Toward the end of August 2012, there was a noticeable deterioration in Becky’s mobility. Before that, it was not good, but it got worse. Before that, Becky was able to stand and to pivot by taking small steps. For her to get into her wheelchair, I would maneuver Becky from the family room couch by lifting her legs and then lifting her torso until she was in a sitting position. Then, I would lift her by putting one arm under her armpit and the other hand would grab the back of her pajamas. Then, I lifted. Once standing, she would grab a walker for stability. She would pivot 90 degrees so that then she could sit in her wheelchair.
But, at the end of August, her abilities started to deteriorate. She had less ability to stand on her own and she could not pivot. So, I would not only need to lift her, but I needed to provide support for her while she was standing. And, pivoting was a problem for us. She could not move her feet and it was hard to lift her up to force the pivot. But, that is what we did.
On Saturday, September 1, Becky wanted a special treat. She wanted a Culver’s mushroom and swiss burger, and a dairy queen chocolate malt. In all of these years, I could never say “no” to her. She enjoyed it, but could not finish it. One reason was her swallowing problems. She was having more and more troubles with swallowing. I did not appreciate what was happening to her at that time. She was eating less those past couple of weeks. She was having more and more trouble swallowing her pills (and she was taking a lot of pills). On at least one occasion, she took her pills but complained that they were stuck in her throat. I would give her more water to wash them down. And, then a while later, she would spit the big pills up; yes, they were stuck in her throat and she could not swallow them.
During the evening of September 1, Becky threw up. I could see larger pieces of the Culver’s hamburger come up. Well, in hindsight, what was happening was she was not getting the food or even the vomit into her stomach, but into her lungs. This causes Aspiration Pneumonia which is serious. And, this condition comes on remarkably fast.
Early in the morning on September 2, I could tell that Becky was not right. I called 911. At the emergency room, the doctor said that she was not breathing right and they wanted to put her on a ventilator. This is a device that will breath for you. A tube goes through the mouth and down the throat into the lungs. The doctor made it clear that her situation was serious. I asked if the situation was life threatening. He said that yes she could die, but he did not think so. Boy, was this a shock to me!
Becky was semi-sedated for the next number of days. She had a tube in her mouth so she could not talk. It was hard to tell if she was comprehending what was happening. And, to make matters worse, her left arm went completely limp; she suffered a stroke sometime during the first couple of days in the hospital. And, during the first couple of days, I could tell from the reaction of the respiratory therapists that things were not going too well. I was scared. Then, the pulmonary doctor told me that it was possible that she might NEVER get off the ventilator; we might need to make a decision down the road about removing the ventilator and letting nature take its course. You see, they cannot leave one on a ventilator indefinitely. I was very scared.
Sometime about the third day on the ventilator, things started to improve. She started to be able to breathe on her own and they even turned the ventilator off for short periods to see how well she was handling that. And, she was doing good! I was very much relieved! But, then she had a complication of a swollen tongue. It was big! They were ready to take her off the ventilator completely, but they were afraid that the tongue and throat swelling would block her airways. They tried to determine the cause of the swollen tongue. The infection doctor took a look at the tongue and said, “that’s weird!” So, they gave her a tracheotomy so she could breathe through the hole in her throat if the throat swelling continued. They removed the ventilator and she was breathing very well on her own. And, the tongue swelling went down almost immediately; she was obviously allergic to the plastic in the tube going down her throat.
During the two weeks when Becky was on the ventilator, her sister Sandy visited from Des Moines. She brought Becky a white, stuffed animal. Sandy thought it was a bear; I thought it was a cat; Becky thought it was a dog. At this point, Becky was communicating but had to write out what she wanted to say because she could not talk with the ventilator tube down her throat. Well, Becky loved the stuffed animal immediately. I do know that she wanted a real dog, but this was the next best thing for her. We asked Becky what she was going to name it. She wrote out, “Dakota Jr.”. Dakota? Where did that come from. We could not figure it out. And, it was not simply “Dakota” but it was “Dakota Jr.”. I went a number of days trying to figure this riddle out. The answer came when we saw a picture of one of Jessie’s friends from Kalamazoo who had a dog named Dakota. It was a white dog with a matted coat of fur, just like the stuffed animal. Actually, I was surprised at how close the two looked like each other. Well, Becky must have noted this right away, but was not able to let us know. So, until she died, Becky had Dakota Jr. in her arms almost all of the time.
Later we put a trach collar on Dakota Jr. like the one that Becky was wearing. Everyone thought that was cute. Becky liked it.
When Becky had the ventilator removed and the tracheotomy installed in the hospital, she was able to talk with the insertion of a Passy-Muir valve on the trach hole. This valve allowed air to go in, but not out. The air, to get out, had to go up the throat, past the vocal cords, and through the nose/mouth. In the hospital, she tried this and was able to talk. On a phone conversation with Aiden Cosentino, she told Aiden, “Grandma sounds funny”. Her voice did not sound like it did normally. But, then, Aiden told his Grandma, “no, you sound good!” Becky very much liked Aiden’s response and she told many people about this later.
But, again while she was in the hospital, she started to have trouble breathing while the Passy-Muir value was used. The ear,nose,throat (ENT) doctor said all was well. But, they asked her to stop using the valve and her talking days ended.
Becky spent just over 4 weeks at Edward Hospital. Then, she went to Manor Care Rehabilitation which is a sub-acute facility with nursing care, but much less so than a full-fledged hospital. She still could not use the Passy-Muir valve so she could not talk. They did do some trials, but found that she just could not tolerate using the valve for more than about 20 or 30 minutes. This was not normal. A pulmonary doctor was seeing her weekly about this. At one point, she was sent to the same ENT doctor that installed the tracheotomy. Everyone said that she just had to get stronger. I was very frustrated and I am sure Becky was also. She was tired of writing out her thoughts and answers to questions. Very frustrating. And, I knew something was wrong but the doctors simply did not help.
What I noticed was that Becky had absolutely no problem breathing without the Passy-Muir valve. She could inhale fine and exhale through the trach hole just fine. But, when the value was used, she had trouble breathing. And, I noticed that when the value was tried, I could hear a puff of wind when it was removed. Very strange. So, after over a month of no progress getting Becky to use the Passy-Muir valve, I started doing my own research. I really did not know anything about this, but I did read that a size 8 trach is used for males and the smaller size 6 is used for females. Becky had a size 8. Also, there is something called a fenestrated valve where the valve has a hole inside to allow air to move up into the throat easier.
I wrote a long note to the doctors; as a lay person, I really do not have good access to a doctor. I am always blocked by nurses and assistants. I gave the note to the nurses at Manor Care. I proposed that the valve size was wrong and that a fenestrated valve should be used. Actually, the head nurse at Manor Care did not seem to appreciate the fact that I was questioning the doctor. But, they did pass the information on. The reply was, “the right valve had been installed and the problem was Becky and not the valve”. And, by inference, I was told to just be quiet. They know what they are doing and I do not.
A few days later, I got a voice message on my cell phone from the ENT doctor. He said that he checked his chart and found that she had a different valve than he thought and that a smaller valve would be in order. Well, maybe stupid Jay wasn’t so stupid after all. They scheduled the procedure to replace the size 8 valve with a size 6 valve on the day before Thanksgiving. The following week, they started the trials with the valve again, and SHE DID GREAT. Within a few days, she was using the valve to talk all day. Everyone at Manor Care was pleasantly surprised to hear her talk after a couple of months there without talking.
December was a good month for Becky. She was talking using the Passy-Muir valve and doing physically therapy better as well. But, one night, the tracheotomy tube came out. This was not planned. It came out and the nurses could not put it back. You see, the body will begin closing the hole very quickly on its own. They sent Becky to the hospital emergency room to have the doctors there re-insert the tracheotomy tube.
Manor Care called me at home and I went directly to Edward Hospital. Becky was crying, saying “it was not my fault!” She thought they were going to blame her for purposely pulling the trach tube out. But, this was not the case. I told her that it was not her fault. But, I did notice that she was breathing just fine. No trach tube and she was just fine. Oxygen saturation in the blood was very good. The emergency room doctor called the ENT doctor. They decided that she was doing so well without the trach tube that there was no reason to put it back. So, they put a bandage on the trach hole and sent her back to Manor Care without the tracheotomy tube.
Again, everyone at Manor Care was surprised that she did not have the tracheotomy tube after having it for almost three months. She was talking and breathing like anyone else. She was getting better every day.
Christmas eve is a special time for us. The Cosentino clans will gather together in a tradition that was started by my parents when I was little. This included Bob Cosentino and his family, Carolyn Bonistalli and her family, and until he moved to Florida, Paul Cosentino. And, of course, my family. But, Paul, although he was absent since his move to Florida, he would always call and wish everyone a Merry Christmas in an extended phone conversation. For the Cosentinos, Christmas eve is special.
This past Christmas (2012), with Becky at Manor Care and unable to go to anyone’s home for our Christmas eve celebration, we decided to have our celebration at Manor Care! I ordered the ravioli from a local restaurant and made the salad and sausages myself. And, of course, I made the cannoli for desert using a time honored recipe handed down from my Grandmother, Anna Cosentino. And, wine! Jessie was in town for Christmas so she got Becky all dressed up; the first time in months. It was great!
After our Christmas eve feast, we played our usual game. Everyone brought a grab bag type gift. The game goes this way: each person has a number. The first person gets to pick a present and opens it. The second person gets the choice of steeling the first person’s gift or taking a new one from the pile of unopened gifts. And, so on. If one’s gift is stolen, one has the option of stealing from another or opening a new gift. It is a lot of fun. The gifts are not expensive including some gift cards. And, some gifts are gag type gifts which drives the “stealing”. It’s a lot of fun.
Well, we tried to make Christmas eve as normal as possible for Becky. But, she wanted to eat ravioli. She said, “what could it hurt?” She wanted wine and wanted a cannoli. But, we had to say “no”. She had been on a “nothing by mouth” order. But, for three days including Christmas eve, she was on a “liquid only” by mouth order. This was a trial. So, she was drinking her favorite “diet coke”. These were the only days since her Chocolate malt on September 1 that she had liquids to drink. But, the trial ended and she was back on a “nothing by mouth” order after that.
Christmas day was something else. The robovirus struck. I spent Christmas day in bed, vomiting and with diarrhea. Others also got it, especially in Becky’s Mother’s family. But, it hit Manor Care hard. For almost three weeks, Manor Care was under a “lock down” with all of the common areas closed and residents restricted to their rooms. Becky did not feel very good, but she did not get it as bad as some others. Jessie and Matt spent Christmas day with Becky. Becky opened some presents on Christmas day and others afterward. Becky’s mother, who had also been quite sick on Christmas day, did not see Becky for a couple of days; she opened her gifts from us a few days later. So, Christmas day was something else.
It was planned a couple of weeks in advance that Becky would leave Manor Care to go home on January 10. Both of us were so excited. Becky was so much better than she had been a couple of months ago. I recall one instance where the nurse practitioner told her that she was looking so much better. Becky would open her eyes wide open and smile. I could tell that she was so happy with her progress.
Getting ready for Becky to come home on January 10 was a chore because she still needed much support. She was still on a “nothing by mouth” order, had a g-tube for eating/drinking, could not walk, and could not get up to even use a bathroom. So, I had to put all of the support in place to continue to assist Becky until she could get stronger.
I hired 10 hours of home helpers (basically nurse assistants) every day; 5 hours in the morning and 5 hours in the early evening. I arranged for home therapy including a weekly registered nurse. I got a hospital bed and placed it in our family room. I did not want to leave Becky in some out-of-the-way room. I rented a nebulizer which provides medicine into the lungs for better breathing. I rented a suction device to help remove any secretions which Becky was still having. I rented a machine to govern the feeding through the g-tube. I rented a hoyer lift which would be used to move Becky from her bed into a wheelchair. We ordered a custom made wheelchair that would fit her body perfectly. I purchased a lot of other things like: adult diapers, latex gloves, a pill crusher, and so on. In the end, I WAS READY for Becky to come home!
On January 9, Becky was examined by Dr. Bogojevic who is her primary care doctor. She was given the ok to go home. We were both so happy! During the day, I was given instructions on daily care and how to use some of the rented equipment. I was with Becky all day. I left for the evening about 6pm because I still had to go to Walgreens to pick up some additional items.
At 4am, I received a call from Manor Care saying that they had sent Becky to Edward Hospital because she was in distress. I asked what that meant. The nurse said simply that she was in distress. But wait, this was the day that she was supposed to come home! She was scheduled to come home in less than 12 hours! I immediately went to Edward Hospital. When I saw Becky, she was not looking good. She was given a strong sedative, but she was not moving. Her eyes were half open and did not blink. I knew this was not good, but I still did not focus on the possibility of her dying. When one is in such a situation, it is impossible to look at the situation objectively.
During the morning and the day, I remained cautiously optimistic. Not sure why, but I was. I knew that she had a bad case of Aspiration Pneumonia and it would take some time for the antibiotics to start working. However, there were some bad signs. She still was not moving. I could tell from observing the nurses and therapists that they were not getting the reaction from Becky as they expected. I also knew that the oxygen saturation in her blood was too low; it ranged from 70% to 85% and I was always told that it needs to be at 90% or higher to maintain oxygen levels to vital organs. I remained with Becky and talked to her as much as I could. I also was praying a lot.
I remained in contact with my family on that Thursday, January 10. I was not asking the family to come together and did not raise any other red flags. Becky’s sister decided early on that Thursday to come to Chicago from Des Moines. But, as Matt said, there was a time on that Thursday afternoon that my tone changed in my text messages and he knew things had changed for the worse.
Thursday late afternoon, the intensive care nurse told me that someone needed to tell me something. She said that this was 9 years of nursing experience talking. She said that she did not think that Becky would survive the night. I was floored! I was scared! I was in almost disbelief. But, the nurse wanted to give us the opportunity to bring the family together. I sent Matt a message to come now; he lives in Chicago so I knew he could get there soon. I called Jessie and asked her to get a flight from San Francisco that night. I called Andy and asked him to drive from Detroit right away. Matt got to the hospital reasonably soon. Andy got to the hospital by about midnight or 1am. Jessie got a United flight that would arrive at O’Hare at 4:45am.
Early Friday morning at about 2am, Andy, Matt and I were at the hospital. Sandy and her mother had left to sleep at home; Evelyn lives only 5 minutes from the hospital. We all had settled in for the night. Andy and I were in Becky’s room while Matt was in the family room nearby. At 2:30am, I heard a beeping sound and looked up. The intensive care nurse jumped up on Becky’s bed and was giving CPR. Becky had a cardiac arrest. I say Andy jump out of his chain and yell, “NO!” I jumped up and ran to get Matt. Within a few seconds, the room was filled with about 15 hospital nurses and doctors. The responsive to the crisis was amazing. I give them LOTS of credit for what they did. And, after about a couple of minutes, I heard one nurse say, “we have a pulse”. The flurry of activity by the nurses and doctors died down quickly and I took this as good news. And it was.
We all realized at that time that Becky was not going to survive much longer. I was asked by the nurses if they should continue to use all efforts in the case of another cardiac arrest or whether they should just make her comfortable. I told them that Becky’s daughter, Jessie, was coming from San Francisco and should be at the hospital before 6am. I gave instruction for them to use all efforts to keep Becky alive until Jessie got there. After that, I might make a different decision.
Well, Becky had no more arrests like that one. She remained in the same state as before for the remainder of Friday, January 11. She remained non-responsive. But, she had a heartbeat. The ventilator was breathing for her. She was alive, I think. The family was now there. We spent a lot of time around Becky praying. We talked to her as much as we could.
Friday morning, I called Father Sularz at St. Daniel the Prophet Catholic Church. He came right over and gave Becky the last sacrament. It used to be called Extreme Unction but is now referred to the “anointing of the sick”. I also called the funeral home and got an appointment to determine what I needed to know and do. I told them that she was likely to die in the next few days. But, by the time I returned to the hospital, I was told that the doctors were sure that there had been massive brain damage and that it was possible that she was already brain dead.
The family got together to discuss what we thought might be the appropriate and humane thing to do. One by one, we all gave our opinion. We decided unanimously that we would ask the nurses to withhold medication and thereby let Becky die. The nurses did that. Becky’s heart continued to beat for about 20 minutes and then it stopped.
