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.

Mother's Instincts - puffiness and transfer

Day 35 - Hospital Stay
Day 30 - Intubated

It just proves that mommy's instincts can sometimes tell us more than what doctors or lab tests can. Remember I've been saying Logan's cheeks look chubbier to me everyday? Now we know the answer. This is what happens during rounds.

Logan weighs 7.2kg today. He had 5 stools yesterday! His sodium level is low, at 128 (I think normal is 135). It either means he doesn't have enough sodium and needs supplements, or he has too much water in his system. It appears his body is holding onto water too much, because he's on the ventilator and can't get rid of excess water by breathing out. Water retention also happens if the patient has active neurological or pulmonary disease, which Logan has both. He has a neurological disorder, and he has pneumonia. The plan is to let his body get rid of the water by holding his feeds for a while. Every 4 hours, the nurse will check his sodium and sugar level. Once the sodium level gets back normal, then they will start feeds again at a slower rate (20ml/hr instead of 50 previously). They might also make his formula more concentrated, thus giving him enough calories but less water intake. Hopefully, by tomorrow his sodium level goes back up without compromising his sugar level. Last time when he got puffy, they turn down his IV, but since he has no extra IV fluid at the moment, the feeds is where they have to change. Aside from that, he's been doing fine. His blood gas shows normal range, and the Director agrees with me that his breathing pattern seems to be more stable. Thus, they will turn down his ventilator rate to 12 instead of 14 from yesterday (down from 16 a few days ago). Director will also talk to neurologist tomorrow regarding another MRI. It's been almost a month since his last MRI on 3/9/09. He is also at Day 4 of his antibiotics for pneumonia.

Logan is still very sleepy today. He opened his eyes earlier when I was giving him a massage and exercising his arms and legs. Now he's going back to sleep. Since his sedation medication hasn't changed, I wonder why he's still always sleeping. Maybe his body is recovering from the fever and pneumonia?

Remember I said before I considered getting Logan transferred to Lucile Packard when I found out about the stroke? After that, I put some more thoughts into the transfer. At this moment, I think we will keep him at Kaiser. Yes, Lucile Packard is a more reputable hospital than Kaiser. However, there are just other factors that I think are important. Logan has been in the care of Kaiser since birth. Kaiser knows him. The doctors and nurses at PICU in Santa Clara know him very well and know how he was, and how he is. If we transfer him to another hospital, new doctors and nurses will have to start to get to know him, and read up on his super long medical history. I think continuing care with the same people will bring stability to him. I know Kaiser doesn't get the greatest reputation sometimes, but I have been fortunate that both the Kaiser NICU in SF and PICU in Santa Clara have been great to us. All the doctors and nurses are fantastic. We have already built a relationship with these people. And if Logan gets admitted again in the future for whatever reason, they will immediately know what's going on with him. Besides, we will be moving down to Sunnyvale at the end of the year (cross our fingers), just 10 minutes away from the hospital. Transferring Logan to another hospital will make things more complicated for the future as well. Well, also our insurance can't be changed until next year. I believe the doctors have tried and done everything they can to make a diagnosis and to provide the best care. Mother's instinct told me, staying with Kaiser is what's best for him. A team of specialists and nurses who already know him, is more important than transferring him to another reputable hospital where no one knows him there. I hope I am right on this.

The Options and dreaded Conversations (long post)

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.

Logan's face always seems chubbier than the day before

*updated 10:00 p.m.
I was actually able to talk to the Director right before I left. The conversation was long and I'll write about the details in another post. Most importantly, the Lysosomal Storage Disease Genetic blood test came back NEGATIVE. Now we're only waiting for a few more tests for Mitochondrial disease. Logan also did not have a bacteria infection, as the culture did not show any growth. No more extra antibiotics or IV line for now.


Day 32 - Hospital Stay
Day 27 - Intubated

Just arrived at the hospital since I had a dentist appointment this morning. Will have many more appointments the next couple of weeks. I want to get them all done before Logan comes home. Because of stress, my teeth have been very sensitive and I was recommended to use a night guard. Obviously, I've been clenching my teeth really hard, even when it's not at night.

1:30 p.m. - Talked to nurse. Everything is about the same. I didn't see any new IV or central line. I guess they really couldn't get that in yesterday. Logan's cheeks for some reason, always seem chubbier to me every day. Maybe it's just me. His Ativan level has not changed, but he seems a lot sleepier today than yesterday. Yesterday, he kept on opening his eyes; today, he's been sleeping. He might move a little bit, but hasn't opened his eyes for me yet, even after changing his diaper. I am waiting for the Director to come in to talk to me. Aside from getting updates from him, I also want to ask him about the options presented to me. I want to get his 3rd opinion on what he thinks. He's been following Logan's case since he got here, even his last hospitalization, so he knows Logan pretty well.

4:00 p.m. - Mm... the Director still hasn't come in and talked to me. He seems pretty busy and I didn't want to bother him. I keep on hearing alarm sounding off in the other rooms, and there are a few new names on the board. Since Logan is stable, maybe I'll just ask him tomorrow. Weekends are usually quieter. I see him on the phone and in front of the computer a lot. Probably trying to get all the specialists before the weekend comes. Logan is still very sleepy. He almost opened his eyes once. The nurse measured his temperature earlier and it was a little high. He said he would measure it again later. If he still has a temperature, then he might give Logan some Tylenol. I hope he's not getting sick again. Or maybe he is, that's why he's so sleepy today, trying to fight off whatever it is. As long as he's stable, I am happy.

4:20 p.m.- Good, temperature went down a little to 98.7. Phew!

On the other hand, I am trying to look for Easter Egg Hunts for Aidan. We went to San Mateo Central Park last year for his first ever egg hunt. He seemed to have a lot of fun. This year he's a little older, and he could probably run and wrestle with the other kids, instead of me carrying him around. I still remember how "crazy" some of the parents were. I also need to buy the exact same chocolate bunny this year. I've been doing that the last three years, and took picture of Aidan next to it. It's interesting to see how he grows next to that chocolate bunny. I was also thinking, if they are not painting eggs at his preschool, maybe, just maybe, I will attempt to do that at home with Aidan. I hope he's older now and will be able to appreciate that. I just wish I don't create a big mess.

He is not as sedated and he opens his eyes periodically!

Day 31 - Hospital Stay
Day 26 - Intubated

9:40 a.m. - Came in and they were ready to do his routine Chest X-ray. Logan opened his eyes a little and I was able to touch and talk to him again. I am not sure if he can hear me or see me, but I am sure he can feel my touch. He looks comfortable. I didn't see any IV or central line on him. The nurse said they tried for a long time yesterday, but couldn't find the right spot for it.

10:00 a.m. - Child Life Specialist came in to show me the foot prints that we did for Logan on the 30th. They were so cute! It's a white, ceramic-like plaque. We did that on Monday by placing his feet in some kind of mixture, then waited till it solidified a little to get the shape of his feet. Of course, he was struggling a little when we did it. We couldn't get all the tiny details of his toes and lines, but I am pleased with the result.

10:20 a.m. - Doctors came in to do rounds. Logan weighs 7kg. He is on a small dose of Ativan (sedation medication) every 8 hours. Now they have decided to just give it to him as needed, as he seems comfortable enough. They have discontinued the central line, as mentioned earlier. He is taking injection antibiotics for his pneumonia. The doctor will double-check to see if he can get it through his ng tube or orally. They are putting a hold on giving him a central line at the moment. Because his blood culture showed a delayed growth (came after 3 days) instead of 48 hours, they are re-doing the blood culture to make sure he really has a bacterial infection, instead of a contamination of the culture. If he doesn't have a bacterial infection, then they don't want to risk giving him a central line, which is more prone to other infection. Unfortunately, if he does have the bacterial infection, the antibiotics has to be given through the IV or central line, so they will have to poke him again. The nurses also reported during suction, he had some thick white secretions. However, his lungs sound clearer today and he looks comfortable. I've previously spoken to this doctor on Monday regarding treatment for Mitochondrial disease and Edison Pharmaceutical (thanks to my cousin Peggy for giving me that info). She has spoken with the Geneticist regarding giving Logan co-enzyme q10 for treating Mitochondrial disease. Geneticist said it works for some adults, but doesn't work for others. But because it's just over-the-counter type supplement, it doesn't hurt giving it to Logan. Geneticist thinks it won't help, but why not try it when it doesn't hurt. I'm glad this doctor has listened and thought of what we talked about on Monday, and consulted with the Geneticist about it. Geneticist also thinks his low-normal enzyme result it's not a big concern. He didn't think that was the cause of what's going on, but would like to have the test repeated in 4 weeks.

10:30 a.m. - Doctor stayed for a little while to see if I have any other questions. I told her I am not sure if we should give Logan the trach right now, so that he could be more comfortable, and to decrease the risk of other infection, as my cousin Peggy mentioned. Doctor said because Logan has a suspected bacterial infection and a small case of pneumonia, they would not perform surgery on him at the moment. This give us a few more days to think about what we really want to do. I told her, as long as Logan is comfortable, I am not in a hurry to make any decision.

12:00 p.m. - I've been standing next to Logan, so that when he opens his eyes, he knows that mommy is right there. He's been more awake but that also means he moves a little and gags a little. He just let out a yawn, so cute. I tried to talk to him and make him see me, but I don't think he can really see. He doesn't follow my finger at all. He might hear some noise, but probably not enough to learn speech in the future. I am heading out to lunch, and will drive over to Parents Helping Parents in San Jose to take a look.

2:30 p.m. - Nurses are all over him to try to get an IV on his left arm. Ouchie again. He hasn't had any Ativan in a while, too. I hope they are successful. Trying not to stand by the bedside so that the nurses won't feel pressured. I came back and thought Logan's face was a little puffier than 2 hours ago. But maybe it's me imagining things. The nurse didn't seem to see the difference. Well, I had a very nice lunch and went over to Parents Helping Parents. Met with a Family Resource Counselor, told her Logan's story. She will try to research to see if she can find any parents that have gone through similar circumstances, and then she'll give me a call. She'll also share the info with the other Early Intervention Counselor.

3:00 p.m. - Couldn't put the IV in. The next shift nurses will have to try again. It's probably because he's a little dehydrated, since his feeds didn't start till 12 p.m. and he has nothing to eat from 6 a.m. - 12 p.m. He had a little dose of Ativan earlier, but I think the sedation has already worn off. He opened his eyes just now and was moving around.

I was looking at his ventilator monitor earlier before lunch. Now that he's not too sedated, his breathing pattern looked better, at least to me. He is taking in more breaths on his own and they are pretty good-sized ones as well. This gives me hope. I am hopeful that if he is trached, not sedated, he can breathe much better. I hope I a right.

4:30 p.m. - RT is here to give him his breathing treatment. He had that last time when he was hospitalized due to a cold. They have him inhale vapor saline solution to loosen up the mucous, punch (massage) him with a rubber thing on the chest, and then do a deep suction. I hope he's feeling fine since he has a tube in him this time around. Almost time for me to pack up and go. Today is a good day. The only concerning detail I noticed is Logan's minor jerky movements of his arms and legs. Not sure what that means, or maybe I am just over-analyzing everything.