The Tom Report
Tom and Virginia in their garden, June 7. Photo: Virginia Thompson
On Tuesday, March 24, Tom Shaffer of Rutgers Avenue in Swarthmore started feeling sick. What follows is an account of his illness and subsequent recovery, edited from near daily Facebook posts by his wife, Virginia Thompson, while she was at home in Swarthmore with their two kids, both in their twenties. At first she called her posts “Update on Tom,” but after a while, she started titling them “The Tom Report.”
Although not properly diagnosed at first, Tom was eventually confirmed to have COVID-19. The family is sharing their experience to educate the community about how serious the virus can be.
APRIL 1
Sharing our personal medical situation: My husband Tom, who has been sick since last Tuesday, was taken by ambulance to Crozer Chester Medical Center on Sunday night after his breathing became extremely labored and he fell twice, unable to support himself. On Monday, the report was pneumonia in both lungs and likely COVID-19. Yesterday, the COVID results came back negative.
Today, mixed results: Good news that blood oxygen levels are in the 90s; they were at 50% when he was admitted. However, they found more pneumonia in his lungs, so he’s on more oxygen (sounds like a wind tunnel when he talked with me on the phone) and more antibiotics and more drugs. They may also want to re-test for COVID since the results are only 70% accurate. So we are remaining in our self-quarantine. Tom anticipates remaining in the hospital for a while — of course, without any visitors.
I am sharing this for several reasons:
A negative COVID test may or may not be a negative result, per the accuracy rate provided by Tom’s doc.
Also, Tom is not in a particularly high-risk group. How or why he got pneumonia and/or COVID is completely unknown.
Thank you all, and much love!!
Virginia
APRIL 2
Today, Tom had a second COVID test, which was also negative. He is no more able to breathe than he was when he went in on Sunday. Even with oxygen, antibiotics, and whatever else they are giving him, he struggles for each breath. I haven’t been able to eat nearly anything. I feel tied to my work laptop, my phone for texts and calls, and my home computer for managing mail.
With all my love,
Virginia
APRIL 3
I spoke with both the nurse caring for Tom today and Tom himself. Our children also got to hear him, so that was good. He was transferred to the ICU yesterday, where he is getting more oxygen.
The doctor believes the CAT scan shows a COVID-type infection; the nurse said he was swabbed a third time, but Tom said he wasn’t. His primary physician called me and said he had reviewed all 50 pages of records on Tom from Crozer, and the information indicates Tom likely has viral pneumonia. They will take a scan of his lower left leg, which seems to be swollen.
Tom sounded a little bit better. He didn’t have to halt after each word to get breath. He also said he was able to brush his teeth last night and didn’t lose his breath doing so. That is the best news I’ve heard so far!!
Love,
Virginia
APRIL 4
We spoke with Tom around noon, and he was actually sitting in a chair and had been for about an hour! He was able to breathe without much of a struggle. As we hung up the phone, he was about to be served his lunch, presumably also in his chair. He does have a blood clot in his leg, so he is getting blood thinners.
He reported that there are discussions of moving him back to a regular floor soon. It’s always an interesting mystery where he will be located when I call. Sort of “Where’s Waldo, Hospital Stay” version!
Another interesting tidbit: Tom reported that one doctor is still convinced he has COVID and wants to do a third test on him. The other doctors disagree. Stay tuned on the exciting tales of “To Test or Not to Test...”
All of you have been encouraging me to take care of myself so that I, too, don’t get sick. I am trying to do that but am finding it very difficult.
All my love,
Virginia
APRIL 5
Tom was taken out of ICU last night at 11 p.m. I hope that is a good sign and not too quick of a release.
APRIL 6
When I spoke with Tom late morning, he said he was feeling a little bit better. When I spoke to the attending physician, she said he has been a real trooper and very patient (not a surprise). She said she would work with the PT team to see if he can get a little more movement into his day. He has been stabilizing, with no recent fever, but still requiring a breathing mask. They are treating him for both viral and bacterial pneumonia, and they did use one of those drug combinations you hear about in the news. She said that his recovery is “day to day.”
Love, Va.
Update to today’s update: The hospital just called and said Tom’s oxygen has dropped, so back into the ICU.
APRIL 7
Last night was perhaps the most frightened I have been through this ordeal. However, as some of you said, the ICU is where Tom needs to be right now. We got generally positive reports from two different healthcare providers in the ICU today. He held his own overnight, not needing to be intubated. They hope they won’t need to but are ready. As the doctor said early this morning, he’s not out of the woods yet. He is not in pain. But any time he moves at all, his oxygen level drops, so we can’t talk to him on the phone. But the nurse this afternoon was going to share that we called and send our love.
Love, Va.
APRIL 8
What seemed like a good day until a few minutes ago has now turned into oxygen dropping and Tom needing to be put on a ventilator.
The third test came back positive, so he does have COVID-19.
Oh, God, this is such a horribly frightening time. Just as I thought today was going well, the virus turns on him again. This is maddening! I am so scared! And no one — not me, not anyone — can do anything about it. Not even visit him in the hospital. I am just speechless and numb.
Va.
APRIL 9
Last night around 9 p.m., the nurse said Tom’s oxygen level was much better; he had a feeding tube put into his belly; they gave him a diuretic; his fever was declining (I thought the fever was gone long ago); and he was resting, sedated but responsive.
APRIL 11
Apparently Tom is a little less sedated today, and when the nurse asked if he should tell me that he is doing okay and hanging in there, Tom indicated yes. The nurse also said they are finding that COVID patients tend to stay on ventilators longer than they do for other reasons. So that is good information to help keep me a little sane.
This afternoon I watched the last half of an August 2018 Phillies-Marlins game that we won with a Mikael Franco walk-off homer in the bottom of the ninth. Tom would have remembered the game if he were watching it with me. But since I didn’t remember, it provided a little mindless excitement while I was waiting for the hospital to call me back with a report.
Love, Va.
Caroline brings clothes for her dad to wear at Fair Acres. Photo: Virginia Thompson
APRIL 13
Seems like there was a little backsliding today. Pneumonia seems to be a bit worse. They have tried to go down on the ventilator level, but every time they try it, Tom’s oxygen level goes down, so it will be a very slow process.
Tom went into Crozer two weeks ago last night. What a hell of a ride it has been! What a terrible hell of a ride. I need to just hang on until some good news comes along. I am so very sad and scared.
Love, Va.
APRIL 14
I call the hospital in the late afternoon each day. It seems like a good time because they’ve had the morning to assess and do whatever, and then they can see how he has been reacting to things.
There hasn’t been any real change today. He is not on antibiotics now, though he had two full courses, and they watch every day to see if there is any new bacterial infection. So far there hasn’t been. They take an X-ray every day. The X-ray today was the same as yesterday’s.
Tom’s doctor said there is no magic bullet. They are managing day-by-day and going by what Tom’s body can do. They are keeping him quite sedated so that he never gets so awake that he would yank out the ventilator.
As though I don’t have enough stress, the rehab place where Tom’s mother is called me today and said she was found on the floor. When asked why she was on the floor, she said she was trying to get into her wheelchair to go to the store. Oh, and she is positive for COVID.
After my workday ended, I drove up to the college and walked around a bit to get a different view of the world. It was lovely. But I have to say I am so totally paranoid coming within even 50 feet of anyone that I didn’t stay very long. Just did a little loop, admired the pretty flowers and trees, and drove home.
Love, Va.
APRIL 16
A very small snick of good news today. They have had the ventilator setting down to 45. Apparently that has gone well. If he does well overnight (please, please, please, please, please!!), they will take the next step with the ventilator. Dr. Murphy stressed Tom is still not out of the woods. These are good signs, but his lungs are the same.
All my love, Va.
APRIL 17
It was a late report from Tom’s doctor today. He apologized and said it was very busy there today. I can’t imagine what the ICU (where only COVID-positive patients are) is like these days.
Tom did well on a ventilator rating of 45. This morning they tried him on pressure-supported breathing, but he vomited. They changed his antibiotic to a more specific one, reflecting what they found in his blood.
I asked about the clinical trials going on now of Remdesivir. Crozer isn’t doing the trials, but Dr. Murphy also said that Tom wouldn’t be a candidate for it, though he admitted being vague on the criteria.
I thought you all might be interested in my average day (every day is the same, frankly). I avoid real news, watching local news only for the sports and weather. I am typically a news junkie, but I can’t face any more reality. What I am watching is Jeopardy and then, three nights a week, episodes of The Big Bang Theory from 7:30 to about 10, when I go to bed. And then I get up all tense the next morning, trying to get through the day, and waiting for the afternoon daily call.
As always, my love to everyone.
APRIL 18
It has been an interesting day. Starting with a call from Tom’s mom’s rehab center telling me her last “covered” (by insurance) day is this Monday, April 20. If I want to file an appeal, “here is the number.” So I called, filed an appeal, and now I will wait to see what happens.
The good news is that they put Tom on the pressure-support setting on the ventilator and he has been doing well. While Dr. Murphy said Tom is still in critical condition, he did admit that there has been some positive forward momentum.
Love, Va.
APRIL 19
WOW!! Great news! They took Tom off the ventilator!!! He is breathing with an oxygen mask. Tom was able to say “thank you” but it is very painful to talk. Tom will stay in ICU tonight, where they will continue monitoring him.
But I am still very cautious. What if he doesn’t do well off the vent?
Love, Va.
APRIL 20
Tom’s oxygen levels remain good. He is breathing fast and taking small, shallow breaths, so they put him on a high-flow nasal canula and some morphine to relax his body a bit. Apparently he is pretty anxious about taking deeper breaths because it could result in coughing. I don’t know how alert he has been today; I forgot to ask the doc. There was some thought about putting him back on a ventilator, but they are doing the morphine and high-flow canula instead.
So not as much positive news as I had hoped for (especially mention of possibly re-intubating him), but I guess mostly the trend is still positive.
Love, Va.
APRIL 21
Things are going very well. It turns out that yesterday, when the doctor said Tom was anxious about taking deep breaths, he was not sedated. The doctor said he is in what they call “ICU delirium” and is a bit confused after over three weeks in the hospital. He asked about his timesheet. Anything he can remember from normal times is a plus, I believe. Now, will he remember the name “Virginia” after 33 years of marriage??!!
Tomorrow, assuming all continues to go well, he will leave the ICU. As the doctor said, step one is off the ventilator, step two is out of ICU, and step three is out of the hospital. We are moving forward!!
APRIL 22
Some of the many cards friends sent offering support. Photo: Virginia Thompson
Holy cow!! Great news! They are moving Tom out of ICU sometime today when they have a bed. His breathing is still a little fast, but he is on less supplemental oxygen. He doesn’t have any reserve in his lungs, so if he is doing anything (like eating), he starts breathing faster. The doctor said that they don’t know how much the lungs will recover from a serious COVID infection, but it should get at least somewhat better.
Then, we got to talk to Tom and see him on Facetime!!!!! His voice sounds much older, he asked where we are living now, what we have been doing. But he knows he has been in the hospital for a very long time and he apologized for causing so much trouble by coming down with COVID. We said, “Yeah.” He remembers I work for the EPA. He vaguely remembers working from home for his job at the county planning department. He was really excited and pleased to see us and talk to us.
The nurse told us they love Tom, that he is the sweetest person. The camera of the iPad was turned around to show all the medical personnel who were there, and they all cheered when they could see us too.
Love, Va.
APRIL 23
Not much new to report today, which is good. He is still in the ICU, but only because they can’t find a bed in the regular pulmonary area for him (because there are so many areas restricted to different types of disease). He is under the care of the pulmonary team, not the ICU team. Things are stable, he is eating some, but they are going to give him something to try to stimulate his appetite. The plan is to have him go to a rehab facility when leaving Crozer so he can get PT and OT that he needs.
So, we are all in tons of relief around our house. Frankly, I am glad he will be going to a rehab place, because rehab people know what to do and I do not.
With all my love, Va.
APRIL 25
I talked to Tom around 2 p.m. He thought it was Sunday. He told me he did a “boo-boo” last night. He thought he could get up and walk around his room. He fell down immediately when he tried. He said he didn’t hurt himself. Amazingly, the nurses, who apparently have generally been leaving him alone, came running right in and got him back into his bed. I asked him why he tried doing that, and he said, “I don’t know. I just did it. But now I know better.” I reinforced that he shouldn’t do that again. I guess his stubbornness helped him get through his health crisis, so perhaps I shouldn’t be too annoyed.
Love, Va.
APRIL 27
No rehab today. They are working on it. The rehab places apparently need to review the medical records, and they may need a negative COVID test. Tom reported a half-hour ago that he got a fourth COVID test today. I explained it may be because they need a negative result to send him to rehab.
Tom reported that he did 20 minutes of rehab today, three stints of sitting on the side of his bed of seven minutes each. But he said it was hard work.
Love, Va.
APRIL 28
Waiting for Rehab. UGH!!! This morning, Tom called me to say the doc had come in to say he would be going to rehab today. Tom was skeptical, as it turned out he should have been. Late today, the social worker called to say that Bryn Mawr Rehab said Tom would need to have gained more strength to go there. Taylor Rehab was able to take him, so they reached out to our insurance. DENIED. What??!! So the doc will do a peer-to-peer with the doc at the insurance company and see if it can be approved.
If none of this is approved, he will need to go to a nursing home. This is all very discouraging to me. The insurance company apparently believes Tom is capable of coming directly home. That would not be a safe setting for either him or us.
The system is very broken, but we all knew that before this.
Love, Va
APRIL 29
I spent much time today talking to the social worker, one of Tom’s doctors, the insurance company, an attorney, and others helping me. Dr. Vickers called me and said they were shocked at yesterday’s denial.
Another moment of excitement was that we couldn’t fully close our dishwasher. I called, and they were set to schedule a visit when they asked about whether anyone in the house had COVID or came into contact with someone with COVID. Even though Tom has been in the hospital over a month, I answered “yes,” which put me on the list they will not visit. Fortunately, Caroline realized there was something on the top rack preventing the rack from going all the way back, thus preventing the door from closing. VOILA!!
Tom said his lunch today was good. It was served hot for a change! He couldn’t really remember what it was, but it was good.
Love, Va
APRIL 30
Well, I am too tired to do a full report, as there was a lot of back-and-forth on Tom’s care. The peer-to-peer was denied because they said Tom isn’t strong enough yet for a rehab facility. Instead, the insurance is willing to pay for a stay in a nursing home to get stronger, then allow him to go to rehab. The social worker explained that she has had a number of patients do this, and it has worked well.
I am feeling very overwhelmed and exhausted from having to continue to fight for whatever the right thing is at this point for Tom.
Bill the nurse is trying to encourage Tom to move around more, and PT gave him some exercises. Bill says Tom doesn’t seem to want to do the exercises.
When I spoke with Tom, I strongly encouraged him to do any moving he can, even while in bed — move his legs, his feet, his arms. I explained that if he works really hard, and can move from bed to chair on his own, that may be enough to get him into rehab rather than a nursing home.
Tom also reported that BOTH COVID TESTS HE HAD IN THE LAST FEW DAYS WERE NEGATIVE!!!!
Love always, Va
MAY 1
Tom has been in the hospital since March 29. He missed all of April. He is starting to miss May. Today we decided on a nursing home for early PT to strengthen him. The facility will review his records on Monday and then give a decision. Then the social worker will contact the insurance company.
He is still on some oxygen, but less than before. He did report that sitting in the chair and doing his exercises exhausted him, and he couldn’t do any more. Baby steps are still steps.
Love, Va.
MAY 3
Another good day for Tom. We called him around 4, and he had been sitting in his chair since lunch.
He wrote down his mother’s phone number now that she has been transferred from COVID isolation to a normal nursing home room. I think it would be really great if they are able to talk to each other and discuss their respective situations.
Tomorrow will be the next saga in the nursing home escapades for Tom. Will they accept him? Will insurance approve? Stay tuned for the next exciting episode!!
Love, Va.
MAY 4
The exciting news first: Tom has been approved to go to a nursing home (Fair Acres, Delco’s nursing home), and insurance will pay for it! Well, for 10 days anyway. We chose Fair Acres because they do PT well and they have been transparent about their COVID numbers (very low, even for its size), and we didn’t trust the private nursing homes that had lots of available beds. I got some professional help on this decision, so please don’t nay-say it. I’ve got enough on my plate.
The other good news: Tom has progressed to real food (rather than puree, which I didn’t realize he was getting), and it tasted good to him! One of the nurses told Tom he has to practice swallowing; everything needs to be practiced. So he has some swallowing exercises to do.
Tomorrow morning I will get up and face the same paperwork demons I have grown to hate but recognize I must deal with.
Love, Va.
MAY 5
MOVING DAY!!! Tom was transported today from Crozer to Fair Acres nursing home!! Caroline and I went down to see him off, and we brought a bag of his clothes so he can perhaps get dressed. He sure looked better than when we saw him leave in an ambulance from our house on March 29!! He really appreciated us being there, and we were very happy to see him too! Some of the staff from his floor also came down to send him off.
Good news indeed!!
Love, Va.
MAY 6
Things are going very well at Fair Acres. He reports that everyone has been great; he has been very impressed with the staff and their helpfulness, their professionalism, and their work with him. He got swallowing therapy, PT, and OT. He walked with a walker (and a wheelchair behind him in case he needed it) two-thirds of the way down the hall and back. OT helped him get dressed (while lying down on the bed), but he didn’t really need help.
Love, Va.
MAY 8
Not too much news on Tom today. He stood at a table near his bed and played a game of Scrabble, standing for a minute or more at a time while he tried to find words. He couldn’t think of the word “Scrabble” for a moment while he was telling me this! One of the nurses shaved half of his face today, and a PT shaved the other half, so he is today clean-shaven for the first time in about six weeks.
I have hit the wall today. I am just sick of paperwork and everything being a big deal.
Love, Va.
MAY 11
Tom continues to make gradual progress. Over the weekend he was bored because there was no PT or OT. The weekend days without those services still count as two of the 10 days insurance approved for him.
Tom called me yesterday morning to wish me a happy Mother’s Day. And he remembered that my sister’s birthday is this week, though he was a day off.
Caroline made me a lovely, delicious Mother’s Day dinner of salmon, potatoes, and spinach. I had a half-glass of wine on Friday night with dinner, the first alcohol since Tom went to the hospital. It made me quite tipsy, indicating my tolerance for alcohol has dropped dramatically over the past month and a half.
Love, Va.
MAY 12
The nurse at Fair Acres is starting to prepare me for the reality that Tom will soon be home. She described how to care for his bedsore and says he should eat lots of protein to gain strength. While I am scared about the nursing responsibilities we will all need to practice, I am also very excited about his return to our nest. I look forward to the day when he can sit in the rocker on our front porch and can walk down the street with me, if even just a short distance. Not knowing how much his lungs will recover is the scariest and potentially saddest part of his recovery. But we are very lucky that he is recovering and that he is able to make good progress so far.
Love, Va.
MAY 14
Tom reports that he is walking with just a cane now!!! And he went up the four steps several times today. And, he talked to his mom for about 10 minutes. She asked where he has been.
Love, Va.
MAY 15
Tom will be coming home on Tuesday!! For those of you who are local (or feel like driving somewhere), we are planning to have a little parade (with everyone socially distant) down Park Ave. as I drive Tom home. I will have to let you know the time on Monday. I will come down Baltimore Pike, down Rte. 320, around the circle to Chester Rd. in front of the stores, turn right at Dunkin, and go down Park to Yale. So anyone who wants to cheer Tom on and let him know how much you all have been rooting for him, line up to yell “hello.”
Love, Va.
MAY 19
He is home!!!
Virginia organized a parade through Swarthmore to greet Tom on his way home. Photos: Caroline Shaffer
