So, he was admitted to the ICU. Over night he had been on what is called non-invasive ventilation which is a tight fitting mask sealed over the mouth and nose attached to a mechanical ventilator and it delivers pre-set volumes, pressures and oxygen. (Hereafter may be referred to as mask vent.) One benefit of mask ventilation is that the person being ventilated can remove the mask for water and for meals as well as medications without having other tubes placed to facilitate that. So he tolerated that for several hours. During the night other tests were performed to help determine all the obstacles we were to face. One is a test for deep vein thrombosis (DVT) also known as blood clots in the deep veins of the extremities, most usually the legs. Well, that test revealed DVT in both legs! If you may recall, Rick had a history of anemia including his platelets and that made blood thinners somewhat dangerous--not to mention his 6 weeks ago craniotomy for tumor--higher risk to bleed into his brain. But then the risk of one of these clots breaking off and going to his lungs, heart, kidneys...you get the picture --is very high! So what to do becomes the question. After much debate it was decided to place a filter in his inferior vena cava to "catch" the clots and help prevent them from traveling to those vital organs! This was done on Sunday by the time he'd been an inpatient under 12 hours. Also low dose anti-coagulation was given. In the meantime the pulmonologist had visited, and he took me over to the view box to look at Rick's chest x-rays. Now mind you I'm just a nurse, not a physician or even close but I know a bad chest film when I see one and I saw one. I knew we would be in for a long battle.
Sunday night he rested well and when Monday morning rolled around, he was actually able to go on a "high flow" nasal cannula that administers oxygen in percentages rather than liters per minute under some pressure similar to some of the pressures the mask vent delivers. He was able to eat breakfast and stay off the vent for most of the day. He had a few visitors and was able to see many of them.
Monday night and Tuesday morning were a different story! His breathing deteriorated overnight tremendously. He was asking for the "breathing tube" by the time the pulmonologist rounded. He was absolutely worn out from his work of breathing. Dear friends Kim and Mary came in, assisted with the placement of the tube and helped adjust the vent to make him as comfortable as possible. They also placed him of a medication known as Diprivan. This is a sedative only administered to patients in surgery, having a procedure with an anesthesiologist or patients in ICU's on mechanical ventilation with a stable airway. Diprivan would be our friend. It has a short "half-life" meaning if you turn it down you can easily keep comfort while maintaining an awake state meeting certain guidelines. He was breathing easier and was finally comfortable.
Over the next 5 weeks, Rick had several episodes of desaturating which means his oxygen level would fall dramatically. He would struggle for every breath! There were several times when we did not know if the next breath would be his last. God blessed us richly through out this entire ordeal. Every time his breathing would worsen, my friend Sandy would show up or call me and she could tell by the tone of my voice how things were. Next thing I'd know she would be there. And there was Ray and Kathy, Robbie and Connie, Betty and David, Brother Stephen and his family, and so many more were there every time we needed them! (without our calling them to come!) Aunt Bonita and Aunt Erma were diligent about visiting many times a week, Uncle Gary, Avery, my parents, Keith, we'd look up and there someone would be! Just when we needed them. If I left out your name, please don't be hurt. I didn't do a very good job at keeping a list of everyone who came day in and day out.
Rick's sisters Beverly, Teresa and Sue were instrumental in helping stay with him. If you knew Rick, you knew he loved his family. You also knew he was kinda needy when he was sick. I stayed day and night for the first almost week, only going home to shower and change clothes. Then Beverly and Teresa wanted to take turns staying at night. When his breathing was "stable" I would go home and let them stay with the promise to call me if he worsened overnight.
Somewhere around the 3rd week, we had to have a surgeon perform a tracheostomy and a feeding tube placement as he was not really progressing to coming off the vent. I actually had them perform an MRI of his brain before allowing the surgery. I wanted to know there was not a tumor in that brain of his. There was not a definite tumor, I sent the film to Dr. Hampf for him to review, he said if he was me he would go ahead with the trach and peg and we could worry about what the object was in the tumor cavity later-could just be natural part of healing. We did go forward.
Finally on February 26, he moved to Commonwealth Regional Specialty Hospital for long term vent care.
We had some good days up there on CRSH! On March 3rd, he was completely off the Diprivan, very animated, joking with me and had weaned off a little of the pressure it took to ventilate him! This was great! I pulled my chair up beside his bed and we took a nap. I woke up first and was watching him sleep without medications for the first time in almost 6 weeks! This was great! He woke up, turned towards me and mouthed the words "take me home" and looked at me with those puppy dog eyes. I wanted to take him home! But I knew I could not do that yet, but if he continued to progress as well as he had the past few days, maybe in a couple more weeks?? March 4th Beverly stayed with him. He had a pretty restless night. He was a little anxious. He was like that sometimes without me there. They didn't call me because we'd had those nights before, and he'd be OK in the morning and I had a "hair cut" appointment long needed. So, on March 5th I stayed home later than usual with one of Rick's sisters coming in earlier for me. That was the first day I did not come in at 6am. About 8:30 am, Teresa called me, he had become much more restless, increased work of breathing and they had to return the vent settings back to where we were when we were in ICU. He was so anxious. I was on the way in, and I called Sally to go stay with him until I could get there. (*I'm only 15 miles from the hospital )Sally is my boss, but more than that, we are friends. We go back a long way. Rick knew Sally and was more comfortable with her there until I could get there. When she went in, Teresa said he grabbed her hand and kissed it. He was comforted by her presence. Folks, you just don't know how special that was to me! I arrived just after that and the Diprivan was taking effect. He knew I had arrived but barely. He was fairly heavily sedated because he was working so very hard to breathe. Debbie had planned to stay on Friday night, but because of his worsening respiratory status, I told her I would be staying. He remained sedated overnight.
Saturday morning, his breathing was very labored. His vent was "maxed out" and there was no place left to go. We had been there before in the ICU several times and he would rally fairly quickly. About 1:30, I ran downstairs to subway for a sandwich, came back to the room and ate the sub. I must have dozed off for a few seconds, but at 2:00 pm, something startled me. It was his breathing. It had changed dramatically! I caught a glimpse of his feet, they were purple. I gasped, pulled back the sheet and saw that he was mottled and purple from the waist down. This was not good. I called his nurse to come into the room. It was time to let him go. That was the hardest decision I'd ever had to make to this point in my life --> making my husband a "no code blue". When I saw how he was breathing, his color, I just knew the end would be that day sometime. You just knew. I called his sisters and our kids and my parents and others that wanted to be there. Some of them called others. We gathered by his bedside. We had many friends and loved ones in and out of the room. At about 6pm, Noots Simmons came in and sang Rick's favorite song, "I'm a winner either way" which you can look up on you tube and the closest to Noots singing is Byrd Youmans singing it. Beautiful. If I can figure out how to add it here I will. Just after that, his breathing changed again and he was "asynchronous" to the ventilator. This means he was breathing against it with every breath. His neck was beginning to swell from the pressure. Another decision: remove him from the ventilator or let him struggle against it. There was no choice about that. I asked Jayme to come back in with the respiratory therapist. They agreed, called the Dr. and we removed him from the machine. They placed him on oxygen via a trach collar just fitting loosely around his neck. He was so much more comfortable. Keith and Carol were there with us, most of the family, both our kids were there. My parents were at my house with my grandchildren. They are too small to be experiencing all this.
Rick was kept comfortable with medication as it was needed. At about 9:25 pm Rick's last breath left his body. He was surrounded by people who loved. His heart stopped beating and that wonderful man slipped out of my life. He did not struggle anymore. He did not suffer any more. He was gone. I missed him. I didn't want to leave him there. It was so hard to do. But you know what? There are things much worse than death! I am serious! There are. He is in a better place now, no more struggling for his breath. No more pain, no more surgeries. And I am not strong. Not at all! This has been the hardest journey I have ever had to make. I thought his receiving the brain tumor diagnosis and surgery were hard. Looking back, those were a breeze compared to his last six weeks! Those desaturations were most likely particles of those DVT I told you about breaking off and going to his lungs despite having the filter and despite being on anti-coagulants. And that last day, being mottled and purple from the waist down most likely meant a much bigger clot had dislodged and either clogged the filter and /or gotten around it and got to his lungs and most likely his mesentary (blood vessels that feed the inner parts of your middle body). There was no recovering from that. There were other signs of that that we won't discuss here.
I also want to let you know that for those 6 weeks and 2 or 3 weeks after, my co-workers in CCU were the best! They visited, brought food, sub-way cards, cokes, snacks, money, they prayed for us, they were never more than a phone call away! They are the greatest co-workers anyone could have! I did not work for about 2 months, not including the time surrounding the tumor diagnosis and surgery. They chipped in and covered shifts. I could never repay their kindnesses.
To be continued.....
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