by Judy Handley | Jun 11, 2014 | Cape Cod USA, Sailing Logs Year 9 |
Day 233, Year 9: Slow but Steady Progress
Date: Wednesday, June 11, 2014
Weather: Partly Sunny, Cooling Down
Location: At “Porat’s by the Bay” in Greenland, NH
I’m happy to report that the patient is making slow but steady progress, with an emphasis on STEADY. Mark was able to eat a little more today, walk a little more, and definitely sleep a little more! He eats a little, drinks a little, sleeps a little, and then starts the cycle all over again. All bodily systems are working normally, but we still have this drainage issue. And about that, we have more questions than answers about his lymphatic leak. We weren’t able to get through to the doctor today. We left a list of our questions with her answering service and hopefully we will hear from her in the morning. In the meantime we are only guessing at what is happening. The internet offers a plethora of information, but we know too little to probably analyze what we are reading. We do not even know what kind of lymphatic leak he has and what might have caused it. So once again we wait. What we do know is that the fluid that is collecting in the drain bulb has a very, very high triglyceride level as per testing done yesterday. Triglyceride is just a fancy word for fat, and we know that he has been put on a NO FAT diet to try and curb the leakage. And we guess that the leakage was caused due to trauma from the surgery. So we are working on learning just what it means to be on a NO FAT diet and how at the same time to get the vitamins and minerals necessary to stay healthy. He’s drinking Ensure Clear, the new V-8 all fruit and veggie drinks that have the equivalent of one serving of fruit and one of vegetables in each can, and tonight we added Gatorade for the electrolytes. I must say that the latter really perked him up, so we’ll try a little more tomorrow.
Another thing that perked Mark up today was a visit from Alan and Helaine Kanegsberg. They were in the area getting their boat ready to launch tonight at the 2 am high tide. They don’t need to be there for the launch but they did need to do the last minute preparations today. The timing was perfect for Mark as it was so nice to just sit and talk with them. Mark has seen only nurses, doctors, and me for the past six days. Talking with Tom and Detta last evening when we arrived here and talking with Alan and Helaine today helped him feel like he is really re-entering the ‘normal’ world again. Well, at least re-entering the real world. I’m not sure the world is in any way ‘normal’ any more.
by Judy Handley | Jun 10, 2014 | Cape Cod USA, Sailing Logs Year 9 |
Day 232, Year 9: Out of the Hospital, but Not Out of the Woods
Date: Tuesday, June 10, 2014
Weather: Rain Early, Then Cloudy and Windy
Location: At “Porat’s by the Bay” in Greenland, NH
Mark is out of the hospital, but he is not ‘out of the woods.’ He is having a bit of a struggle with recovery. When he came out of the operating room last Thursday he had a drain tube inserted into the surgical site with a little soft plastic drain bulb attached. When we asked why he has the drain the doctors and nurses all just said that is normal after some surgeries. But the draining has not slowed down and today the color of the drainage changed indicating that there is a high level of fat in it. The doctors say this is the result of a lymphatic leak. The first line of defense for this is to eat a “NO FAT” diet. Add to that the order to eat no red meats and no green or raw vegetables and you have an order that is easier said than done. But we are working it. However, since Mark is still not eating or drinking much, the diet isn’t the biggest problem. I decided to stay here in New Hampshire with Mark tonight and after a good night’s rest, we’ll figure out how to deal. Right now I just need sleep. But I can’t close without saying a great big thank you to Tom and Detta Porat for providing a ‘stable’ home for Mark for a few days post-surgery. What wonderful friends!
by Judy Handley | Jun 9, 2014 | Cape Cod USA, Sailing Logs Year 9 |
Day 231, Year 9: We Win . . . the Waiting Game
Date: Monday, June 9, 2014
Weather: Mostly Cloudy, Cooling Down a Bit
Location: Back Home on Windbird, Quissett Harbor, Falmouth, MA
Unless something happens to change the plans, Mark will be released from the hospital tomorrow morning. This is the soonest that we anticipated that he could possibly be released, thus I say ‘we win’ the waiting game. Actually Mark wins. He is doing great. This morning before I got to the hospital, they removed the epidural. Later in the morning they removed the catheter. Suddenly he was free from tubes leading to regulators on that heavy pole he has been pushing around since Friday. So he was able to walk freely through the hospital and outside whereupon . . . Mark immediately felt like he might need to go to the bathroom. This was a good sign, but not good to be outside. So we walked up the steps to the walk in front of the Bullfinch Building and back into the hospital whereupon . . . the urge left him. So we decided to venture into the Bullfinch Building to the historic operating arena under the Ether Dome that I mentioned in yesterday’s log. The Bullfinch Building (designed by architect Charles Bullfinch), as well as the Ether Dome, are both National Historical Landmarks and we really enjoyed our little self-led tour. Inside the operating arena there is mummy that was donated to Mass General, a skeleton that was used for teaching anatomy in the early 1800’s, display cases with surgical instruments from those early days, and photographs of the hospital and the operating arena as it was then. In areas around the arena there were examination tables from the 1800’s—some were leather and others velvet! I’m going to have to talk to my doctor about this. I want a velvet examination table! Mark and I both love Boston and I think it is because at every turn there are fascinating historical landmarks. I didn’t even mention that yesterday at lunch time I took a walk down Charles Street and then up Beacon Hill to walk part of the Black Heritage Trail. Just walking past The Charles Street Meeting House that served as a pulpit for abolitionists like Frederick Douglass and Soujourner Truth gave me goosebumps.
But back to the present. Once Mark and I returned from our little historical foray today, Mark had soft food waiting for him. Tuna salad on white bread and angel food cake didn’t look very inviting to me, but it was the first food Mark has had since last Wednesday, so ate just a little as he was instructed and it tasted great to him. Then mid-afternoon, Dr. Ferrone and her entourage of residents came to visit Mark and announce that he can go home tomorrow morning. Yikes! We had to switch gears from waiting to getting ready to go. I left almost immediately to avoid rush hour traffic to come home to do a bit of cooking for Mark and to get some food items that he will need this week. Tomorrow morning I will head back to Boston to pick Mark up and then take him to New Hampshire to spend the rest of the week at the home of friends Detta and Tom Porat. I will return here to do my Granny Nanny thing for the rest of the week and then drive back to New Hampshire for the weekend. All of that waiting has suddenly turned into a whirlwind of activity. But that’s okay because Mark will be out the hospital where it is almost impossible to rest and be transported to ‘Porat’s on the Bay.’ Tom and Detta live on the Great Bay in Greenland, New Hampshire, just a few miles from Portsmouth. Mark can walk out of his guest bedroom there and sit on the edge of the Bay and read. Short of being on a boat (where he should not be quite yet), I can’t think of a more perfect place for Mark to recover from surgery. Thank you, Tom and Detta.
by Judy Handley | Jun 8, 2014 | Cape Cod USA, Sailing Logs Year 9 |
Day 230, Year 9: The Waiting Game
Date: Sunday, June 8, 2014
Weather: Sunny with High Temp in the 70’s F
Location: At Home with Sue and John Reed, Cambridge, MA
Today we continued the waiting game. There has been no change in Mark’s condition. We are waiting for his bowels to ‘wake up’ and start functioning. Maybe tomorrow, maybe the next day, maybe even longer. But until there is some movement, he can’t be released from the hospital. So we wait. He was taken off the IV feeding tube on Saturday and is on limited liquids. He has constant hiccups which are irritating but which the doctor says will go away. He is still hooked up to the epidural and a catheter, so he continues to have to walk around with that heavy pole, but he manages to get around quite well. Today we spent more time outside in the sunshine. We sat in front of the oldest building at Mass General—the Bullfinch Building with the green Ether Dome atop. The Ether Dome tops the surgical arena where the first public demonstration of inhaling ether as a surgical anesthetic was used in 1846. There is a lovely lawn in front of that building, so when you are sitting there you feel like you are in a park. We also walked around the hospital a bit and found models of the hospital and surrounding grounds in the early 1800’s and today. My, has Mass General grown. It started out as just the Bullfinch Building and now looks like a modern industrial complex. In the early 1800’s, the Charles River ran right next to the hospital. Over the years there was a landfill project that more buildings, Storrow Drive, and a park along the river sit on. Mark is in the tallest building at Mass General on the 7th floor. For his surgery in 2012 he was on the 22nd floor of the same building in what is called the Phillips House. We went up there on the elevator just to see the views before ending our tour.
Mark informed me that I made a mistake in yesterday’s log. I said that you blow into the incentive spirometer. That is incorrect. You inhale and hold your breath to keep the little ball up in the tube.
by Judy Handley | Jun 7, 2014 | Cape Cod USA, Sailing Logs Year 9 |
Day 229, Year 9: Enjoying the Sunshine
Date: Saturday, June 7, 2014
Weather: Sunny with High Temp in the 70’s F
Location: At Home with Sue and John Reed, Cambridge, MA
Just as I arrived outside Mark’s hospital room this morning, Dr. Ferrone came out giving me orders, “Take him outside to enjoy the sunshine. And ask a nurse for another gown to cover his back side!” I took this to mean that Dr. Ferrone thinks Mark is doing just fine, so I asked no questions and got ready to go outside with him. It seemed easy. But when I went to the nurse’s station to ask for another gown, the woman at the desk asked why. I explained that he needed it to cover his back side when he went outside for a walk. One hospital gown just doesn’t quite cover everything. She looked wary and asked, “Did the doctor say he could go outside?” I said yes, but she declined the request and said she would have to check with his nurse. Mark’s day nurse is a young woman who is very attentive, but she goes by the book. She said the doctor didn’t mention this to her and that she would have to check. It took a bit, but eventually one of Dr. Ferrone’s residents came to the floor and gave written orders. We got the extra gown for modesty’s sake and headed outside. When we got on the elevator a young man asked earnestly, “Are you breaking out?” We got a laugh out of that one. The weather today was glorious. The sky was a cloudless deep blue, the temp was in the mid-70’s, and the sun was shining brightly. When we went out this morning, there were no other patients so we did feel a bit like we were breaking some rule. But when we went out again later in the day, there were a few other patients, so it felt more normal to be walking around with a man wearing a flying nun costume while pushing a mobile pole holding mega-equipment regulating the tubes going into him. Not your everyday scene, but it made for a great day. And we both really enjoyed the fresh air sunshine.
Have you ever heard of an incentive spirometer? This is little plastic gadget that you blow into post –surgery every hour or two to keep your lungs healthy. You blow into a tube that causes a little ball to rise and the goal is to keep the little ball at a certain level. At Mass General the nurses are insistent that you do this. Mark has found that it is much harder to do after open surgery than after laparoscopic surgery, but he has been doing his best. This device is disposable, so you can take it home with you when you are released. So the best thing about this is that we are now going to be the proud owners of three of these little plastic devices. We currently have two and Sam and Jonah have each claimed one. Now we will have one for Ollie. You wouldn’t believe how much fun little guys can have with these things. Sam and Jonah pretend that the spirometer is the regulator for their pretend dive gear . . . and they do a lot of pretend diving when they are aboard Windbird. Now Ollie will be able to ‘dive’ with his big brothers. This is just one of the perks of enduring surgery. What a granddad won’t sacrifice for his grandchildren!
by Judy Handley | Jun 6, 2014 | Cape Cod USA, Cape Cod, USA, Sailing Logs Year 9 |
Day 228, Year 9: Superman
Date: Friday, June 6, 2014
Weather: Mostly Sunny and Warm
Location: At Home with Sue and John Reed, Cambridge, MA
Mark’s ability to recover from surgery is nothing short of amazing. Today I dubbed him Superman. By the time I got to the hospital this morning, he had been out walking with a nurse and was sitting up in a chair. He continued to walk throughout the day and is feeling good. They let him start drinking liquids today, but when his surgeons came in to see him this afternoon, they reversed that order as they felt he was starting to bloat a little. We hope he will be able to resume drinking liquids tomorrow, but we shall see. Both his original surgeon, Dr. Sylla, and his new surgeon, Dr. Ferrone, came in to visit and they both think he is doing great. Let’s just hope things continue this way.
I left in the afternoon and drove to Concord, New Hampshire, for Linda Stuart’s retirement party. It was the first time I have seen many of the teachers in attendance since I retired in 2005. I recognized most everyone, but there were a few people who had changed so much I just couldn’t associate a name with the face. It was great fun to see everyone, especially a beaming Linda. It was 8 pm by the time I got back to the hospital and my niece Candi and her husband Char were there visiting with Mark. They agree with me that he is doing great. I’d love to write more about Linda’s party, but I keep falling asleep. So the photos from the party will have to tell the story.
