He opened his eyes today again!

*I forgot to mention that I would like to thank Kerry and Marg for bringing over some delicious soups yesterday. Thanks for coming by, sharing laughs and girly chats with me!

Day 36 - Hospital Stay
Day 31 - Intubated

Came in just in time to do rounds. The nurses and the student nurse were trying to change Logan's ng tube. Of course he didn't like it. Who likes to have a tube through one of your nostrils and then down into the stomach. I hated doing that for him when he was first discharged from the NICU at 1 month. It's not as difficult as it seems, but still sucks doing that for your baby.

Rounds:
Logan lost a little weight, weighing 7.1 kg as he hasn't had any feeds since yesterday. His sodium level is at 132, still not quite back to the 135 range. His level wasn't really slowly building up; it went up a little, and down a little, and settled at 132 at his last blood drawn. In order to make sure he is having his nutrition, they are starting his feeds again at a rate of 30 ml/hour, down from 50. A consult will be made to Nutrition to decide if we should continue with this rate, or to give him a more concentrated formula. His sodium and glucose level will be checked every 6 hours (poke one less time than yesterday). Poor thing, his heels are scarred again. This is the time when I wish he has his central line, so that they can draw blood without poking him with needles. In addition, he had 7 stools yesterday! That's a lot of poopy for a little guy with nothing to eat. The resident doctor was not sure of the consistency. But I bet this is due to his antibiotics (day 5 of 7). Logan also had a low-grade temperature of 100.1 last night, but after removing some of his blankets, his temperature was back to normal. Phew! The ventilator rate is further decreased to 10 breaths/min, and the volume of the breath is decreased to 13ml instead of 15. Oxygen concentration is also down to 30% instead of 40%. The blood gas showed he was hyperventilating a little and the volume of his breaths was a little high, at the 70s instead of between 35-50ml. Let's see how he does with the new setting. These changes are all good news. Logan is showing us that he's fighting and has not given up yet! Director said he will talk to Neurologist today about the MRI. If he's getting it, it might be towards the end of the week.

I've noticed that they have taken his Hugs tag off. The Hugs tag is usually attached to all kids, I think under the age of 12, so that they can't run off, or no one could steal any babies. If the tag is being tampered with, or not taken off while leaving the PICU, the alarm will sound off . I guess they figured he's on the ventilator, no one can really sneak him out. It's more comfy with one less tag attached to him.

I've also noticed they attached a tag to his bed with a medication name. For some reason, I keep on forgetting to ask what that is until today. They tried to give him Theophylline before to open up this bronchial tubes to help with breathing. Apparently, he's allergic to it. His heart rate went up to 200, and he had rashes all over his body. After they stopped it, he's back to normal. I wonder why they didn't tell me that. It's pretty important to know that he's allergic to a medication, even though it's not something that's common, but still. They must have given that to him the days Aidan or I was sick and I was unable to come. Now whenever someone asks if he's allergic to any medication, I will have to say yes.

Logan is a lot more awake today. He's like when he was 3-5 days ago. I didn't know excess water retention can make him sleepy (thanks cousin Peggy). I guess it's showing that he is losing that excess water. Yay!

11:20 p.m. - Neurologist just came in. I gave him a brief update on how Logan is doing. He agreed that it might be a good idea to do another MRI. I also asked him to explain to me a little more about Logan's infarct. He drew on the white board and explained it to me. The black parts on both sides of the brain are where the stroke is. I didn't know it was on both sides and more than one part. They are located in the Midbrain. When he first met Logan, he has asked me about the movement of his arms. At first, he questioned if it's the side effect of Reglan. Now we know it's because of the stroke. He said because of the location, they aren't really close to the 3 big blood vessels, but off to the side where the small blood vessels are. That's why they suspected it's Mitochondrial disease, esp. when it happened on both sides of the brain. He said the gray matter along the side of the brain looks fine, and the little of the brain stem that they can see. I asked if we can do an MRI to see the brain stem. He said it's difficult because of it's location and the size. I also asked about the hearing test/loss. I showed him the hearing test result that I received from the Audiologist. He showed me the nerve in the brain stem. He said it might be possible to surgically do something about it, but the nerve is so small and it's so close to other nerves that control the face. The benefit of doing something might not be worth it. I told him I think Logan could hear some noise, but probably not enough. I then asked about his eye sight. I was told he reacted to light but not sure if he can actually see. He said there's the actual seeing of something, and the interpretation of what you see. He has seen Logan before he was sedated. He said it's hard to say because Logan has been sick and in the hospital for so long. He might not have the chance to develop normally.

12:50 p.m. - Finally got the name of the enzyme that showed low-normal in Logan's bloodwork last time. It's Carnitine. He's getting supplement for that, on top of his antibiotics, co-enzyme q10 and Ativan.

2:25 p.m. -Director just came in and told me we might have some results back from the lab. He's trying to get more information and to set-up a meeting with the neurologist and geneticist for today. It seems like there is an abnomality in the mitochondria and the lab recommends some more tests to get a definitive result. Director wants to consult with neurologist and geneticist about this. If possible, we might have a meeting to talk about it later today. I am not sure how I feel about this. Bad thing, it is the deadly Mitochondrial disease. Good thing, we might have a diagnosis. Depending on the conversation and how I feel, I will blog about it tomorrow.

One of the worst 24 hours of my life

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.

Something is definitely wrong with Logan.. but what is it?

At first, I was planning to do a happy blog on Aidan's preschool days. Before I could do it, I now have to write about Logan, who is hospitalized at Santa Clara Kaiser again.

Yesterday at around noon after I finished feeding and burping him, I had him in my arms while I was watching tv. Then suddenly, I felt his whole body tensed up. When I looked down at him, his face started to turn dusty and lips were turning pale. I immediately sat him up and pat him on the back. He was still tensed up in a boxer position with his knees up as well. I then put him on my shoulder and pat him some more. Then I felt his body loosened up and he let out a breath. Of course, this scared the heck out of me. Unfortunately, episodes like these happened for the rest of the afternoon. After two episodes in less than 30 mins, I called Hank and called Kaiser. While I was on the line with the operator, Logan did that again. The advice nurse checked in with the doctor and suggested us to go to the ER. Since Logan was fine at that time I was talking to her, they did not recommend calling 911, but to find someone to be with him while I drove. However, I was so scared that he did that again while I was driving and there's really no one who could come along with me. I ended up calling 911 and the operator was with me the whole time until the Fire Department arrived. I recalled my voice was shaky when I talked to her and she had to repeat a few questions several times.

The fire department arrived within minutes. Thank you! They hooked him up to the monitors, asked me some questions and took Logan to the ER in SSF. I dressed, called Hank, and immediately headed to the ER. When I got there, the nurses were already putting probes on him and taking his temp. I saw him turning dusty again while they were doing it. A series of blood tests were done, CT scan, chest X-ray and they even had to put a catheter in his you-know-where to draw urine out (that was the first time he had it done and was painful to watch). He was probably at the ER from 1-5 p.m. He turned dusty almost throughout his ER stay. The worst period was when he had the episodes every 4 minutes. It seemed like he opened his eyes, gazed into space and then it happened. We wondered if he was having seizures. At around 4:15 p.m., Hank and I went out for the snack while waiting for the Santa Clara EMT crew to come up. When we got back, the nurse was holding Logan and his episodes miraculous stopped. Even after he was transferred to Santa Clara Kaiser, those episodes disappeared. While Logan was being transported to Santa Clara, Hank and I went to pick up Aidan from preschool and then we all went down to the hospital to see Logan.

At first I was wondering if I was imagining all this. I could tell from his face that it was coming even before the monitor beeped. I was able to stimulate him before he turned all purple on me like his last hospitalization. But no, I wasn't imagining them. They all saw it. I remember even asking Hank if I was imagining and if he saw Logan changing color.

But since around 4:30 p.m. and up until we left the Santa Clara Kaiser at 8 p.m., he didn't have any episode anymore. They were doing some more blood work, and another chest x-ray. I have requested him to get an EEG done on his head (he was going to get one anyway in the next couple weeks), to see if there's any abnormality going on. For some reason, it seems like the brain just tells him not to breathe. Very likely, they will find nothing, and Logan will be discharged and then something bad is going to happen again and we will repeat the whole vicious cycle.

Something is wrong. But after all this time, we still don't know why. The ironic thing was, we just went to see Logan's neurologist yesterday and everything was peachy then! I know the brain is a very complicated body part that we don't know everything about it. But, I want to know what's wrong with my baby. It's been way too long. We might not be as lucky as we have been in the future.