After talking to all three doctors, I am ready to document our conversations in a more calm manner. The options are still not options to me, they are just unacceptable, but we can't do much about it.
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March 27 - Chief - Nightmare Conversation
This day, the Chief was the doctor on duty. She suggested that we should start thinking about options for Logan. She stressed that we don't have to make any decisions yet, but we should just start to think about what will happen. I went with her and a social worker to a consultation room and she laid out the two options to me, in a very realistic manner. She definitely was not sugar-coating anything. In a way, it was cruel, but in a way, I appreciate the honesty.
The Chief has pointed out that Logan's condition has worsened since he was admitted. She mentioned that it's been a week since she last saw Logan, and from being able to be on cpap and breathe on his for a few hours a day, to right now being on the ventilator full-time at a rate of 20 breaths per minute. Logan does not seem to be getting any better. She is fairly sure that Logan will just continue to deteriorate from this point onwards. We are still waiting for blood test results for Mitochondrial Disease and Lysosomal Storage Disease. It's also very likely that all the results will come back negative, and we will never know what's going on. She explained to me that Logan has no chromosome abnormality. He has no isolated muscle problem but his low tone is adding to his breathing problem. It appears that his brain stem is not regulating his breathing.
Option 1 - Tracheostomy and G-Tube for feeding
It would be enough to survive, but Logan will likely be on the ventilator forever. He MIGHT have some intellectual functionality to have some quality of life. It's looking he will be deaf (signals are not being transmitted to the brain through the brain stems; his ear is actually ok), unable to learn to speak and might also be blind (doesn't follow and never really had eye contact; has cherry red spot). With trach and going home, it also presents problems with infection, taking care of him, sacrificing time with Aidan, marriage, etc. But at least, I could hope that, one day, a miracle will appear, or a cure will be found. However, I will see Logan suffer, not really able to live a decent life. Because of a trach, Logan will qualify to have a nurse to stay with us a certain number of hours a day. There are also facilities like nursing care homes for chronically ill children, if we decide it was too much for us to take care of him at home. Logan will also go through different therapies.
Option 2 - Extubation
She thinks Logan might not be able to survive for long without the ventilator, perhaps a few hours. They might be able to give him some medication to make him a little more comfortable. But that means I will lose him forever. I am giving up the little hope that I have, that he might be able to improve and get better. However, it breaks my heart to see him suffer. If he's completely sedated, he won't feel anything, but he won't be able to breathe on his own. If he's not sedated, he's uncomfortable with the tube in him.
Can you imagine how I feel after that meeting? I couldn't stop crying that whole day. When I went home to discuss with Hank, I was crying again. The days after this conversation, I could not get the picture of Logan dying in my arms out of my head. When I am not consciously thinking of something else, my mind will drift back to this. There is no light at the end of the tunnel. I came up with an Option 3.
Option 3 - Tracheostomy, G-tube, and have Logan show me what he wants. I cannot just let Logan go without giving him a chance to prove to us that he wants to fight. At the moment, he's on the ventilator, and he's sedated and immobile. I want him to have the trach, so that he doesn't have to be sedated, and will be able to somewhat be himself again. Then we can assess and see how he is, if his breathing has improved or not. I want to give him a fair chance before giving him up. I just can't let him go like that. If Logan is in severe pain, I might consider the unthinkable option. But he's not. He's comfortable, not in pain (at least not that we know of).
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March 30 - PICU Intensivist - Not as nightmarish conversation
I want to get this doctor's opinion on the options. I told her that I have talked to the Chief about the options and I want to know what she thinks. I actually blogged about my conversation with her. She generally agreed with the Chief, especially if it's a mitochondrial disease. Because it's the brain stem cells that are dead, and the nerves are not transmitting signals, these brain stem cells can't be regrown. If they are dead, they are dead, and this is what impaired his visual and auditory functions, and his breathing. His lungs are fine, but the brain is not getting the signal. Mitochondrial disease is also degenerative and it can get worse with time. She suggested to wait till all the blood test results come back before making the decision whether to get the tracheostomy. I agree with that. I am in no hurry to make any decision, as long as Logan is comfortable and not in any pain.
I told her about Option 3, and she agrees that might be a good option, if blood tests show that it's not Mitochondrial disease. She has a 7-month old son as well, so I know she could somewhat feel my pain. She has always been very supportive and patient in answering all of my questions.
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April 3 - Director - A More Hopeful conversation
I also asked the Director the same questions and he very patiently explained the options to me again. He also gave me a more realistic view and a timeline of how things could happen. We discussed more about getting a trach/g-tube and bringing Logan home. He explained that before any of this could happen, we should have a meeting with all doctors involved and whoever I felt should be present. The meeting should also include social workers or those that could help answer questions regarding insurance policies and with getting home care nurses to come to our home, . This would be a big meeting with many participants. He further explained that Logan will not be discharged two weeks after getting a trach (the Chief told me that's typically how long). From the time Logan gets a trach, to interviewing/hiring nurses, learning how to take care of Logan and the trach, all this can take 6-8 weeks.
He also said that another option is to keep Logan the way he is in the hospital for a few more weeks for observation. I told him I want him to be able to move around, be awake, instead of continue to be somewhat sedated.
After having a week to think about the options, and noticing some improvement with Logan (unless it's wishful thinking), I told him that I would want him to go with Option 1/3. I need to give Logan a fair chance, and I just can't imagine letting him go. He also mentioned that there are nursing care facilities for Logan, if needed. I told him that if I have made the decision to keep Logan alive, I want him to be home with his family, and not be abandoned in another facility. I will not say I am definitely not going to do that, but if it does happen, it would be the last resort.
He also said he would consult with the neurologist to see when is a good time to do another MRI. I totally want another MRI, as it might give us more information, good or bad. If the MRI shows another infarct in his brain, my decision might change. If the Mitochondrial disease blood test comes back positive, it might change my decision as well. Basically, if all remains the same with no other bad news, Option 1/3 is what I am going to do.
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