Did you catch part 1?
In part 2 you will witness Annie’s strong will to survive against overwhelming odds. And hopefully you will be inspired in knowing that no matter how difficult the circumstances, you should never give up. Life is precious, and “it’s not over until it’s over.” We were living on hope–that’s all we had left.
I said earlier in a article I wrote on her initial diagnosis, that from the second month of her illness she was known as their little miracle girl in the hospital and at the cancer center. Her diagnosis was 2 to 3 weeks to live, although I was told privately she should not even be alive. So here we are, 15 months later, and once again she finds herself in a battle for her very survival.
We waited for a good hour or maybe a little more. The first person that came to the waiting room was Dr. Dang. When I walked out into the hallway she told me that Annie was critically ill, and that Dr. Troung would be out in a few minutes to speak to us. I asked her if Annie was going to be okay, and she didn’t say a word. She simply put her two index fingers together pointing straight into the air. She was telling me in her own way that Annie’s chances were fifty-fifty. We had been there before, but never as traumatic as this. It was obvious, that Annie was going to need all the help she could get with this event.
A little while later, Dr. Troung came out with a couple of small pictures he wanted to show me of the inside of her lungs, he took with some sort of scope. They were before and after pictures of the suctioning of the lungs. The before picture showed many of the tiny, thin-walled air sacs, called alveoli, which were all full of what looked to be pus. What they actually do is complicated, but it’s to do with the exchanging of gases. In the second picture they were beautifully pink and free of pus. I don’t know how many he cleared of pus, but he seemed pleased. It wouldn’t change her infection, but would help her breathe. He said the ventilator was now breathing for her, and she seemed to be comfortable. He then gave us permission to go back to her room.
When Melissa and I walked in the room, we weren’t ready for what we saw. Annie was lying in her bed unconscious and now on the ventilator. Her arms were down by her side, tied at the wrists to the bed rails, with some sort of soft cloth. We could see her chest rise and fall; it was apparent the ventilator was simply giving the doctors more time to try to resolve what had become a very complicated illness. They administered her IV Propofol, an anesthetic, to help her rest.
I knew there were a lot of issues surrounding the ventilator and diseases such as Annie’s. The ventilator is used to support a single failing organ, which in Annie’s case was her lungs.
When a person is terminally ill, it’s a difficult decision whether to ventilate the person or not. Reason being, the ventilator will not fix any of the problems related to the illness; and this is where the controversy comes in. If Annie’s illness didn’t start to turn around in a week or so, when would they shut the ventilator down? And who would make that decision?
This was my first experience with the ventilator, but I’d heard from other caregivers that it can be frightening experience, as sometimes one is left with more questions than answers. That seemed to be the case with Annie at the moment.
September 9, 2009: Dr. Tom Moore, infectious diseases, was consulted by Dr. Dang and came over today. In his physical examination notes he writes, “critically ill and acutely ill, frail older lady.”
Annie had been a very young looking, attractive woman when diagnosed at age 58. Fifteen months into her illness, the doctor’s notes just about said it all.
He spoke with me extensively about her history the past few weeks, to include where she had been, right down to the local area. He indicated she might have contacted a virus from the soil. He also stated, “Given the history of travel and the incubation period, I can’t completely exclude swine flu (H1N1 influenza A).”
He had Annie immediately started on Tamiflu, 75 milligrams twice a day, and ran many tests and cultures.
September 10, 2009: Dr. Tom Moore came back over today and examined Annie. He stated that “There was increased pulmonary vascularity suggestive of mild congestive heart failure.” Respiratory swabs were obtained, and he checked her for Legionella, which is Legionnaires’ disease. He wasn’t ruling anything out, and equated the event that was taking place in Annie’s lungs to an “Explosion.”
Annie had an X-ray later today, which showed she had an extensive bilateral pneumonia, with the greatest concentration in the upper left lobe, but with no abscess. That was terrible news. She had pneumonia in both lungs, and with her immunity being so compromised by the cancer, she was in a battle for her survival.
Later in the afternoon, Annie was feeling poorly and very agitated. Propofol wasn’t helping her rest or sleep. A contributing factor may have been the steroid she was on, which can, and often does promote sleeplessness.
She kept jerking her little skinny arms toward her as forcefully as she could. She was trying to get loose; and I was afraid she was going to hurt herself. I said “Hang on a minute Annie, I will loosen the restraints a bit so you can move your arms.” I guess I loosened them a little bit too much. I turned my head for a second or two and when I looked at her she had both hands on the ventilator tube trying to pull it out. I managed to get her hands away from the ventilator tube just as a nurse walked in. The nurse gave me a stern look, then helped me secure them back in place.
Some folks have been known to pull the ventilator tube out and injure themselves. There is a balloon-type device at the bottom of the ventilator tube holding it in place, and if pulled out before the balloon is deflated, it can cause injuries. Watching Annie fight so hard to free herself made me sad. I’d never given any thought to the consequences of releasing her hands; but I guess common sense would dictate that the patient was going to try to pull the ventilator tube out of their throat if given the chance.
September 11, 2009: Dr. Farhat came over this morning on a consultation request from Dr. Dang, to check on her possible congestive heart failure. His impression as written in his notes was, “Respiratory failure requiring ventilator with severe pneumonia and evidence of fluid overload.” Further, “Congestive heart failure (diastolic and systolic) with an ejection fraction decreased to 44 percent.” That was more bad news; moreover, her heart was getting weak and starting to struggle.
Dr. Farhat treated her for the fluid overload with Lasix, which worked well for Annie in the past, and with the reduced fluid volume, her heart wouldn’t continually be on overload. He also started her on low-dose Lisinopril, a medication which can be used alone or in combinations with other medications to treat heart failure. It would also decrease certain chemicals that tighten blood vessels, allowing the blood to flow more smoothly while helping the heart pump the blood more efficiently.
Dr. Troung came over around noon to check the ventilator to see if her breathing had improved or not. I was watching him as he bent over and just seemed to be staring at the machine. He raised his head up and called me over to the machine and in an elevated voice said, “Look, look, look!”
I looked, and all I saw was some sort of meter and a bunch of numbers.
He remarked in an excitable voice, “She is starting to breathe on her own.” Her stated that her lungs were breathing at about 15 percent of their capacity.
That was good news and meant something was happening inside her lungs, and hopefully she would gradually improve. Most likely, her pneumonia was starting to retreat. What a blessing and miracle that would be. Annie was literally knocking on death’s door a day ago.
Dr. Tom Moore came over this afternoon and was pleasantly surprised too. He ordered another X-ray, and indeed the pneumonia had retreated a little. The question was; “Would that continue?”
He said he was still looking for answers, and that the illness she was suffering from was almost totally associated with the lungs.
What was still bothering him was, “What was the underlying cause?”
He said there was such a rapid onset of pneumonia, there had to be something else going on.
September 12, 2009: Dr. Troung came over again this morning and checked on her breathing status. He was very pleased and said Annie was making remarkable progress. He said he’d get a call from the nurse later today on her status and start weaning her off the ventilator if she continued to improve.
Around 4:00 P.M., one of the nurses checked the ventilator and called Dr. Troun, giving him the status of her breathing. I’m not sure of the percentage, but the decision was made to start the weaning process. The nurse slowly started turning down the ventilator a little at a time over a two hour period and Annie seemed to be tolerating it well.
He received a call from the nurse again around 6:00 P.M., under pressure from me. The ventilator was turned down to the point it was almost off. Annie was essentially breathing by herself.
He indicated that he would come over after he completed his rounds and remove the ventilator if he could. When Dr. Troung arrived, he was pleased with the results, and took the ventilator out. He was very happy for us, and had a beautiful smile on his face.
I must admit, I did push a little to get the ventilator out for several reasons, of which most were probably not justified. Despite the propofol, Annie was hardly ever asleep. I told them on one occasion to give her more, as she was not resting and too aware of everything that was going on. It was obvious that it’s a very uncomfortable feeling having a ventilator tube stuck down your throat. The doctor said they couldn’t up the medication as it might put her to sleep for good, which was not an option. Being restrained in a bed is necessary, but must be a horrible feeling over five days.
The justifiable reason was quite simple; Dr. Troung told me he likes to work off a seven-day window. Sometimes when a patient is on a ventilator, and every case is different, the ventilator is eventually taken out and they can’t breathe on their own. They quickly panic, go into respiratory distress and some folks die. Obviously, the brain is part of the reason we breathe. Being on a ventilator too long can disrupt the signals that the brain sends. The results can quickly become an emergency. Of course, that’s not normally the case, but it does happen. So I was pushing to make sure she got off the ventilator within that window, especially as she was already starting to breathe over the ventilator.
When they took the ventilator tube out and untied her wrists, she was so happy, and tried desperately to talk. But, she was so hoarse, it was very difficult understanding an excited, rapid speaking hoarse lady. Her voice started coming back clear, the next day.
She still felt ill, and would be in the ICU for a few more days; but she had received a miracle and she knew it.
September 13, 2009: Dr. Tom Moore came in today, as did Dr. Farhart. They were both very pleased as her pneumonia was in retreat and her heart was getting stronger.
September 14th and 15th, 2009, turned out to be reasonably routine days. Annie was still receiving Iv antibiotics, along with her other medications; she still saw her doctors, and had some X-rays. They were making sure she was not in danger of any sort of relapse.
September 16, 2009: Annie was moved out of ICU to general population on Eight Tower, cancer ward. Annie was placed in a private room, in an effort to isolate her from as many germs as possible.
September 17, 2009: This morning Annie started putting the bug in my ear; she wanted to go home.
Dr. Tom Moore came over and spoke to us for a while. He was observing Annie, making an assessment on whether she could go home or not. He knew I would take good care of her, but that wasn’t the point. He needed to know that she was well enough to leave the hospital. In the end, he agreed!
He told us even though he never got a positive test result for swine flu, he was convinced, due to her very rapid deterioration, she probably had it. He couldn’t find any other reason, and swine flu doesn’t always test positive. He told Annie, even though she was in remission, with her compromised immunity, she could still catch any germ out there. So we needed to be careful, and keep her as germ free as possible.
September 17, 2009: Based on Dr. Tom Moore’s and Dr. Farhat’s recommendation, Annie was stable and could go home. Dr. Dang got the discharge papers together and we were “out of there” later that day.
Before I close out this chapter, I would like to mention a few items of interest.
When Annie entered the hospital, from that moment on her treatment was intense and ongoing throughout the day and night. We literally didn’t go more than twenty minutes or so without having a nurse or doctor in the room; hence the name Intensive Care. Her doctors and nurses were wonderful and played a critical role in helping Annie survive this event.
I certainly wasn’t sure she was going to get through this event, but when she did I wasn’t surprised. I had already witnessed Annie survive events that many in her condition wouldn’t have. She was always fighting the odds.
If we put this event in perspective, what were the odds of a multiple myeloma patient with little immunity surviving sepsis, double pneumonia, and most likely swine flu? According to Dr. Tom Moore, the odds of Annie surviving this event would be hard to calculate. His inference was, “a catastrophic event like this would prove to be very difficult for the healthiest of patients to survive.” I was beginning to see that her survivability of such bad situations baffled many people. I certainly didn’t have any answers, other than her tenacious will to live, brilliant doctors, and her faith.
When Melissa and I made Annie laugh, the ventilator made a loud honking sound that could be heard throughout the ward. If you knew Annie’s laugh, you’d understand the noise it made. Annie loved to laugh and when she started, it was usually from deep within and rapid. The nurses weren’t happy with her laughter and said we were stimulating her too much. I respected their thoughts, but didn’t agree. At this point in her journey, I knew that laughter was good medicine and good for her soul. Laughter helped make sense of the insane world we were living in.
One day Melissa walked in the room and said, “Mom, aren’t you ever going to die?” You keep putting us through this over and over again. That was Annie’s, Melissa’s and my sick sense of humor that we had shared for years.
Annie started hauling with laughter, the horn was going crazy, and we got in trouble.
The nurse came running in, giving us a piece of her mind. She had every right to do that; but It happened not long before Annie got off the ventilator, and things were looking good. I told Melissa she had better go home before we lost all our privileges. She was annoyed, but left. That’s just how we were as a family. We found laughter during some troubling times.
Dr. Troung was a very reserved individual, and very proper. After one visit to our room, you could always tell he loved coming in. We always made him laugh.
He once said to me, “Is your daughter here today?” Melissa really got him going, even during the bad times. We as a family never allowed Annie to get too down; we kept giving her reasons to fight. Annie was always so much fun and loveable, and even when she was too ill to laugh, she appreciated the fact that we didn’t act like she was dying all the time.
Dr. Troung was a very reserved individual, and very proper. After one visit to our room, you could always tell he loved coming in. We always made him laugh.
Yes, at times our stimulation of Annie aggravated the nurses. However, their exceptional care for her and our aggravating stimulating ways, with the help of exceptional doctors, and I believe a higher power, Annie survived a very serious event. As I said once before, she could’ve lain down and died, of that, I have no doubt. However, as long as she was willing to fight, her family were going to fight just as hard for her, and so was everyone in the medical field.
as long as she was willing to fight, her family were going to fight just as hard for her, and so was everyone in the medical field.
The Bible verse that Melissa was reading to her momma, Psalms 23, many of you’ve probably have heard before. Here’s two partial sentences from the verse. “The Lord is my shepherd I shall not want; and yea though I walk through the valley of the shadow of death I shall fear no evil.” That was a very powerful message for Annie. I was surprised that Melissa picked up the Bible and started reading to her momma, and chose that verse. It was as if Melissa saw this coming and already prepared herself for what she was going to do. I couldn’t even have found that verse in time to start reading it. I guess Melissa was doing her bit to help reassure her momma, just in case things went dreadfully wrong. Those were comforting words whether one believes them or not. This went on for several minutes and you can imagine the intensity in the room. I’m trying to comfort Annie who’s in obvious respiratory failure; and Melissa is loudly reading a bible verse to her, while Dr Troung and the nurses’ are just trying to make meaningful decisions as quickly as possible.
I’m going to close this chapter with one very precious moment; a moment that will stay with me until my memory fades.
On day four of being on the ventilator, Annie was moving her hands around motioning to me. I had to use all my mental capabilities to figure out what she needed. It went on for a few minutes, before I asked her if she wanted to write something.
She nodded her head yes.
I was getting ready to break the rules for the second time. I went to the nurses’ station and got her a piece of paper and pen. Remembering the last time I loosened her hands, this time I loosened them just enough so she could put pen to paper.
The first few words I couldn’t understand. She got frustrated, but hung in there. She then wrote, “Am I going to be ok?”
I reached down and put my hand on hers and said in a tender voice, “It looks like you’re going to be just fine, Annie.”
The next note she wrote I will keep forever. It simply said, “Bobby, I love you.”