In a recent post, Mike's doc talked about how Mike was intubated at Christmas and how dangerous that was. I know many in the family have not been told about what happened the week before last Christmas so I will recap that here. I think it was a significant event that is weighing in on many of the decisions that are being made right now. I hope this helps you to understand where Mike has been and where he is right now. Mike is going to sign an order - Do Not Resuscitate. He has thought a long time about this decision and has decided that now is the time.
On December 18th I took Mike down to Madison to be admitted for another admission. He was pretty sick. He needed Oxygen but that wasn't anything new. I was glad he got down there when he did. He couldn't do PFTs right away as I recall but did them on Friday and I think his numbers were around 18 or 19%. I know I wrote this all down somewhere but I can't find it right now. I knew he needed some rest and it was right before Christmas so I opted not to go down to see him on Saturday but wait until Sunday. Mike just wanted to sleep. On Saturday evening I tried to call Mike and I didn't get an answer. I thought that was odd. A little while later, around 7:30 or 8 I spoke to Mike. I can't remember if he called me or if I called him but it was quickly apparent that he was having a hard time breathing and speaking and he was impatient. He told me that I needed to talk to the doctor. The ICU doctor came on the phone and said he was in Mike's room watching him closely. He said Mike had been having some hemoptysis (coughing up blood) and they were concerned. He said he had been following Mike for a couple of years and had never seen him so anxious. I said I was coming down and he said, "That would be a good idea." I started packing immediately. Just threw a few things into a bag quickly. Before I could leave he called me back and said he had decided to move Mike to ICU he would see me as soon as I got there. I thanked him and told him it would take me 90 minutes to get there. I grabbed my cell phone and jumped in the car and headed toward Madison.
On my way down to the hospital I called my brother David. I forgot all about the fact that he is in the Eastern time zone and it was late. I told him I was really concerned because I had never seen a CF patient in end-stage CF intubated and survive. I regretted not having talked to Mike about this situation to hear what his wishes would be if things did not go well.
You would think that the trip would have been miserable but I prayed and received the most incredible peace. Peace I have not experienced but a few times in my life. I was praising God and thankful for his blessings, thinking about how I had been to church earlier in the evening and the entire church had prayed for Mike. It had been a long time, maybe even years since I had asked for a prayer for Mike at the church. I was thankful that Pastor Haugly gave such a heartfelt prayer on Mike's behalf. And then my thoughts and peace were interrupted by the ringing of my cell phone. It was a nurse calling from the ICU. Mike's breathing was more labored and they wanted to intubate Mike she said. She said the doctor believed that Mike was bleeding out and that they didn't have much time. He wanted to bronch him but thought that by intubating him they would be ready to immediately try and fix the bleed if they were lucky enough to find it. I asked if I could talk to Mike and she gave him the phone. I knew he could hear me so I said, "Mike, do you want them to start before I get there?" Mike confirmed NO. I said, "Then tell them to wait, I am 30 minutes away." I hung up and sped up. I got there about 20 minutes later. I walked into the ICU unit and immediately knew which room was Mike's. It was the one with all the doctors and nurses standing outside the door. I walked close and they all walked into Mike's room and started to prep him. As I said hello and good-bye they were preparing for the bronch. Within a minute or two Mike was unconscious. I stayed and watched while they intubated Mike. I wondered if I would ever get to talk to him again.
Another doctor began the bronch. I watched with the other 3-4 doctors who were in the room. Interesting....no blood. I heard another doctor comment, "it must be in the lower lobes." She probed lower............I watched. Nothing. Yet another doctor in the room commented. Finally she probed to the base of one lung. Nothing. Then the doctor who had called me spoke, "That is amazing....there isn't any blood!" She continued to probe, entering his other lobe. No blood. "I expected to see so much blood we wouldn't even be able to find out where is was all coming from!" the doctor who had called me explained. By now all the doctors in the room were mystified. People, there was not one drop of blood. Not even a small trace to indicate what two of the doctors saw clearly in his room spit out on to his hands and tissues in all its bright red glory. NOTHING - no trace. A miracle. And right then and there I knew we were given a Christmas miracle. So many people praying. Pastor Haugly leading them in prayer just hours before all this began. No other explanation. A miracle. But Mike wasn't out of danger. He had to be pulled from the vent.
The doctor told me that this would all be traumatic for Mike's lungs and that he was going to keep him on the vent until the morning. That made me uncomfortable. Everything I had read, all the research I had done told me that the longer he was intubated the harder things would be. I trusted this man's judgment. I never left the room. I prayed. I waited. I watched. I prayed.
It was awful. They had to strap Mike down because even in his state of unconsciousness he would try and pull the breathing tube from his throat. I watched him struggle and gag and cough almost constantly. He had a really good grip on it once and I yelled for a nurse. They kept having to give him extra drugs to keep him down. The hours seemed like days until the morning. I knew the church would be praying again during the services. A new doctor was on the floor. They would try and wean him off the vent. WHAT? I was concerned. I knew that a wean wasn't going to work most likely. They tried and it didn't work. They said they would try again in an hour. I was weary with no sleep. By now I had gotten a hold of people and they were on their way. I knew the church was praying. All my brothers and sisters in Christ praying for Mike. I called my brother David to tell him that I remembered there was a CF woman just recently who had been vented and lived through it. Wanderlost. She made it. . . There was hope. Always hope.
They tried to wean again. It didn't work. I was broken. I was thankful Big Mike was there too. The doctor who had called me the night before came back. Boy was I glad to see him. He told Mike's nurse to prepare because he was pulling the tube in an hour. NO WEAN! I was glad. It made me anxious but my heart told me it was the only way. It seemed like an eternity. His nurse was awesome. They pulled the tube. Mike struggled a bit but he is a fighter. It was a long slow process. He was on the most oxygen he had ever been on. For about a week I wondered if he would ever get off the oxygen again. He was so weak. He didn't talk much for days and days.
The Van Deurzen's made the most awesome video for Mike. You can see it here:
One more round!">
Mike rallied. He spent Christmas in the hospital. Mike Sr. and Katie spent Christmas Eve with him and I was able to be with him Christmas Day. The best Christmas gift of all.
So the reason I share this with you now? It wasn't pretty. It truly was a miracle that Mike survived it all. As "Sue" said, the chances of Mike surviving another episode like that are not good. Mike has decided to sign a DNR order. Thank you for respecting his decision.
Mike has a goal. He wants to spend Christmas at home this year.
Mike and I had a couple of meetings today. One with a woman from a county agency called "Aging & Disability Resource Center of Fond du Lac County" and another with the Agnesian Hospice Center. We are looking at all options. It would be nice if Mike could spend some of his hospitalizations either in Fondy or at home. Both agencies said that he would qualify. It's all a matter of choices etc. Maybe they won't be able to help....maybe it isn't quite time . . . we shall see.
What was interesting was the look of shock on each of these women's faces as Mike described what a typical day looks like for him. One woman has been with her agency over 14 years, the other for a long time but I don't remember how long and neither one has experienced anyone with CF and no one struggling with all that Mike does....CF, Diabetes, pills, treatments . . . etc. This just seems so every day around here. But to hear their comments and see the look on their faces really reminds us how much these CF patients go through. Nope, not as bad as some...........but significant. Truly significant.
Mike left and went to his dad's house after the meetings. Because he could. This week that is possible. A blessing. Last weekend he even got on his motorcycle. Who would have ever thought. We are so blessed. So thankful for these moments.
Thank you for your continued prayers and support.
Blessings to you! Love, love, love . . .
P.S. To the Van Deurzen's . . . that video was awesome. What you did helped Mike to rally. He is so blessed to be a part of your lives. . . One More Round