In order to be listed for a lung (and possible liver) transplant, the transplant team decided that Gessner needed to undergo a TIPS procedure (see previous posts for information about this). He had the procedure on Thursday, October 21st. There were major complications during the procedure and they nearly lost him. But in true Gessner fashion, he was off the vent and home the very next day! These miraculous recoveries have been his MO for awhile. It was quite a roller coaster.
On Sunday afternoon we called his doctor to report increased sputum production and a change in its consistency. The doctor told Gess to start on inhaled TOBI. Gess continued to deteriorate, feeling short of breath and retaining a lot of fluid. We ended up at the ER and he was admitted again. The doctors thought that the symptoms were being caused by all of the fluid (including 7 units of blood) that Gess was given during the TIPS procedure. The doctors were hesitant to use diuretics because they can tax the kidneys. Gess started to feel somewhat better and was stable, so he went home again. A couple of days later he was back in the ER, feeling very short of breath and that he was deteriorating. He told me several times that he didn't think that he was going to make it--words that haunt me now.
The doctors decided to add antibiotic to the mix and give him diuretics to make him release some fluid. He was in a lot of pain and also very anxious because of his inability to breath. The doctors put him on ativan and demoral. On Friday night (October 29th), his breathing got worse and he became extremely agitated. He was on 100% oxygen and still gasping for breath. They decided to transfer him to the ICU, but that transition too awhile. It was horrible watching him struggle to breath. All I could do was force him to look into my eyes and try to slow down his breathing. It seemed to help a bit, but not nearly enough.
He was finally transferred to the ICU and thankfully his normal CF doctor was still on the ICU service. They tried him on a bi-pap to try to help his breathing, but that was unsuccessful. His CO2 levels skyrocketed (to about three times his normal--already elevated--levels) and putting him on the ventilator was the only option.
On Saturday morning they tried to take him off of the vent, but were unsuccessful. He had increased fluid in his lungs and they gave him more diuretics to get off the excess fluid. They "dried him out" but unfortunately he still had trouble breathing. For the first couple of days they had a hard time keeping him sedated enough on the vent because his blood pressure was unstable. Those days were hard because he was in pain and wanted the breathing tube out. By this point they had also put in a feeding tube to help give him some nutrition. He hated having the tubes in and had to be restrained so that he wouldn't take them out during moments of consciousness.
One of the memories that haunts me when Gess would wake up with terror in his eyes to realize that he was vented and restrained. Thankfully the terror subsided quickly when he saw me and I reassured him, but it was very difficult to see. I am comforted to know that he was highly medicated, but wish that I could have spared him that.
After they were able to get most of the excess fluid off, the doctors concluded that, unfortunately, infection was the real cause of the problem. The doctors added another antibiotic and we all hoped that the meds would address the infection enough to all him to breath on his own.
On Sunday morning they made another attempt to take Gess off of the vent and it went very badly. His CO2 levels got to high and his breathing was much too labored. I had taken the night shift and so was home when this happened, but Gess's dad was there. His dad said that it was horrible to watch. When Dr. T told Gess that he couldn't get off the vent that day Gess snapped a pen in half with one hand. He was still fighting, so that was encouraging.
Dr. T. had Tom call me and wake me up to come in to the hospital for a family conference. I knew that it couldn't be bad news, and got to the hospital as soon as I could. The walk to the family conference room was long and tense. Dr. T and the pulmonology fellow were there. The room was one of those rooms where they do patient education. There was a small round table with chairs, a sofa, and a book shelf. It was disorganized and seemed thrown together. Tom and I sat on one side of the table, the doctors on the other. Dr. T paused before he spoke, his face telling the story before he even opened his mouth. Things were not looking good. They needed to get Gessner off the vent as soon as possible. The infection was making it difficult. His kidneys were failing too. We asked question and got the answers that I already knew, and certainly didn't want to hear. One week, two max on the vent. Difficult days ahead.
Dr. T was scheduled to go off the ICU service and also going out of town for a conference. He assured us that the new attending was good, that he would be in contact with her daily, and he would be back on Tuesday. I cried. Dr. T told me to go back home and get some sleep. I'm not sure how I was supposed to do that knowing that my husband was hanging on to life by a thread.
The good news was that his blood pressure was stable and they were able to keep him more sedated. But any time they moved him or did CPT I could see the pain in his face. He wanted the vent to come out and was mad when I told that it couldn't. He told me he loved me in sign language and I held his hand as much as I could. That night was uneventful, so I hoped that meant that he was getting rest and healing.
On Monday morning they tried to take him off of the vent again. It was obviously not working, and they only tried for about five minutes. As they tried to let him breath for himself, he worked for each and every breath, using his accessory muscles to drawn in the air. He was not ready so they increased the sedation and turned the vent back on completely.
At rounds we got more bad news. His kidneys were not doing well, so they adjusted his antibiotic dose. The plan was to continue to wait and see. Later they discontinued another of the antibiotics because his kidneys continued to deteriorate. He couldn't tolerate the only thing that could save him. He did not interact with us that day, he was sedated but would cough and was in obvious pain during CPT. It was horrible to watch and Tom and I decided that we needed to talk to the doctors again. It was late and only interns were around, so we had to wait until morning. Gess's sister D arrived that evening and we filled her in on everything.
On Tuesday morning I waited for the doctors with dread. Of course they were late in rounding. Earlier the RTs said that Gess's chest xray looked worse and they were not going to attempt to take him off of the vent. When the doctors came they confirmed that he was getting worse and that his kidneys could not tolerate the antibiotics. We requested another family conference, knowing that Dr. T was back in town. It was set up for 2:00 pm. D and I me with him and the ICU attending. We all knew what needed to be said, but I could barely stomach the walk to the dreaded conference room.
Dr. T confirmed what we knew: Gess was not getting better, but was getting worse. The chances of him coming off the vent were not good. If he could make it off the vent, he wouldn't get back to the level he was before the TIPS procedure--a level that was barely tolerable. He was not going to get a transplant. It was time. Gess was such a fighter, but was also a realist. He wanted to try for a transplant because it was his only chance at a better life. He knew that it was a long shot considering his unique circumstances, but the hope was worth the risk. Unfortunately, it wasn't to be.
I made the decision that no one should have to make. It was the right decision. Family agreed. The doctors agreed. But my heart broke. I wanted Gess to be free of pain and knew what his wishes were--we had talked about it many times--but I didn't want to believe it. It was the hardest thing that I ever had to do.
As soon as I made the decision the doctors and nurses started to get things ready. Gessner wanted his organs and/or body donated to help others so the nurses started making phone calls. They brought in a tray of snacks and beverages. They closed the blinds and gave us privacy. One of the most precious gifts was that the nurse moved Gess over in his bed so that I could lay with him. Not being able to be close to him was one of the hardest part about this, so I will be forever grateful for this act of kindness.
Later the nurses cleaned Gess up and removed all of unnecessary tubes and wires. He looked so much more peaceful. I kept waiting for him to open his eyes and say he was ready to come off the vent. To sit up and say he was ready to go home. I wanted him to come back, I wanted him to rebound, I wanted him to be alive.
We waited for his mother to get in from Colorado. Friends came and we let friends and family spend time with Gessner. When his mother arrived we let the nurses know that we were ready. The doctor asked me some questions. Questions that I don't remember--something about whether I wanted the tube to be removed completely or left in. Questions I had no idea how to answer. It was shift change, so it took awhile for the nurses and RTs to get ready.
Finally it was time. I sat in a chair on his right side, holding his hand. His mother stood across from me on the other side. His sister and a couple cousins were there. Two close friends were there too. We sat in silence for awhile as the nurse injected pain medication and sedatives while the RTs slowly adjusted the vent. We cried. We watched. It actually happened rather quickly. He breathed and then he didn't. I threw up. I couldn't believe he was dying. So many times I wanted to scream and tell them to stop, that it was wrong, that Gess was going to get better. I wanted to throw something. But I couldn't. All I could do was hold his hand and cry as he faded away.
The worse thing was that after he stopped breathing, his muscles started to contract. No one warned me about this and I thought that he took a breath. I yelled and asked what was going on. I was hysterical. My friends comforted me and told me what it was. The RT confirmed--he still had brain activity, but he wasn't in pain. My friends forced me to look away. I sat with him as long as I could, but I saw his color change. He was gone and he wasn't coming back. I had to leave. I couldn't watch it anymore.
I had to sign a consent for an autopsy and gather his belongings. My friend took me to her house and we cried. I was numb, scared, and so sad. I hoped that I would wake up for my nightmare. I still do.
Michael Gessner Brown, the love of my life. April 13, 1977-November 2, 2010.