When Julie started to wake up from sedatives a few days ago I was faced with happiness and guilt at the same time. I had spent Sunday and Monday preparing for the worst; my hoping for the best was waning. I was in a split frame of mind nonetheless. I had sat my family down including my siblings and their children and explained the gravity of the situation. I really didn't know how things would turn out and I still don't. Inevitably the negative thoughts can overshadow the positive ones. It wasn't until Tuesday night when I spoke to my mom about faith that I was reinvigorated in my resolve that anything, truly anything is possible. I recounted my resolve in November when Julie was admitted and intubation looked very possible. In the last paragraph of Moving Along we were faced with grim possibilities, but were able to hope for the best and deal with what came. We took the facts at face value and focused on what we hoped for. It seemed to work.
It has become increasingly clear to me that as we all are faced with undeniably tough decisions and unknowns in our lives, we tend to focus too much on preparing for the worst. As I have been let down many times, I have developed an opinion that this is wasted energy. While I still think it is important hear and understand the negative possibilities or prognoses, dwelling on them and focusing on them has brought no added value when when they have come to pass. It has brought anxiety, worry, fear, and other thought processes that can inhibit my ability to function in other aspects of my life. I haven't found a way to prepare for a negative outcome by "facing the facts" in a way that makes it any easier if it happens. I don't intend to keep trying. Julie was told she may not be able to come off oxygen. So far, they are correct, and this may ultimately be the case; but we will still push for that ceiling of coming off oxygen and being able to travel with her family and work out again. Julie loved to go to Zumba classes, and most of all she loves trips. This ideal is a target for us to push the envelope for.
The day after Julie was intubated, she was writing squiggles and communicating. Her PaCO2 had dropped from 106 to 61; pH was in the normal range. That afternoon it came up to 74 and later came back to 63 on Wednesday. The next one we did she was back up to 73 and her pH had dropped below 7.3 again. Ideal is between 7.5 and 8.5. Even though these numbers were jumping around, her needed pressure to ventilate was dropping. We started with a peak pressures in the mid 40 cmH2O range. By today she was down to pressures around the mid 20's to ventilate. Her ICU doc told her on Thursday that he was really impressed we didn't ever need higher pressures to ventilate. She never needed more than 40% oxygen and she may have received too much initially. Her PaO2 was double what it should have been by the middle of the week. The team here has been so thorough and preemptive in their approach. Watching her kidney function they dropped our beloved Tobramycin and replaced it for Cipro. While her Prograf levels were coming down they restarted them at more than half the dose so she wouldn't bottom out and have further rejection of her lung graft. They have been attentive and caring to Julie. Always looking at the next best step.
Julie was standing on Wednesday and Thursday and on Friday she walked about 15-20 feet with the tube in her mouth. As the week progressed, she started to ask those with a cough or sneeze to put a mask on even though it isn't policy. She started to get more involved in her care despite being exhausted. I knew we were on the right track. When she really woke up and was able to write on Wednesday, I asked her some questions. I knew for a very long time that she didn't want to get intubated. It wasn't until recently that she considered it. I told her about the predicament we had been in Saturday and Sunday. When we asked her she would always say yes most likely because she was air hungry. I knew that with a CO2 in the 80's it wasn't likely she knew what she was saying. When telling her about the conversation we had with the Dr. to intubate, I told her I really didn't know what to do. We probably asked her 25 times if she wanted to do it. She wrote down two things during this conversation: "I'm sorry" (When I teared up from stress for one of the first times) and "I think we made the right decision." I was so relieved. Her life had been in my hands and no matter how many times we have talked about this, it was the most difficult decision I could have made. I knew we were on a time clock. To be frank, she was lucky to have made it through the procedure. I asked her if things were to get worse what we should do. She gave me a look that took no words to describe. "Am I stressing you out?" I received a nod yes. Obviously this is not something anyone wants to talk about, but it is something I want to know when she is in a coherent state of mind.
On about Thursday Julie started to ask 'how much longer?' on with her pen and paper. She wanted ice chips or something to soothe her mouth and throat. Tey could only swab with sponges filled with water. She was visibly getting more and more uncomfortable. This was to be expected since they reduce the sedatives as aggressively as they can. Otherwise she could become dependent on the ventilator and stop working her diaphragm muscles. We had to continue to encourage her to push through the discomfort. Each time she had a treatment from respiratory therapy, they would push a tube into her lungs and suction out what they could. This was extremely uncomfortable. Last night she wrote me the following; "How do I die comfortably?" She had had a really effective treatment bringing up a lot of the mucus that night. So much so that it came past the cuff and out her mouth. She wrote me "I really thought I was going to die tonight." I had to explain to her that when she is intubated, it was near impossible she would die. It would make her breathe even if she wasn't coughing. This is why people can stay on a vent for a very long time.
Yesterday for about 3 hours and again today for about 6 they tried her on a spontaneous mode where she was doing the work to breathe and the machine wasn't assisting. Initially it was hard to do but she would get used to it. Her asking about getting the tube out became regular. They wanted to see what the blood gas was when she was ventilating on her own. They were impressed with how well she did. However the CO2 came back at 73 and the pH was under 7.3. We went back to control mode where the machine helps finish the breaths and gives a breath if she doesn't take it. In the morning she did this again, Two things happened; CO2 stayed the same at 74 but the pH came back up to the low 7.3 range just below normal. Having her pH out of normal range is what causes other cells and organs to stop working correctly. They came in and spoke with her about a plan. They were on the fence since the CO2 hadn't dropped. They knew she wanted to come off. They first told her what they hoped to accomplish if she chose to be extubated; to come off to BiPAP and hopefully continue to ventilate and bring her CO2 down and pH up. She would then be moved to Optiflow nasal cannula, and finally nasal cannula before leaving. They talked to us about the risk if they weren't able to drop her CO2; that she may need to be re-intubated and have a tracheostomy. That would result in being on the vent for a very long time, possibly months. This was the road I was really unsure about where she stood. The doctor said, "You've been dealt a really tough hand. You have permanent lung damage." This is where we are a little nuts. We still know that she has lung damage, but her lungs are from someone else. They have a different DNA structure reconstructing them. We are walking on a dream, but its worth living for. Who is to say it is permanent? After all her transplant doc told her a while back "Don't listen to me. Just keep trying and pushing and living." She knew there were risks to coming off the vent, but she followed up with "I think I need to try; Let's take it out."
So now I am watching her rest, really rest like she does at home. Her respiratory rate is near normal in the mid teens, her heart rate is hovering around 85-90 which is the lowest it has been since the summer, and she is oxygenating well. Her tidal volumes live in the 500 range (they were in the 300 range when on spontaneous mode on the vent). It is very early, but she is headed in the right direction. She has been on nasal cannula a few times and does okay for about 3-5 minutes, but she clearly needs the ventilatory support from BiPAP for a little longer. We are still on a bit of a time clock, but not one that seems so eminent. She knows the negative possibility, but just as with having a baby, she at least wanted to try.
We saw traffic on this blog explode last week. There were 23000 page views in the last month. The most we had in the past was about 16000 the week she had her transplant. Typical traffic through chemo was 2000-6000 views/month. There is no doubt that the countless prayers, fasting, thoughts, mojo, and positive energy pulled Julie through this week. As far as I'm concerned, this is all from one source in God. The incredible staff and attention they have given my wife has created an environment for her moxy to blossom along with this faith. As you can see we are far from done. No one is ever done. A lot of people want to be released of this and hope she can live a good life or that we can accept if the time has come for her to leave. One thing was made clear to me this week: Two people are in control here and I am not one of them; Julie and her Heavenly Father. Many of us thought it would be tough for her to pull out of this. She has chosen to fight though. WE should support her. No matter how long it takes. She is pushing the odds against her...and today, she won. On to tomorrow. It is another day. God Speed everyone. My gratitude overflows.