I created this page as a means of keeping Family and Friends informed of Dad’s ongoing health issues. It’s not meant to be impersonal–but it is a way to conveniently and consistently provide communication to the people who love and care about Dad. After the initial post, I’ll add updates at the top to keep it easy to read “the latest” as things develop.
Comments are active. We will pass them on to Dad!
Sunday, November 17th, 8:00pm: Amanda and I went to Occupational Therapy with Dad yesterday. He did very well. Kelly and Mom say that the Physical Therapist is very impressed with Dad’s progress on so short a time. Evenings are difficult for Dad–the later it gets, it seems, the “foggier” he gets. I went up early this morning in time to catch him at the breakfast table. He was lively and chatty, if a bit consternated about his situation and the fact that he’s not allowed to move without permission or assistance. Kelly and Dean stopped to see him late this afternoon and report that he was OK, but tired.
Friday, November 15th, 10:00pm: Amanda and I stopped to see Dad on our way to Keeseville. He was in the lounge, alert, and knew we were half an hour late. He was very talkative and had no trouble getting out of the lounge chair and I to a wheelchair all by himself. We took him to his room for a visit. It was the best I have seen him since this ordeal began!
UPDATE: Wednesday, November 13th: Dad continues to be somewhat disoriented relative to his location and situation. But today it was determined that his infection is not responding to the broad-spectrum antibiotic that had been prescribed, and a different one is now at work. These things can have different effects on people with Dad’s condition. In brighter news, the staples on the sides of Dad’s head were removed today. And he had great sessions with Physical Therapy. Kelly took a picture and some video. Enjoy!
UPDATE: Tuesday, November 12th, 9:40pm Not a great day for Dad today. He seemed confused about most things and didn’t do well with Occupational Therapy. On the plus side, Mom will be getting caregiver training from both OT and PT staff beginning tomorrow.
UPDATE: Monday, November 11th, 9:00pm. Dad had a full day. Lots of work with Physical Therapy. Mom reports that he successfully put on a sock and tied his own shoe. (Trust me, this is a big deal!) Some fellow Rotarians stopped in to see him, and Kelly and Prescott dropped by around lunch time. Mom had to leave while Dad was napping in order to get home before the snow flew to hard. Dad awoke concerned that she was not there and called home to check on her. So sweet!
UPDATE: Sunday, November 10th, 7:30pm. Dad made a lot of progress today. He was asleep when Amanda and I arrived, so we let him rest. Kelly and Dean got there a little later. Dad woke up late morning and was attentive and conversational. Amanda and I left for a few hours. In the meantime, Dad ate most of lunch and walked with a walker barely assisted to the bathroom and back. He kicked everyone out of the room at one point so he could take a quick nap. Amanda and I returned on our way back to Potsdam and visited more with Dad. Mom brought him a radio in case he gets bored with just the TV. He also had a few visitors, which brightened his day. Amanda, Mom, and I left around 4:30. Dad decided to grab another nap before dinner.
UPDATE; Saturday, November 9th: 8:30pm. A good day. Not a great day, but not terrible. It has been an adjustment not just for Dad, but for us as well. We got used to the intense level of care in the ICU. I remarked to Kelly that the staff there were doting almost to the point of being annoying. The “sub-acute” facility at Meadowbrook is very, very nice; but the level of care there is more “casual” in comparison. And this is what you want from a facility that is supposed to be working with and empowering its residents to be as independent as possible. Amanda and I spent time with Dad this morning. Mom, Dean, and Kelly this afternoon. I just returned from visiting him again after dinner. He was resting peacefully, so I let him.
UPDATE: Friday, November 8th: 4:00pm. Dad was successfully transitioned to Meadowbrook in Plattsburgh for rehab and Physical Therapy. Mom and Kelly have spent time with him today. It’s been a busy day what with the transport and all of the “orientation” and interviewing with his new hosts. Amanda and I are leaving shortly to spend the weekend in Keeseville and check in on Dad as well. Updates will likely be once a day moving forward.
UPDATE: Thursday, November 7th: 3:30pm. Mom has left for the day–weather isn’t great and she wisely wants to be home before dark. The good news is that Dad is all set to be transferred to Meadowbrook tomorrow morning at 8:30! Mom will meet him there.
UPDATE: Thursday, November 7th: 10:15am. Dad slept fair last night. Yesterday was not good–they detected an elevated white blood cell count and have traced that to a urinary tract infection for which Dad is now getting antibiotics. Mom reports that things are still on-track for transfer to Meadowbrook later today.
UPDATE: Wednesday, November 6th: 2:50pm. Dad’s had a rocky day, but Mom’s been working with the hospital and Meadowbrook (rehab) and it’s looking like Dad might be ready for transfer out of the hospital as soon as tomorrow!
UPDATE: Wednesday, November 6th: 10:15am. Dad ate ALL of his breakfast this morning and is now snoozing. He and Mom received some very good news, but it’s not firm yet and I don’t want to jinx it by revealing it just yet. But stay tuned!
UPDATE: Tuesday, November 5th: 3:45pm. Mom says Dad has been eating very well. After only one day, Dietary has cleared him for solid food. Today he held and drank from a bottle of Boost all on his own.
Say “hi,” everyone!
UPDATE: Tuesday, November 5th: 1:40pm. I just FaceTimed with Mom and Dad. He had a good nap, and his voice is CLEAR for the first time in a long time! We wonder if the feeding tube wasn’t causing some of his difficulty speaking. Mom will leave around 4 today to avoid rush hour and early darkness.
UPDATE: Tuesday, November 5th: 10:45am. Mom arrived this morning to find that Dad had slept well, but managed to pull out his feeding tube (which had been up his nose). This is now incentive for him to eat more! Physical Therapy came by and Dad got out of bed and walked with a walker to the door and back to the chair to sit down.
UPDATE: Monday, November 4th: 4:00pm. Dad’s first order of “food” arrived in pureé form and Mom is helping him eat it. Roast Beef and gravy, corn, and jell-o. Dad is eating, but desperately wants to go back to sleep. Once he is done, Mom and I will leave. This is my last day at Dad’s side for now. But I will check in with Mom several times a day and continue to post reports at least daily. Thank you all again for the love and support!
UPDATE: Monday, November 4th: 2:00pm. Dad had a good morning and has been much more alert after a 90 minute nap. He again transitioned barely assisted to the bedside chair. He was visited by the speech pathologist who has cleared him for food intake (pureéd). The surgeon has also been here and indicated that discharge might be possible later this week. But he has to start eating enough so that the feeding tube can come out. We are still waiting for word on a transfer out of the ICU.
UPDATE: Monday, November 4th: 9:15am. HAPPY BIRTHDAY, DAD! Today is Dad’s 76th birthday. Mom and I arrived to find Dad asleep. He woke up a few minutes later. We noticed his catheter has been removed. The only thing left “in” Dad is the feeding tube (up his nose) and the staples from the surgery. Dad is scheduled to meet with the speech therapist, the respiratory therapist, and the physical therapist. It will be a busy day!
UPDATE: Sunday, November 3rd: 4:00pm. Not a lot to report. Dad rested well this afternoon and will be moved back into his chair shortly, hopefully with minimal assistance. We will leave shortly for the night. We check in with Dad’s night nurse every night before we go to bed to see how his evening has been. Today was a good day!
UPDATE: Sunday, November 3rd: 1:10pm. Today has been an amazing day! Dad’s longtime friend and colleague Don stopped by. When he walked in the room, Dad grinned and nearly leapt up to hug him. They chatted for several minutes. Cousins Di and Greg also stopped by for a few minutes. Dad has been consistently conversant and enjoyed the additional company. We are still awaiting word about transfer out of the ICU, and hope tomorrow to get news about when he might be able to go to rehab. But for now…it’s nap time!
UPDATE: Sunday, November 3rd: 10:20am. We arrived to find Dad in his bedside chair being fed ice cream by his nurse. He “walked” to the chair (a few steps) using a walker. He is wide awake and talkative. His voice is still somewhat muted and raspy, but he can now be understood. That’s a lot of progress in 16 hours!
UPDATE: Saturday, November 2nd: 3:00pm. We just got word that there is a transfer order in the system for Dad–he will leave the ICU as soon as there is a regular room available! As I type this he is being assisted to the edge of the bed and is going to show Mom how he can stand–the best birthday present! But…he wants to go home. He’s frustrated. But that’s a good sign, in a way.
UPDATE: Saturday, November 2nd: 9:45am. Happy Birthday, Mom! When we arrived this morning Dad was awake and alert and the nurses had just positioned him to stand up, which he did. His ability to move himself is greatly improved over yesterday, though he still can’t quite manage to move himself completely unassisted. He is attempting to be conversant, but his throat is still very irritated and sore–even swallowing water is painful; but he manages. He is being encouraged to clear his throat as often as possible.
UPDATE: Friday, November 1st: 7:00pm. Dad stood up (assisted) this afternoon! He had a visit from the speech pathologist and also had a lot of “gunk” sucked out of the back of his throat. (He did not like that!) Our day with him ended on an up note: Dad was moved back into a private room! He’s still in the ICU, but we will be able to play him some music and be able to hear him better. And hopefully he will rest better.
UPDATE; Friday, November 1: 1:25pm. Slow but steady progress. Dad had his respiratory gear downgraded again and now just has humidified oxygen via nasal insert (external) and the feeding tube. The throat clearing continues—he actually requested ice chips! As I type, the phlebotomist (or “vampire,” as he called himself) is here for another sample. Dad’s been resting peacefully. I should say that all throughout this ordeal Dad’s vitals have been rock-solid. BP, blood oxygen, heart rate…all stellar. “Strong” is the word that comes to mind
UPDATE: Friday, November 1: 10:30am. Dad is wide awake this morning and the light is back in his eyes. Talking is still hard—his throat is still swollen/sore. They are monitoring him for signs of pneumonia and pulmonary edema, and we are still waiting for the results of the throat culture. Physical Therapy was just here and Dad did great! They sat him up on the edge of the bed. He did some leg kicks and very basic exercises. He was expressive, responsive, and communicative. Once his throat clears up, we should be able to understand him better and more consistently instead of short bursts.
UPDATE: Thursday, October 31st: 4:25pm. Dad has been sleeping for the last couple of hours. They just gave him a shave (face) and are “turning” him again (they do this every few hours to prevent bed sores). They have sent a throat culture to the lab to check for strep throat. His condition continues to generally, if slowly, improve. We hope he rests well tonight. Kelly, Amanda, Mom, and I are all heading back to Keeseville for the night (Amanda back to Potsdam to check on home and the cats). Mom and I will return early in the morning.
UPDATE; Thursday, October 31st: 2:00pm. The drains have been removed (I got to watch) and Dad’s head is finally elevated. It is apparent now just now much phlegm was trapped in his throat. The nurses have been working at helping him clear it, and his blood oxygen levels have improved substantially. He is aware and expressive, but still can’t quite talk—probably because of the stuff that’s still in his throat. He is being encouraged to cough and try to clear it.
UPDATE; Thursday, October 31st: 8:20am. Happy Halloween! Dad was awake and responsive when we arrived. He is much more aware of us and his surroundings than he seemed to be yesterday. He’s tried to tell us things a few times, but between the feeding tube and the oxygen mask, we can’t understand him. He seems frustrated (understandable!) and a little uncomfortable. We are hoping that the doctor will allow us to raise his head—he’s lying completely flat with no pillow.
UPDATE: Wednesday, October 30th: 8:50pm. The feeding tube was inserted without difficulty and Dad is receiving medication and much-needed nutrients. When we left he was finally asleep. We hope tomorrow is better. Thank you all for your kind words, thoughts, and prayers!
UPDATE: Wednesday, October 30th: 4:30pm. Not much has changed. The nurse and I tried to feed Dad the only med he needs but can’t take non-orally. We were not successful. As I type this, Dad is in Radiology where they are inserting a feeding tube to take care of this medication as well as general nutrition. We will be spending the night in Burlington again.
UPDATE: Wednesday, October 30th: 1:50pm. No real change. Dad’s breathing seems labored, but his respiration rate is what we are told they typically see after a procedure like this. He’s lying flat to facilitate drainage and recovery, which is not usual for Dad, and may be contributing to this. But we are told it’s best for now. But he does not appear to be “resting.”
UPDATE: Wednesday, October 30th: 10:30am. There has been some improvement, and the MRI is on hold for now. Dad is responsive to inquiry and instruction (e.g., “squeeze my hand”), but can’t be understood when he tries to verbally respond.
UPDATE: Wednesday, October 30th: 9:15am. Dad had a rough night. He’s been hooked up to an EEG to monitor his brainwave activity, which seems normal. He seems to be resting very deeply, but is non-responsive this morning. We are told an MRI has been scheduled.
UPDATE: Tuesday, October 29th: 9:50pm. After a minor miscommunication we finally got in to see Dad about 2 hours after being told he was out of surgery. (We thought we were told that someone would come to get us when he was “settled”–about half an hour; but maybe we were actually told to come back to the ICU or check with them after half an hour.) He was awake, but groggy and rather consternated and uncomfortable with the presence of a catheter. He was given something for alleviate the discomfort and began to settle down. We left him around 7:30. Mom, Kelly, Dean, Amanda, and I are all staying the night at a hotel very close to the hospital so as to be with him as early as possible in the morning (and close by in case we are needed during the night). We are very comfortable with and appreciative of the people caring for Dad. It makes sleeping a bit easier! Good night, everyone.
3:50pm – DAD IS OUT OF SURGERY! The surgeon had no residents today, so two attendings worked on him–probably why it didn’t take as long as originally predicted. The surgeon reported complete success, and the anesthesiologists just told us he did great. We are now waiting to see him.
UPDATE: At 1:00pm, Dad was taken to the Operating Room for surgery. We received much information from the O.R. staff and were able to wish Dad well before he left.
UPDATE: Tuesday, October 29: 12:45pm. It looks like Dad will be going into surgery this afternoon! They have begun prepping him and gathering consents.
UPDATE: Tuesday, October 29: 11:00am. Dad spent a couple of hours in a chair this morning. He was being returned to his bed when we arrived around 10. The nurse checked on the blood test and found that he should be clear for surgery now. The doctor is on the floor and we should see him soon to find out about scheduling Dad’s surgery.
UPDATE: Monday, October 28: 6:45pm. It’s been a rough day for Dad. A strong start went downhill somewhat after 4 failed attempts at inserting a feeding tube. Kelly joined Mom and me shortly after lunch. They left about an hour ago. I have stayed for awhile longer as I seem to be able to get Dad to eat. Maybe if I can get enough calories in him they’ll hold off on the feeding tube. He’s back on “Plasmalyte” via I.V. and has had more blood drawn to ensure that they have the “right stuff” on hand for his surgery.
Speaking of blood–we found out this afternoon that, much to our dismay, the blood that had been drawn and processed on Saturday hadn’t yet been evaluated! We’re upset not only that it took so long, but that this was NOT communicated to us at all. We finally heard back from the lab that he’s “on the cusp” (my phrase) as far as the aspirin being clear of his system. And at 5:00, the doctor who will be performing Dad’s surgery came to see us. He reviewed the CT scans with us and told us what the game plan is. The earliest Dad will see the operating room is Tuesday afternoon, but Wednesday seems more likely.
Thank you all for your thoughts, prayers, and support. It means a lot! Some of you have asked about visiting. That’s something that should wait until after surgery. Dad’s in the Intensive Care Unit right now and general visitation isn’t a good idea.
UPDATE: Monday, October 28: 10:20am. Dad is awake, alert, and talkative this morning. This is a big improvement over yesterday! He was moved from his private room yesterday evening–we were told a couple of trauma cases came in that required the space he was in. He’s now in a “common” (less private) area.
UPDATE: Sunday, October 27, 2019: 3:00pm. No surgery today. Dad spent a couple of hours in a chair this afternoon. Kelly, Dean, and Prescott visited. We hope to know more about when he will have surgery tomorrow.
UPDATE: Sunday, October 27, 2019: 10:35am. Mom and I arrived at the hospital and checked in with Dad’s nurse. He had a good night, and we were told that it’s possible that he may have surgery to remove the blood clots today. The reasons for the wait were that it was not deemed an “emergency” and that he had low-dose aspirin as part of his medication regimen and they want it out of his system before surgery (if possible) so that the blood thinning effects don’t complicate the procedure. We will know more later today.
Saturday, October 26, 2019. The story so far: About 4 years ago we noticed that Dad was…”slowing down.” His gait wasn’t what it used to be, his voice was mellower, and he was forgetting things now and again. In 2017, after seeing a neurologist, he was diagnosed with Lewy Body Dementia. Described as a “Parkinsonism,” it is not Parkinson’s disease, but is frequently mistaken for it. Simply put, protein deposits are very slowly deteriorating Dad’s brain.
Dad’s been basically OK for the last two years, though he forgets short-term things and complex tasks involving multiple steps need to be broken down or he needs assistance with them. Two weeks ago, things changed very quickly and we did not know why.
Having driven to Camp that afternoon, he came home, had dinner with Mom, and was on the couch watching TV. When it was time for bed, he found he couldn’t get up! Mom was able to assist him and get him to bed, but something was clearly wrong. By morning he had not improved. He could stand and “shuffle” his way around the house, but he was very unsteady and unsure of himself. He had strength, but seemed to lack the confidence to actually walk, almost as a toddler taking his first steps.
His annual check-in with his neurologist was the following week. We acquired a transport chair and I (Romeyn) accompanied Mom and Dad to Boston to see the neurologist. After hearing everything his diagnosis was that this was just a “dip” in Dad’s progression. They aren’t unheard of, but he admitted that the sudden onset was peculiar. He added a medication to Dad’s regimen and we went home to await the improvement that the doctor said typically happens in cases like this. Dad’s condition continued to fluctuate. One minute he’d “hop up” off the couch and shuffle (not really walk) to the next room to get something and make his way back to his seat, observed but unassisted. The next hour he might be barely able to stand. If there was any “improvement,” it was slight.
Yesterday at around 2:00am, Dad awoke and could not settle down. He kept wanting to get out of bed but wouldn’t or couldn’t say why. He was incoherent and would simply repeat what was said to him, appearing not to understand. After a few hours of that, Mom called Kelly and the ambulance. Dad was brought to the Emergency Room in Plattsburgh. Kelly called me and I joined them later that morning.
The hospital performed a CT scan which revealed a subdural hematoma (clotting) in Dad’s cranium in the space between his brain and skull. It looked “old” (about 2-4 weeks), coinciding roughly with a self-reported fall Dad had while at Camp. We were concerned at the time, but he hadn’t exhibited any symptoms and said he hadn’t hit his head. The clotting is applying pressure on his brain. THIS would seem to explain the sudden onset of these “new” symptoms! Dad was referred to and transported to the UVM Medical Center in Burlington yesterday morning. Kelly, Mom, and I accompanied him and saw to it that he got settled. He was evaluated by the neurology unit and they are reviewing surgical options to remove the clotting. There does not appear to still be bleeding. As I write this, Dad is in the Surgical Intensive Care Unit awaiting whatever it to be done, hopefully early this coming week–perhaps sooner if their monitoring detects ongoing bleeding. Mom, Kelly, Amanda, and I are with him.
That’s all we know as of right now–Saturday morning, October 26. You can contact any of us by phone, email, or Facebook Messenger if you like. We can and will relay messages to Dad. (Please don’t send flowers or anything like that–they’re not allowed in the SICU.)