Hi everybody,
In case you have been wondering why you haven’t heard from Frank for a while, here is why …
Frank has been at Alta Bates hospital in Berkeley since Sunday, May 30th. He has been in intensive care since Tuesday, June 1st. He is doing much better, but we wanted to let everybody know what happened.
Several days before Frank, Linda & Mikee decided to bring Frank into emergency, Frank was experiencing symptoms which they later found out were related to gallstones, and gall bladder problems. Dark urine, severe gas, tightness in the body … They called Eda, Alexi’s mom, in Brooklyn, NY, who has been an RN her whole life. She recommended that they go into the hospital right away, better not to wait to go into Frank’s regular doctor’s office. She was right. Frank went into the emergency room Sunday night, and was admitted sometime early the following morning. The exploratory procedure the following day revealed a gall bladder filled with gallstones, and beginning to gangrene. They entered the hospital not a day too soon.
The surgery the following day to remove the gall bladder was successful. The surgeons said that his gallbladder was like a “sack of marbles”! But the surgery was very hard on Frank, and immediately following the surgery, Frank could not breathe on his own, and was put on a ventilator, and taken into intensive care. We knew that Frank’s lungs were sensitive, but there were a whole host of other physical challenges that came at Frank following the surgery, including the threat of kidney failure. So this started the first week of a hair-raising journey that has now lasted 3 weeks, and is still not over.
1st week: Sunday, May 30th – Saturday, June 5th
Following the surgery, Frank was brought into the Critical Care East wing at Alta Bates. Frank was soon very eager to get off of the ventilator, and to begin eating and drinking normally again. Frank’s friend and ENT doctor of 25 years, Dr. Rich Kerbavaz, became involved in the case, and talked to the ICU doctors about his experience of Frank, and what is “normal” for Frank. His breathing and eating may not look the way they are expecting. This is controversial. Not all of the doctors agree, but there is a strong push to wean Frank from the ventilator, and get him started eating and drinking again. They remove the breathing tube, which is a big deal, and Frank embarks on several days of swallowing and eating tests. They are disasters! Frank ends up on the BiPAP (basically a breathing mask), a substitute for the breathing tube. The “tests” result in heart rate problems, gas, difficulty breathing. Frank is also dealing with fluid in the chest and lungs, very bad kidney numbers, the heart “A-fib” (Atrial Fibrillation), blood pressure problems, gas and digestive issues. All of these things make it harder for Frank to breathe as well, and he hasn’t eaten for a week!
At the end of this week, after the East unit’s patients are all moved to Critical Care West, Frank is very anxious to get off of the BiPAP. Saturday night, Frank’s heart goes A-fib, he is having trouble breathing, and the breathing tube is put back in.
2nd week: Sunday, June 6th – Saturday, June 12th
“Two steps forward, one step back.” – Dr. Olson
This is a week of setbacks. The week starts with a scary warning from one of Frank’s nurses: “Frank is a very sick man.” This followed a request, standard procedure, for Frank’s medical directive paperwork. It throws all of us into a temporary meltdown. This is Monday evening. Later that night, the night shift doctor sums up the week’s theme: “You know as they say,” she tells Linda, “in Critical Care its always 2 steps forward, 1 step back.” It really helped to hear this. “No,” said Linda, “I didn’t know that’s what they say!”
This was a week of “weaning” trials on the ventilator interspersed with setbacks. A rash that appeared in the first week starts to spread across Frank’s belly and back, and Frank bites, unintentionally due to his spasticity, through two tubes! First, the tube that creates the vacuum seal on the tracheal balloon for the breathing tube, and the tube has to be replaced! Then, later in the week, Frank bites through the feeding tube, which also needs to be replaced. Each time, a day or part of a day is lost, and “weaning” is postponed.
The nights are difficult, Frank is very uncomfortable with this mouthful of tubes, and can’t sleep. There are continuing problems with digestion, retaining fluids, and Frank’s kidneys. Also, he has a fever, which like the rash, is mysterious and stumping the infectious diseases doctor … Another day is lost to a CT Scan to try and locate possible sources of whatever infection is causing the fever …
However, the week ends with what feels like a turning point: Friday night, Dr. Rubaii, a great Critical Care doctor, often working the night shift (Mikee thought he should be wearing a cape!), flew in and gave Linda and Corey a guided tour of Frank’s body on the ICU computer, showing them everything through the CT Scan’s cross-sections of Frank’s body. Basically, everything looks good! There is some fluid, but they are starting to get the fluid moving through, drying up, but everything looks fairly normal to him. Added bonus, Frank’s prostate is in good shape! The real issue for Rubaii is getting Frank off of the ventilator. All of these other “complications” that came up after the surgery were nothing to worry about, as far as he was concerned: “We need to get him off the vent!”
3rd week: Sunday, June 13th – Saturday, June 19th
“Do they always put on a hospital show?” – Frank Moore
The third week has felt, in many many ways, like a significant turnaround, and on the road to recovery. Frank’s swollen body, filled with fluids not being processed well by his kidneys, returns to its normal size, his kidney levels improve, blood pressure and heart rate finally stabilize and the IVs gradually drop away. Day by day, the rash begins to clear up, Frank’s fever goes down, and he is on a liquid diet through the feeding tube that he is digesting. Frank continues the “weaning” trials on the ventilator, gradually reducing the pressure support that he is being given by the machine.
Over the course of this week, the issues involving the discomfort and risk of the tubes come to the fore. Frank loses a tooth to the uncomfortable breathing tube, and the idea of a tracheostomy is looked at and then chosen as the better alternative, both for his comfort and for how it will help the process of weaning from the ventilator altogether. After biting through a feeding tube for the second time, it is now moved into his nose, which is not perhaps more comfortable, but less risky; and the idea of a PEG feeding tube, fed directly into Frank’s stomach is considered.
Dealing with the discomfort of the tubes and tracheal pain and trying to help Frank sleep at night continue to be challenges. The doctors want Frank to rest at night and get stronger, but this is usually Frank’s “work time”! The “go-to” drugs in the ICU are generally Fentanyl and Ativan, fast acting meds for pain and anxiety, but they tended not to work so well for Frank … he likes vicodin! Frank on Ativan was a little disturbing at first, but mainly funny, surreal, and quite accurate! Frank says he “likes the Halloween people,” and talks to Linda of their “delivering our next act.” He tells Mikee, “Baby, I’m getting a lot of ideas.” At times, he knows it’s the drugs, and says, “See why I don’t speak when I am tripping?” In reality, it all made perfect sense. The ICU at night is surreal even without drugs! One night, he asked, “Do they always put on a hospital show?”
But Frank, true performance artist, gives the ICU an unforgettable hospital show. Wednesday, following a successful tracheostomy by Dr. Kerbavaz, during a routine turn in the bed, the “trach” tube pops out of Frank’s neck!!! Without the amazing speed and focus of the team of nurses, respiratory therapists and doctors in Critical Care West, Frank would not be with us. They saved his life. They all said they had never seen anything like it. Kim said that in her 30 years of nursing she had never heard of this happening, it was just something you read about in textbooks! The charge nurse tells Linda and Mikee that Frank has certainly left his mark. When they finally let Linda and Mikee back into the room, Frank was sitting up pretty and smiling! But it is perhaps the most traumatic experience of our lives.
Meanwhile, Frank has been doing his thing! The word has spread in the ICU that Frank is a radical artist and local celebrity. Nurses and therapists love Frank’s paintings, and are inspired by his presidential platform. There is practical talk of socializing the health care system, inspired by Frank’s health care plan. “Everyone in the health care field knows that you could successfully socialize health care in the U.S. in 6 months …”
By the end of the week, Frank is making great progress toward getting off of the ventilator support. He weans longer and longer each day, needing less and less support. This time around, the other problems that surrounded his attempt to “wean” have all but faded away. The end of this week saw Frank “Dangle” (off the edge of the bed), and then spend the following two days moving into a “cardiac chair” to get him sitting upright. The first day he had his first “real” food and water for nearly two weeks. He started off with a cherry popsicle! Saturday the 19th, Frank wore only a “trach collar” all day, meaning that he was basically breathing on his own, with a limited amount of oxygen support from the machine. He did great.
As we head into the 4th week, and Frank’s breathing improves with every day, the focus turns toward eating!
We can not say enough about the nurses, doctors and therapists of Critical Care. Without going into the ICU, you will never see this parallel universe of caring people from all walks of life, giving all of themselves, every day and night, to save the life of anyone who is given into their care. They are superheroes, all of them, and it has touched us to the core to see what they do, both with Frank and with everyone in the ICU.
Linda and Mikee have been with Frank nearly 24/7 since he entered the hospital. Corey has started doing 12 hour shifts with Mikee, so that Mikee can spend time with Kittee, their 20 ½ year-old Siamese, who is also taking a hit with their absence. Alexi is cooking all of the food for everyone, and Erika delivers these amazing meals to the hospital almost every day. Hot miso vegetable soup and assorted delicious sandwiches are the standard fare. And Betty is moving Frank along with her prayers and love, which carry a lot of weight! Together we are making it through this!
In Freedom,
Frank Moore
