The title said it all. This post is not going to be about happy news. It took me a while to decide whether I should write something or not. I figured all of you might want to know what happened and if I don't post for a few days, you will all start to panic.
Logan's MRI result came back yesterday afternoon. The doctor came to tell me that there was some abnormality in his Mid-brain, which seems like a stroke due to a lack of oxygen. They suspect Logan might have this disease caused Mitochondrial Disease, which is progressive and incurable, and mainly inherited from my genes when he's inside of me. Nothing is confirmed yet since we need more bloodwork to be done, but all signs point to that direction. According to what I was told by the doctor and the neurologist, mitochondria produce energy and is all over the body. If they are not working and producing energy, when the body stresses, it will shut down. It's unpredictable and you can't tell which organ it will hit: heart, brain, liver, or kidney. The lifespan of infants having this disease is very short. The neurologist told me a case of a girl who passed when she's 3. There might be treatment, depending on what type of Mitochondrial disease he has. We need to consult with Genetics to find out what type of blood tests need to be done. They will figure out what type of blood tests needed to be done and then just poke him once to get all the blood needed. We talked about doing a muscle biopsy, but because the time to get that result versus the time for the blood tests result to come back is just as long (at least two weeks), we've decided to forgo that, and spare him the pain of taking a piece of tissue from him. Neurologist say back in the days, a muscle biopsy was useful but within the last year or so, a blood test is more effective.
As of now, we are still hoping that it's not Mitochondrial Disease. The doctors will continue to monitor his breathing and try to slowly wean him off the ventilator. He's been doing fine with the rate of 12 breaths per minute, down from 24 yesterday. They have changed his sedation medication to something not as strong because if he's too sedated, they couldn't get a good assessment of his breathing. His face also looked puffy to me this morning. The doctor said they have given him medication for that and probably due to too much IV fluid. They are weaning him off IV as well, and he's been getting 75 ml of formula every 3 hours through the feeding tube.
I also mentioned to the doctors that if it's Mitochondrial Disease, I would like to transfer him to Lucile Packard even though they are all great, I just need to know my son is getting the best. Of course, they are not happy with the decision. Such a decision has to be decided by the Chief. So we'll see.
I am trying very hard not to think of the negative until it's definitive. I don't want to think about losing him in a couple of years, or him living a torturous life of tubes everywhere. How I wish it is just Down Syndrome, or Cerebral Palsy or Epilepsy, as this will still give him a chance to live a pretty good life. But not if he can't breathe and needs a ventilator + Trach + g-tube for the rest of his short life, and worry about every virus and infection.
I know you all are feeling just as bad and want to offer your support. We greatly appreciate that and we know we have very caring and great friends and relatives. However, at this point, at least for me, I wish to ONLY be communicated through e-mails or internet. I don't think I can deal with talking to anyone at the moment. I don't think I can stop my tears. I have to still put up a happy face for Aidan.
Please just pray that it's not that horrible disease.
1 comment:
The potential diagnosis is hard to take. Meanwhile, focus on the progress Logan has made. He is taking 2.5 oz of formula. He is intaking more food and calories. His respirator setting is quite a bit lower than before. Logan is making every effort to show you that he is a fighter. Please focus on his progress. We love you!
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