months apart.

We are also starting to work our way back to activities like dining indoors. I’ve had one lunch and one dinner inside restaurants. We wore masks when not eating or drinking and the tables were spaced so that we weren’t very close to other diners. We are likely to continue doing carryout more often than dining in for a while, especially because dining in most likely involves having to make reservations while carryout is easier to do spur-of-the-moment.

There was just a national policy announcement clarifying mask use recommendations for outdoor events in light of vaccinations. Vaccinated people can exercise, socialize in small groups, and eat outdoors without needing to wear a mask. They should, though, continue to mask if they are in a large group setting, such as a sporting event or concert where the crowd would be close together for extended periods. It is good to have this clarification, but it won’t make much difference for our family. New York has had a mask mandate in place for over a year, but it was adapted in order to deal with the circumstances. Given that we don’t live in a congested area, we were already accustomed to taking maskless walks in our neighborhood. If we stopped to talk to someone, we would just keep six feet of distance between us. Still, it was good to see that there are now different recommendations in place for vaccinated and unvaccinated people. Perhaps it will serve as motivation for people who haven’t yet been vaccinated to arrange to do that. In many locations, you don’t even need to make an appointment in advance.

If people need more motivation to get vaccinated, they can switch on a news report from India to see the horrific toll that the virus takes when it sweeps through an unvaccinated population. The infection and hospitalization rates are staggering. A new variant has emerged and there are so many deaths that the system to handle them is overwhelmed.

This virus remains very dangerous, capable of inflicting serious illness and death. The vaccines are safe and very effective. Everyone aged sixteen and over in the United States has access to vaccine and should be immunized unless there is a personal medical issue that precludes it. If you don’t feel personally vulnerable, remember that, even if you yourself don’t get severe symptoms, you could pass the virus on to someone else who could become very ill or die.

The only way to end the pandemic is for there to be large-scale immunity everywhere. Every effort we make, whether it is our individual vaccination and precautions or our large-scale efforts such as sending vaccines, treatments, and supplies wherever they are needed around the world, is part of what is needed to end this.

And remember: People taking vaccines approved for emergency use are not “guinea pigs.” The “guinea pigs” are the hundreds of thousands of people like me and my family who volunteered to be in clinical trials. (B, T, and I are all part of the Pfizer/BioNTech phase III trial. I’ve posted about it a number of times over the past months.) Government agencies and the pharmaceutical companies are continuing to collect data and have affirmed that the dangers of contracting COVID are much, much greater than any side effects of the vaccine.

Please, everyone do your part to keep yourself and others safe. Vaccinate, mask, distance, and practice good hygiene. Pay attention to credible medical and public health sources. The rewards of being able to safely gather, to give a hug to a loved one, to see a friend’s smile are simple, yet profound.

We just need to work together to make it possible for everyone, everywhere.

vaccine update

Here in the United States, we are continuing to roll out coronavirus vaccines as quickly as possible, although there are a few snags.

The biggest is that the one-shot Johnson & Johnson vaccine is on temporary pause, due to six cases of a rare blood clotting problem that have been reported among women aged 18-48 within two weeks after vaccination. Given that over six million doses have been administered, the percentage affected is tiny, but the two agencies in charge are being cautious, especially as a small number of similar cases have been reported in Europe in connection with the Oxford/AstraZeneca vaccine, which, like the J&J, is an adenovirus-based vaccine. The pause is allowing them to gather and assess data. Additional cases may surface because of the attention this is receiving in the media. It also lets physicians know to ask about vaccine status when a patient presents with blood clot symptoms. This is important because vaccine-related blood clots call for a different treatment regimen. The hope is that the J&J vaccine will again be cleared for distribution within the next two weeks.

The public reaction has been mixed. Some people say that this pause shows how closely public health officials are tracking the various vaccines and their effects, which raises their confidence level. Others are worried that this means the vaccines weren’t sufficiently tested. A few who have received the J&J vaccine are panicking.

As someone who has been involved in vaccine trials, currently the Pfizer/BioNTech coronavirus vaccine but previously trials for flu, adult RSV, and pneumonia vaccines, I can attest that researchers are very careful in how they conduct trials. However, when you have a side effect that seems to appear in such a small number of people, you are unlikely to find it in a trial of thirty thousand people. If it turns out that the blood clot complication does occur, a person is more likely to be struck by lightning than to develop a blood clot after J&J vaccination. I hope this would calm anyone who is panicking, although people often fear rare events while ignoring those that are much more likely to impact them.

I admit that it boggles my mind that, with over thirty-one million known COVID cases in the US and over 565,000 deaths, people would fear an extremely rare side effect more than the virus itself. There are still about 25% of adults who say they will not get vaccinated, which raises the prospect that we won’t be able to stop community spread and end the pandemic because the pool of susceptible people will remain too large. Also, remember that some people who have been vaccinated may still be infected, but their chances of being severely ill are greatly diminished. Still, the way to end the pandemic is to have 85-90% of people vaccinated so that cases of the virus can be contained rather than spreading throughout the community.

It will help when those younger than 16 can be vaccinated. Pfizer has currently asked for permission to add 12-15-year-olds to those eligible after conducting a trial with that age group. Pfizer, Moderna, and others are also conducting research on the best dosages for younger children.

Meanwhile, research is continuing into how long immunity from the vaccine will remain strong. Spouse B and daughter T who received the Pfizer vaccine last August as part of the phase III trial are part of the effort to answer that question. The six month figures showed that immunity remained strong but they will be followed for at least two years to see how that may change with time. The Pfizer CEO Albert Bourla has said that he thinks a yearly booster is a possibility; they have begun studying this with phase I trial participants. We’ll see when B and T have their one-year follow-up in August whether or not they will have extended the booster dose study to phase III participants.

It is my sincere hope that by then we will have been able to fly to the UK to visit our family there and to meet granddaughter JG in person. While we are doing all we can to make that safely possible, it is frustrating to still see so many people not willing to cooperate with public health measures to keep themselves, their loved ones, and their communities safe using masks, distancing, limits on gatherings, vaccines, etc. to end the pandemic.

Yesterday, there was a Congressional hearing at which Dr. Anthony Fauci, one of the leading health officials in the country, was testifying. Rep. Jim Jordan illustrates the dynamic that has resulted in the unfortunate and dangerous politicization of the pandemic. This is a public health issue, not a “freedom” issue. Living in a free society does not mean that everyone is free to do or say whatever they want; we each have a corresponding responsibility not to cause harm to others or damage their rights and human dignity.

This brings me to my last point. The pandemic affects the whole world. Under the prior administration, the United States suffered terrible losses and did not contain the spread of the virus. Under the Biden administration, the US is making progress and has taken some steps to help the rest of the world in the fight against COVID. The US is now part of the COVAX initiative to help distribute vaccines to lower-wealth countries, although this is just getting underway. It has also sent some of its stockpile of the AstraZeneca vaccine, which has not yet been approved for emergency use in the US, to Canada and Mexico where it has been. While I expect the US to retain doses of approved vaccines as boosters, I’m hoping that once everyone who will accept the vaccine in the US has been vaccinated that we will distribute all the other doses to countries that need them, along with whatever other logistical and medical help is needed.

We can never end the pandemic until the virus has nowhere on the globe where it can run rampant. To me, this is a moral imperative. Others may be motivated by economic self-interest. Whatever the reason, it needs to happen.