From Despair to Hope.

Posted 2/3/24.

Lived 9/11/21- 9/12/24

I drove over to Providence knowing there would be a lot of information and possibly not great news. For the surgery to last 15 hours I assumed there were problems. I was not wrong.

The surgery started as usual for an aortic dissection, with the valve needing to be replaced and a portion of the aorta replaced. Dr. Ritchey was expecting some issues from Mark having been on blood thinners, but it was so much worse than anticipated. His remark was it is the worst blood loss with which I have ever dealt. Mark lost 40% of the blood in his body. Just controlling that was a major issue.

The ascending aorta had to be replaced as well. There were other procedures done but these were the major issues. They weaned him off the bypass machine and were preparing to close him up. This was around midnight. Just as they were getting ready to close, his chest filled with blood. Another disruption occurred, this time at the aortic root. They attempted to repair it but between the tear and the needle holes from trying to suture, it tore a hole requiring the surgeon to put his finger in the tear while they worked to replace the root to keep Mark from bleeding out. Of course, to do this he had to be placed back on the bypass machine again.

Finally, they repaired everything and took him off bypass again, but made the decision to leave his chest open because of how critically ill he was.

Now, to be clear, the Doctors did not give me all this information. I will tell you what they told me. I had access to Mark’s My Chart account, but within an hour after his death the account was shut down. I put in a records request because I needed to know what happened in detail. Two weeks later I received 1700 pages of the history of his stay. I read it all.

What Dr. Ritchey had to tell me was that his kidneys were destroyed, his left leg was not getting enough blood supply and would most likely require amputation at some point. He was in severe shock requiring massive drugs to keep his blood pressure up. The dissection was extensive, going down into the arteries in the torso and in the left carotid artery. I could barely comprehend what he was saying. I was trying to write it all down so I could fill in our kids.

I texted all the kids and said you need to come to the hospital now. This is so much worse than we thought.

They all arrived, and I relayed all the information to them. We were all so upset about the possibility of losing his left leg. It was his good leg. His right leg was compromised by cancer and how was he going to walk? We were horrified at the thought. The kidneys were also such a shock. He would have to be on dialysis for the rest of his life.

The next thing we knew was he was being taken back into surgery. They wanted to put stents throughout his arteries and veins to open the blood flow. All his vital organs were being affected by the lack of blood. He was in surgery for another four hours, but they finally had to stop, he couldn’t tolerate it anymore. They were unable to do the graft from his right leg to his left to get blood flow restored to his leg.

Dr. Kim, the vascular surgeon, talked with us. He laid out how seriously ill Mark was. He stressed that it came down to life over limb.

It is funny how you can think for one minute, no, you cannot take his leg, and the next minute think take it, just keep him alive, we will figure it out. My children and I were in such shock. So many tears, panic attacks, just allowing in that thought that we might lose him.

And that began the longest four days of our lives. The low point on the 11^th was when Dr. Ritchey said, I think we need to take him off the full code and put him on DNR.” It sucked the wind out of all of us.

We were all able to go into his room and talk to him. He was intubated, his chest was open, he had at least 12 IV lines and several lines running into his chest and heart. I was so proud of my kids, a couple of them had difficulty being around medical stuff but they marched right into that room and told their dad he was going to make it. We all asked him to fight as hard as he could, that we loved him so much and couldn’t bear to lose him. Of course, he was sedated, but we hoped there was some part of his brain that could hear us.

We finally all went home, it was such a blur. By 3 am the next morning we were all awake and texting. Everyone came to my house for coffee. Sarah studied the notes in my chart to see what happened during the night. We figured out what some things meant fast. Lactic acid was a huge indicator of how well he was doing. We knew a big issue was also the fluid that was collecting in his body from all the IV’s. Since his kidneys were not working, he would have to be on dialysis, and then a different thing that removes the fluid.  We all gathered back at the hospital; we spent so much time by his side. His nurse, Nicole, was amazing. Even with all the monitoring she had to do she never once acted like we were in the way or asked us to leave.

Then at 2:30 we met again with Dr. Ritchey. He was seeing some improvement! Mark was clearing lactic acid and needing less blood pressure meds. He was on six, at maximum dosage, so it was a huge step to be able to lower those.

 He said I want to put him back on full code. We were so elated; we had so much hope.

We knew the recovery would be long, but we were already planning how to arrange the house to accommodate all his needs. I was just sure he was going to survive. From despair to hope. What a roller coaster. Climbing out of that despair and feeling hopeful! The problem is, with a roller coaster, it eventually goes back down.