Aidan is the healthiest of the bunch

Day 29 - Hospital Stay
Day 24 - Intubated

Hank and I are both pretty sick. Hank still has to work, unfortunately, and he's primary on call this week as well. As for me, I feel pretty crappy that I didn't go to the hospital today to see Logan. I am so worried that we have already gotten him sick twice while he's in the hospital. I did speak with the doctor and the nurse.

Logan is still about the same. He had one incident last night that he had to be bagged. It usually happened when they tried to suction his tube and change his diapers. He gets mad. When I was there, I tried to lower his bed so that it's not elevated and the tube won't be pressing against him while they change his diapers. I don't think the nurses were doing that, that's why he gagged every time. I really need to pass that along to the nurses, whether they will do it or not, I don't know. I asked if he has desaturated during the day when he wasn't mad, and it seems like he didn't have any unknown desaturation today. The doctor said the amino acid result came back normal. One other test, I forgot the name of it, is to test the enzyme of the mitochondria, and that came back in the low-normal range. The doctor said she would have to check in with the Geneticist to see if it's a concern. She said that without that enzyme, it could cause muscle and heart failure.

I also talked to this doctor yesterday to get her opinion. 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. She suggested me 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.

Depending on how I feel, I might not be able to go to the hospital tomorrow. I am still feeling pretty crappy. Every time Aidan gets sick, the whole family gets sick. I've already religiously washed my hands, and taking Centrum everyday, still couldn't escape that. What if Logan comes home and he gets whatever Aidan is getting. His little body cannot handle all that germs.

Aidan is doing better in preschool. He had nightmares the other night, kept on saying a kid hit him in the bathroom. He mentioned that before, but I didn't realize it would cause him nightmare. This is also the kid that he pushed at school before (among other kids). I told the teacher about it and she said she would keep an eye on them. She said it's possible that this kid might have caused some trouble, but definitely not too many times because she would have caught it. I've seen this kid in school, and he's the active, naughty type as well. So I am pretty sure something happened between Aidan and him. Kids at this age are just impatient, especially boys. This teacher, which I really like, is also getting transferred to another classroom due to staff shortages. That really sucks. She's so nice and always gives us updates on how Aidan is doing. The Head teacher in his class is on vacation for two weeks. That means Aidan will have two brand new teachers in the class for a while. I believe he will adjust, I just hope the teachers will be as nice and as tolerant as this other teacher.

I forgot to mention. Thank you Auntie Stacy for visiting Logan on Sunday. It's nice to have someone to talk to who is not a nurse or a doctor, and to talk about something non-medical. It's nice to gossip sometimes. Thanks!

Logan seems to be slowly deteriorating

Day 28 - Hospital Stay
Day 23 - Intubated

I know I haven't blogged in the last few days. The conversations that I had with the Chief had been tough and we needed time to think. We also needed some time to talk to the other doctors, get more facts, before we can make any decision. It's just not easy coming to the hospital everyday to see Logan lying there, semi-conscious, and not being able to move.

All of us at home are sick. Aidan, Hank and myself. Logan has been having an on-and-off low grade fever the last few days. I hope I didn't get him sick by coming to the hospital. I have to wear a mask when I am here, just to be save.

Logan is basically here waiting for the blood tests results. In the meantime, we're thinking of options. He hasn't been as awake the last few days, and his desaturations occur more often, even when he's not even moving or coughing. I am here for less than an hour, and he already desats twice. He's on the ventilator still, at a rate of 16, yet he still desats to the high 80s out of nowhere. When Hank was here on Saturday, he said Logan was coughing and gagging, and actually desaturated down to 4!!! I think he's tired. He's tired to breathe on his own.

I am still waiting for rounds, and then I am going to request a conversation with the doctor, to get her opinion of the options being presented to me by the Chief. I know the Chief said she has consulted with the other doctors before approaching me, but I still want to be able to talk to each of them personally and get their thoughts. I am hoping one of them can give me some hope.

The much dreaded conversation

Day 25- Hospital Stay
Day 20 - Intubated

I had THE conversation with the Chief of Pediatrics today regarding options for Logan in the future. It's not yet time to make any, but she wants us to start thinking.

She laid out two options for me, and was very frank and realistic.

To us, these are not options. We could not choose from either one of them.

At the moment, Hank and I would like some time to think. I would prefer not to blog about the details of the conversation just yet.

I know you all are worried about Logan. When the time is right, I will write some more. Please continue to keep Logan in your prayers.

Aidan's all better and Logan is doing OK

Day 24 - Hospital Stay
Day 19 - Intubated

I spent the day with Aidan today. It's actually kind of nice to do that, since I don't get to do that as much these days. His fever is finally gone. He and I both slept from 8 p.m. to 7:30 a.m. It's been a while since he has slept this much. He was so tired last night after dinner, I immediately got him in bed after washing up. I took him to the park today. He hasn't been to Orange Park in a long time. We used to go there almost every weekend. He got to run around, play the swing and slide. I only let him run around for about 30 mins, because he's still recovering from his illness. We then went to lunch and did some shopping at Target. Came home and he went to nap. He's still napping at the moment (almost 2 hours).

The Director of PICU called me this morning to update me on Logan. It's so nice of him to take the initiative to call me. He told me the new drug didn't work to stimulate Logan's brain to breathe. They decreased the ventilator rate, but his blood gas showed that the CO2 level was on high, as if he's not exhaling enough. It's looking more and more likely that he will need a trach. He also told me that 2 of the blood tests for Mitochondrial disease came back, and they were normal. There were about 4 or 6 more, plus the new set of test for Lysosomal Storage Disease. We're still waiting on those. He has also decided to re-send a few other tests that Logan has done when he was in the NICU. These are all tests for genetic diseases, testing the enzymes, or the by products. Those new ones are sent to a lab at Kaiser, so the results should come back faster than the other specialized ones. I also asked him again about Logan's 4-month immunizations. We both think that it's best to put a hold on that. It's less likely for him to get infected when he's in the hospital, and we want to minimize variables before we have a diagnosis. He said he would check with the neurologist, but for now, we should wait. I received a call from a nurse from Daly City yesterday regarding the Synagis shot. The nurse said the season for RSV is almost over, and Logan doesn't need another shot. I asked the Director about it and he said he would check with the Kaiser in Santa Clara regarding whether they are still giving the shots at that facility. I also asked if he should get another MRI since things might change. The Director thinks if all the tests came back normal, then doing another MRI and follow-up appointments with specialists would be the way to go, so as to make sure nothing else comes up. But, if the blood tests show something, then it's not necessary to get a MRI now. We could wait for a little long as the doctors might be able to predict what other things would happen.

So we'll continue to wait. As mentioned before, I really don't know if I want to know what's going on. It's such a catch-22. To know the blood test results, it's like waiting for the death sentence in a way. Please continue praying for little Logan. I'll be back at the hospital tomorrow.

Aidan still has a fever... but he's active as always

Day 23 - Hospital Stay
Day 18 - Intubated

Aidan stayed home today and didn't go to school. So, I was unable to head down south to be with Logan. I did check in with the doctor and the nurse to see how he's doing. They started the first rounds of the new drug yesterday and was able to decrease the ventilator rate from 20 to 12. That's the lowest they could go from now. They are going to increase the dosage and see how Logan reacts to that. Hopefully, it will be able to stimulate his central nervous system to take in bigger and more frequent breaths. The Urologist said his VCUG result was fine. He did recommend doing another X-ray from the bottom up again. The Director has placed a call to the Genetics counselor to see when the blood test results will be back. For now, everything is stable. I don't think I will be able to go down to see Logan again tomorrow, but I will surely call to check-in.

Aidan, on the other hand, still has a low-grade fever. I took him to the pediatrician today since he's been coughing and has a runny nose for two weeks. It seems like he's been getting back-to-back colds. Doctor said his lungs sound clear and it's probably viral. Nothing much to do except giving him some Tylenol or Motrin to keep the fever down. He said if the fever continues to last for 3 days at over 103 degrees, then we need to bring him back. Or, if he's coughing lasts for 3 weeks and more without getting any better, or his coughing happens mainly at night, we should take him in for another check-up.

Aidan is active as always. Once he slowed down, I could see that he's tired. Unfortunately, he only napped for an hour today and he woke up with a higher fever. I gave him some more Tylenol. His head still felt a little warm. I think I might try some Motrin later and see if it works better. Will have to keep him home again tomorrow.

March for Babies - Thank you!!!

Thank you very much for everyone's donation to March for Babies. I have WAAAYY passed my goal!! Yay!!! My original goal was set at $500. As of now, I have already received $1028!!! Just by looking at my banner, it only said about $615 because that's the donation and pledges made to my personal page. But there are also donations made through my Team Logan The Lobster page. Adding donations from both pages, I have doubled what I initially set to achieve.

THANK YOU VERY VERY MUCH FOR ALL OF YOUR SUPPORT!!!

Now, anyone actually wants to walk with me on April 25th at 9 a.m. in San Francisco???

April 25, 2009

Bay & Laguna Streets

San Francisco, CA 94123
Walk Distance: 6.25 miles
Registration Time: 8:00AM
Start Time: 9:00 AM

Logan's colon seems to be doing fine! Whew!!

Day 22 - Hospital Stay
Day 17 - Intubated

Grandma came to the hospital and visited Logan today. She attended rounds when the doctors came in. When we first arrived, the nurse told me that Logan just got back from his VCUG. He was a little mad when they put the catheter in him, but overall he did great. The nurses gave him a dose of Versed to calm him down, but he was still wide awake when transported down to radiology.

Everything seems to be fine but we're waiting for the official read from the radiologist. If all goes well, we can stop his antibiotics. That's good, one less medication in his tiny body. During rounds, the Resident reported that last night was good and there's no respiratory distress. Since decreasing his ventilator rate yesterday, Logan's blood gas showed that O2 was a little low this morning. So, they increased the rate back to 20 instead of 16. However, I did notice the O2 saturation from the ventilator has decreased from 30% to 25%. From the respiratory chart, I noticed they lowered it all the way down to 21% last night (room air) but after a few hours, it was bumped back up to 25%. Probably Logan didn't sat very well. They started feeding him again yesterday and he was tolerating it fine. They said because he has no problem with feeding, his colon is functioning normally. I had to ask the nurses again later why we're concerned about his colon, as he was tolerating feeds before anyway. Apparently, his tummy was a little bigger over the weekend but yesterday and today, it was smaller and soft. The nurses explained that because he used to have continued feed of Versed and so much Chloral Hydrate, it might have affected the colon and slowed things down a little. But it seems like the colon is not a concern. Thank goodness! I was SO worried it's the Mitochondrial disease that is attacking his colon now. Thank GOD for listening to our prayers! So, as mentioned yesterday, they are going to try this new drug, Doxapram, on him to see if it will stimulate his brain to breathe better. They will first give it to him through his IV for a few hours. They will wait for a few hours and then decrease the rate of his ventilator from 20 to 16, and do a blood gas. If all goes well, they will further decrease his rate and have him go on cpap and do some lung exercise. Let's hope this medication works!!! Please make it work!!

We're still waiting for blood tests results. Logan is nice and calm now. He was moving around earlier this morning and had to have this arm out. At one point, I have to stand right next to him to make sure he's not pulling anything off. He calmed down and went to sleep while I was holding his hand with my right hand, and have my laptop on his bed and surfing with my left hand. :) It's nice to know that he finds comfort in holding mommy's hand.

On the other hand, I just got a phone call from Aidan's preschool. He has a fever! I'm waiting for Hank to come pick me up from the hospital, so that we can pick him up at school. Unfortunately, I didn't drive today, so we have to all leave early. I hope he's ok. His cheeks looked a little rosy last night but his forehead didn't feel warm. It's probably the flu. He's been having a runny nose and coughing for the last 2 weeks, ever since he started preschool. New germs from new school.

I got to hold Logan! It's been 16 days!

Logan awake and moving around; thus making the ventilator beeped.

Day 21 - Hospital Stay
Day 16 - Intubated

9:30 a.m. - Arrived at the hospital. Nurse said nothing much has changed since yesterday. Logan was sleeping soundly. Waiting for rounds and will give him a sponge bath afterwards. Learned from the nurse that he's getting Ativan every 8 hours and Versed (aka Midozolam) in between. I remember him getting Versed before when he was fully sedated. The nurse said Versed doesn't last very long. They are still suctioning stomach juices out through the ng tube periodically.

10:30 a.m. - Rounds here. Director of PICU is back. Logan weighs 6.6 Kg now, down a little more. They did an X-ray on his stomach, waiting for PICU Director to read it to see if the colon is still dilated. Resident and Director both examined his tummy and it was soft, and they heard some "hypoactive bowel sound". I assumed it meant stool is passing down. Logan doesn't have diarrhea anymore, but has a little stool. I reiterated what I was told over the weekend, since the Resident and the Director were not here. They are also giving him Raniditine (acid reflux meds he took before). I asked why he's getting that since he doesn't have acid reflux. Resident said it's to protect his GI system while he's not getting feeds. Director asked if Logan had his VCUG and we responded no, because we're told that he's intubated and should wait. Director said there shouldn't be any problem and will do another e-consult to see if Logan can get it done. Blood gas showed that Logan is hyperventilating. Usually, he's hypoventilating, so they turned down the ventilator setting a little bit, from rate of 20 to 18. Director asked aside from caffeine, if any other drugs have been used to stimulate his breathing. They might want to try Doxapram, which is a central respiratory stimulant but an old drug that they used to use. Pharmacy is looking into that. Now I am waiting for them to tell me what's going on with his colon. Hopefully, it's back to normal, if not it can be a sign of Mitochondrial disease. We're also still waiting results of the blood tests for Mitochondrial Disease and Lysosomal Storage Disease.


11:10 a.m. - Nurse and Respiratory Therapist are re-taping this tube. It's getting loose, especially, Logan is moving around.

1) During re-taping, 2) After re-taping

12:00 p.m. - Doctor said his colon was better, not normal, but better. As long as it's not getting worse, it's good. Now he can eat again. The nurse just changed his ng tube to be a better feeding tube than the previous one that they use to suck out the juice from his tummy. Logan is still awake and moving around. I let his arm out for a while and stand right next to him to prevent him from grabbing anything. But his temperature is a little low, so I have to restrain his arm again and put it back inside the blankie, to keep him warm.

1:45 p.m. - I JUST HELD LOGAN!!! It's been 16 days since I last held him. The nurse asked the Director if it's ok if I hold him for a little while, and the Director was fine with it. We coordinated the time for him to have his sedation medication so that he's calm and not wiggle around. It was only for a couple minutes, and the nurses got to change the sheets of his bed. They asked if I wanted to hold him longer, but I declined. A few minutes would be sufficient. I was a little nervous to hold him longer in case something happened. It's all good. I am happy and satisfied. :) Now he's back to sleep.

Things might have gotten worse?

Day 20 - Hospital Stay
Day 15 - Intubated

Hank and I came to the hospital to visit Logan this afternoon. Aidan is hanging out at grandma's place for the day, probably walking up and down the stairs.

Update on Logan: Doctor told us that he's not doing his lung exercises anymore. He is still desatting and it's just better for him to rest and not stress his little body out. He desats even when he's not coughing or gagging. His caffeine level was good but it didn't seem to be helping with this respiration. So, they stopped it. On the other hand, the doctor noticed that his tummy was a little big yesterday. They did an x-ray on his tummy and noticed his colon a little dilated. A surgeon was called to check on it, no surgery is needed at this point. Because of this, they have stopped his feeding and he's put back on IV. They had to empty out the contents in his stomach and took his stool for culture, to make sure there's no infection. They did another x-ray today and his colon and tummy looked smaller. The doctor said it might be due to the sedation drugs that he's on, since he's been on it for so long. They changed his drug from Chloral Hydrate to Valium and not to Ativan. All this might also be one of the underlying factors of what's really going on with him, which at this point, we're unsure what that is.

It's very likely the blood test results will come back some time this week. We might, or might not know what's going on. Either way, we will have to sit down with all the specialists to figure out a plan and options. This is not a meeting that we're looking forward to.

Even with the ventilator, Logan still desats while we're here at the hospital. He wasn't coughing or gagging, his respiratory rate just went up really high and the monitor showed that his oxygen level went down. He's taking little breaths instead of big breaths again. It happened when he's awake as well. I was hoping his breathing would be fine when he's awake, and might just need the ventilator when he's sleeping. It didn't seem like it anymore. His condition seemed to have worsened overall. I am really hoping it's not a Mitochondrial disease, which is hitting other parts of the body now. Please, we need prayers.

Growing up too fast vs. not fast enough

Day 19 - Hospital Stay
Day 14 - Intubated

Hank went to the hospital today instead of me. I got to spend time with Aidan by taking him The Little Gym, lunch, and then a haircut. According to Hank, Logan was doing fine. Hank said Logan desat-ed twice when he was there, due to his coughing/gagging. After slowly decreasing the dosage of Chloral Hydrate and giving him some Valium, the diarrhea problem was solved.

As for Aidan and I, Aidan had a really good "sweet" day. We first went to The Little Gym for his class and he got to play the pirate. I think he followed directions a little better this week, by not running around the gym as much as before, but actually stuck to his group. At the end of the class, the children did at treasure hunt and he got some gummy bears as a treat. After class, we went out for lunch at a Filipino restaurant. We've actually never been to this restaurant before, but I was walking by and saw it's pretty full and it's close to the haircut place, so why not give it a try. I always like to try out new restaurants. We ordered then Pansit (noodles), and Aidan liked it. It's a little salty for my taste, but at least it's not too dry. At the end of the meal, one of the owners/staff asked Aidan if he liked ice-cream. Of course he said yes. Aidan chose purple out of the selection and he got a free taro ice-cream. It was delicious! It had tiny little bits of taro. After lunch, we walked over to the haircut place. It's packed with little kids but the wait was short. This is the third time Aidan's been here and finally, he enjoyed his hair cut. The first time, he cried like a baby. Second time, he made weird, frowing faces, but at least he sat still. This time was smooth and fun. Of course, he couldn't leave the place without his choo choo train ride and the lollipop at the end. He was so sugar-high by the end of the afternoon that it took forever, and many tears, for him to settle down and take a little nap. Nonetheless, it was a good day.

* September 08 (before cut)

*December 08 (after cut)

*March 09 (after cut)

The lady at the haircut place gel-ed Aidan's hair, and he looked like a little boy. Every time he gets a haircut, he looks a little older. This time with his hair all gel-ed up, he looks even older. Aidan is growing up too fast. He's not my happy, sociable, cute baby anymore. He's actually become stubborn and emotional, but still loves to hug and kiss mommy. On the other hand, Logan seems to not grow up fast enough. I want Logan to grow up like Aidan, likes to hug and kiss, but we are lacking practice in that area at the moment. Don't worry, we'll make up big time later.

Big breaths.. Big breaths... Gotta keep them BIG!!

Updated:
2:11 p.m.- The nurse just told me the doctor prescribed Valium for Logan for sedation, probably because his body is getting used to the chloral hydrate. She said it's pretty common for babies to have that. Now, Valium sounds like some pretty medication for a 4 month-old. Of course I have to googled the side effects and all. I read that they do use it for babies, but not for long-term use. I need to double-check in a couple of days to see if they are still prescribing that to Logan.


Day 18 - Hospital Stay
Day 13 - Intubated

Logan didn't get his night time lung exercise last night. They have changed his "work out" schedule to 8 a.m. and 1 p.m., so that he can sleep at night. When I came in this morning, he was exercising, aka, on Cpap and not ventilator, and he was doing fine. The doctors came in to do rounds and I was able to get some more updates.

He has lost a little weight, back to 6.8 kg, down a little from yesterday. His CO2 level after his exercise is on the high side again. This is actually consistent to what he usually does. Because when he's breathing in those shallow breaths, he's not exhaling enough. Nothing too alarming at the moment. They will check his caffeine level again. I have asked about his diarrhea, since he's had it for about a week now. The doctor said it shouldn't be the antibiotics because it was a very low dose. They checked their medication book and noticed that a side effect of chloral hydrate (his hypnotic, sedation medication) is diarrhea. Since he's having quite a bit of chloral hydrate plus caffeine, no wonder he's having diarrhea. They have already run tests on his stools and urine, and they came back negative, thus ruling out any virus or bacteria causing the diarrhea. I asked if he would need extra oxygen when he goes home with a trach + ventilator (I am prepared that he will be getting a tracheostomy at this point). Doctor said usually yes, and at at least 30% (room air is 21% O2, in case you don't know, I didn't know until all this happened). Doctor said it's best to have a little reserve and I agree with her because I know Logan's oxygen reserve is very low. His current ventilator oxygen is set at 35% and it's ok to turn it down to 30%. He is actually doing well even after we turned down that extra oxygen concentration. We'll just keep what we're doing until the blood test results come back. Probably a few more days of bliss, the calm before the storm.

As mentioned before (or maybe I didn't write this down, I don't quite remember), I requested Logan's medical records from Kaiser for personal records. I picked it up yesterday. Thank goodness that lady didn't charge me. It usually costs $0.25/page. Logan has a thick stack of medical record since birth. It includes all the test results, notes written by doctors, etc. I haven't had the time to go through them all yet. I also received a call from Golden Gate Regional Center yesterday. The person told me to call him back after Logan is discharged because they need to know his level of functioning at the time.

The PICU is full house again today. I see a few more babies here. Actually, one of them is wailing at the moment. Poor thing. In a way, I am glad Logan is sleeping through most of this and doesn't feel any pain. It's so painful to hear a baby cry, especially in here.


*Picture of Logan sleeping soundly after we gave him a sponge bath and changed his central line dressing this morning.

He's 7 Kg (almost 15.5 lbs)!!

Day 17 - Hospital Stay
Day 12 - Intubated

Look at his big chubby cheeks! He's doubled his birth weight and he's not even 6 months old! For the first 2 months, we're so worried that he's not gaining weight as he's only at 10% on the chart. Now that he's in the hospital, just having milk directly into his stomach, with no exercise at all, he's gaining so much weight. When he was first admitted, he weighed 6.5 kg only.

Logan is currently doing his breathing exercise (only on Cpap) for 2 hours. The two hours will be ending by the time I finish writing this post. His respiration rate is good, still manage to be in the 50s and 60s, despite a few episodes of coughing and gagging that went up to the 100s. It seems like doing 2 hours of exercise is not a big problem. Going to 3 hrs would be a stretch. I actually didn't get to talk to any doctors today. The PICU is full house. They had admitted a few more kids and they are pretty busy. Even without talking to the doctors, I already know what they are going to say. Exercise, take it slow, and wait for blood test results. I am fine with it for the time being.

My sister, Auntie Mena, sent Logan a jade pendant that has been blessed. Because it could be a choking hazard, I attached it to his cute chubby thigh instead of his neck. It shouldn't interfere with what the nurses and doctors have to do with him. Hopefully, it will work out its magic and bring Logan good health.

I also went to the Social Security Office today to complete the application. Basically, Logan will be eligible for SSI benefits if he continues to stay at the hospital or if his stays last a month. When he comes back home, he won't qualify for any financial benefits because our household income is above their limit. But before anything could happen, they need to review his medical records first. Let's see, between $263/mo and having my son home healthy, I think I am going to choose the latter. However, if he can qualify for Medi-cal without the benefits, that would be better. We'll have to see.

After sending out the emails regarding the March for Babies, I've received overwhelming support and concern. Thank you very much!! I noticed that I have two donation tracker, one for the whole team and one personal. Some friends donated through the Team's page and some donated through my personal page. Don't you worry, everything will be accounted for and go to a good cause. If you want, you can be part of my team, have your own personal page and get support from your own friends. Oh, and please join the walk as well!

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How's Aidan doing lately? He continues to be a monkey. Teachers said he kicked a classmate yesterday because he was impatient. We all have to have a talk with him regarding that. Sometimes, he can be so affectionate yet at times so very impatient and act out. He's still not napping in school, so when we pick him up, he's been napping from 6 -10ish p.m., gets up and had dinner and then goes back to sleep at around 11:30 p.m. He just wouldn't nap!

We also got him a new booster seat as he's getting too big for his high chair. He is liking the big boy seat. It's nice and cushiony. I think would like such a cushioned seat as well.

Finding the balance of resting and exercising

Day 16 - Hospital Stay
Day 11 - Intubated

Don't worry, everything is fine. I know I blog a little late today but don't you worry, Logan is stable. The plan for him today is to do two 2-hour lung exercise (on cpap) only. We don't want to stress him out like over the weekend where he needed a few days to recover. Yet, I don't want him not to breathe on his own either. That's why the plan is to just do two 2-hour sessions. I had to leave early today to do a Costco run, so that we have enough toilet papers and pull-ups for Aidan :) By the time I left at around noon, the respiratory therapist hasn't come in to change his ventilator settings to be on cpap yet. They were waiting for the Chief to confirm some of the settings before doing that. Logan was doing fine during my stay in the morning. His respiratory rate was definitely calmer than the last few days. I will check with the nurse tomorrow to make sure he did fine with his exercises and his blood gas results are good. I believe for the rest of the week, it should remain pretty calm. We might, or might not receive the test results back next week. Just like I've been saying, we'll take it one day at a time, one issue at a time. Right now is to deal with the breathing issues.

Received a call from Social Security Office today. The social worker at the hospital has made a referral for Logan. I'll be heading over to their Campbell office tomorrow to see if Logan qualifies for any services. If he qualifies for Medi-Cal, that would be a great help. It can help cover some of the medical costs and future medical rental fees that our insurance doesn't cover. I don't even need him getting any SSI payments, just Medi-Cal would be awesome.

I left a message on Golden Gate Regional Center's intake voicemail last Friday and haven't heard back from them. The message said it might take him 1-2 weeks to return any calls. Doh! Must be due to all the budget deficit. I know I should have called them 2.5 months ago when Logan's pediatrician mentioned it. However, I was still in denial at that point. I guess I am slowly moving into the acceptance stage. I am pretty sure Logan qualifies for their services since he would be having different developmental delays, on top of his stroke.

It's interesting how I work with adults with developmental disabilities, and now I am a parent of one. I remember telling parents of my clients not to spoil their children, and to set boundaries. Now that I am a parent, how can I not spoil Logan and to give him the best? How can I not have the same type of worries that these parents, who I have counseled in the past, have? How can I not worry about my son living independently in the future? In a way, I am glad that I work in the field. I know there are great services, great staff, great social workers and program managers out there, that will provide for my son in the future. I know that he will be OK when I am not around anymore. That is, if I am given the chance to raise Logan up to be the best that he could be.

Had a very long phone conversation with my dear cousin Peggy today. She has been such a great emotional support to me, sharing with me her experience, tips and suggestions. I would be forever grateful. I will strive to be the best mother/social worker/nurse for Logan. Peggy shared her little realization with me regarding her son and Logan, and babies who have similar needs. When she's in the NICU, she observed that most of the babies who had the most needs were born in loving families. It seems like God has a plan for these little ones, that he knows they will be loved in the arms of their loving and caring parents. It comforts me to know that God trusts us in taking care of Logan, and that he's not born in a single-parent family who is struggling emotionally and financially, with no medical insurance.

Calmer today

Day 15 - Hospital Stay
Day 10 - Intubated

9:00 a.m. - Arrived at the hospital and saw the nurses and student nurses finishing up giving Logan a bath. He needed that bath! His arms were so stinky from the restraints and his lips were gummy from the tape. Nurses told me he still had a few episodes of high respiration rate last night and this morning, but definitely not as bad as yesterday during the day.

9:45 a.m. - Ped came in to do an ultrasound of his heart. I could see and hear his heart beating. I recorded a little clip of his heart. The whole process took about 20 minutes. Of course, he was mad at times because of the gel and poking, but he did fine. Ped later showed and explained to me what he did. Everything looks good. His heart isn't especially bigger, blood is pumping in and out, chamber sizes are good. That's good to know that the heart is fine. Hopefully, one less thing to worry about. Still waiting for rounds.

10:30 a.m.- RT came in to fix the tubes of his ventilator. There was a lot of water accumulated from the vapor of the warm water. I am thinking that might have caused the alarm to sound off like crazy yesterday. Also had his daily chest x-ray to check the position of his tube.

11:45a.m.- Late round today. Basically, it's going to be a quiet day for him (fingers crossed). We will try to have him exercise again today for just one 3-hour period to see how he does. Then he will be put back on the ventilator at a rate of 20 for the remaining of the day. He got so tired the previous days that we're starting slow. So far, he's been doing well and the alarm hasn't sounded off since they got rid of the water. I am hoping it's really was the extra condensation that's causing the problem and he wasn't really breathing too hard. Doc also said they might give Logan a little more drug today if he appears as agitated as yesterday. His body might have gotten used to the drug. He was on it every 6 hours before, and could be given every 4 hours. However, when we wean him off later, there might be a withdrawal, e.g getting fussy and won't fall asleep easily.

11:55 a.m. - Chaplain just stopped by and brought Logan some flowers (budding flowers, I should say). He said he's the messenger as someone donated them. How sweet. He checked in periodically to see how we're doing. He said it's good to see me sitting down coz yesterday he witnessed how I was by Logan's bedside most of the time because of the alarm.

12:15 p.m. - Cpap started and he's breathing on his own now. So the flowers (daffodils) are donated by the American Cancer Association. They gave Logan a little bear as well. Let's cheer on Logan to breathe! Gave Logan a half-manicure/pedicure. His nails are getting really long and dirty. How did dirty stuff get in his nails when he's not even touching anything?!?! Well, I could only do his left hand and foot, since the ventilator is on the right side and I didn't want to mess with the tube. He usually only raises his left arm, or I should say "allowed to raise" his left arm, I guess he can't scratch with his right arm quite yet.

2:00 p.m. - Uncle Kyle and Auntie Leonor came to visit Logan, and brought a little giraffe rattler for him. They commented Logan is looking more like daddy and is gaining some cute chubby weight.

3:00 p.m. - Logan's cpap has ended and he wasn't doing too well towards the end of it. His rate was getting high, probably because he's too tired from the lung exercises. He actually had a couple apneic events and the backup ventilator kicked in to help out. The Chief came in and showed the nurses some settings regarding the ventilator. She also suggested Logan might not need to do too many lung exercises and he has kinda proven to us that he's having a hard time breathing on his own. However, we could still have him do shorter exercises instead of long 3-hour stretches, so that he's not too dependent on it. She also mentioned some triage plans in case something happened to Logan after he's discharged. We would have to explore different options in the future, but should not jump the gun until we get back the results from the blood tests. The new batch of tests were sent off today, special preparation and delivery to Philadelphia. For the time being, we will keep Logan nice and comfortable. The Chief also explained a little more about the use of chloral hydrate to get Logan to sleep. He can have a higher dose, if needed, and it shouldn't cause too much harm to him.

Happy 4 Months Old, Logan!!!

Day 14 - Hospital Stay
Day 9 - Intubated

Logan turns 4 months old today!! Time flies and because he's in the hospital so much, he seems like a newborn to me. He has continuously gained weight, kinda hard not to when they feed him directly to his stomach. He was awake when I arrived this morning. I let his left arm breathe a little and took the restraint off. I took a video clip of him moving his arm, and will post that tonight when I get home.

He did a lot of lung exercises yesterday. After 6-8 hours of exercise, his blood gas results didn't look good and he needed the ventilator for the rest of the night. At one point, they needed to up his rate to 20 (he's been a 4-6 lately).

Today, he's going to start another routine of exercises. He will be on cpap and breathe on his own for 4 hours, then back on the ventilator for 2 hours while they check the blood gas results. He will be on this schedule for the rest of the day. We wanted to give him a chance to exercise and prove to us that he can sustain enough oxygen in his blood, before we decide to give him the tracheostomy. I also asked the doctors about his diarrhea for the past few days. Doctors have done a bunch of tests to check for viruses and a few came back negative. We're also checking for rotavirus, which is common. Doctors also said it might be the result of the antibiotics, but nothing to be worried about.

Another pediatrician just came in to ask me if it's ok to do an echocardiogram on him. I told him that he's had one done back in February. He mentioned that Logan's heart appeared a little bigger from all the chest x-rays that he's done. He suggested to have the cardiologist take a look at him and to do an EKG on him. If his heart is not pumping enough blood, thus causing the lack of oxygen, that is supposed that medication might help. It might also provide another piece of puzzle to his diagnosis. Since he's at the hospital, might as well get everything done.

11:15 a.m.- Just had his EKG. Mmm...those waves look a little funny. Not sure what they mean. Will have to wait for the Cardiologist to take a look.

11:54 a.m. - Logan is getting tired from his breathing and is breathing at a high rate with small, shallow breaths. The nurse is doing his blood gas and will put him back on the ventilator, so he's not so tired that he needs to play catch-up all day. His blood gas results were fine. But that just means he's working really hard to maintain that level. His respiration rate is really high and he's breathing really hard. He'll get some rest with the help of the ventilator for 2 hours, and we'll try again then.

12:30 p.m. - Doctor said his EKG looked fine but will still have the cardiologist take a look at it. She might still want to get a cardioechogram done since a lot has changed recently.

2:15 p.m. - Logan's respiratory rate is still very high. The alarm has been sounding off all day. They just gave him more chloral hydrate and hopefully it will calm him down and he will breathe better. The poor guy's lips look so dry and gummy from the tape.

3:30 p.m. - The Chief stopped by and told me that she's been in contact with the Geneticist and informed him of the findings from the Opthamologist regarding the cherry red spot. The Geneticist wanted another batch of genetic tests done. The Chief said the blood test will be sent to a lab at Duke and it'll take a week or so for the results to come back. If it's something wrong within this new set of tests, at least the disease is more manageable (though not curable) than the first set of test. For now, Logan should continue to work on breathing, but a tracheostomy should be on hold until the results come back, since one of those genetic disorders could explain his weak breathing pattern, and there might be an enzyme treatment to help with that. So we're back to where we start, wait until the blood test results come back.

4:00 - He finally calmed down and the beeping finally stopped. Took him 4 hours to do that. RT is checking with the doctor to see if we should exercise his lungs, since it's time.

4:30 p.m. - He didn't calm down for long! The Audiologist stopped by to give me the results of the hearing test. No good. Even though she said the test might not be perfect, due to the interference of all the machine, Logan appeared to have severe hearing loss in both ears. :( We need to do a follow-up appointment when he's able to get out of the PICU and go to the clinic, to get a more accurate test done. It appeared the nerves are not working properly, something called auditory neuropathy. But when I talk to him, he would open his eyes. It seems like he can hear me, but it might be just what I want to see or what I am imagining.

4:40 p.m.- They are going to give Logan a little break and not do any more lung exercises. It seemed like he's too tired from yesterday. He will rest today, setting the rate back to 20, and hopefully, tomorrow he's better. He's been very agitated and breathing fast since this morning.
The drug didn't seem to work. His body might have gotten used to it already. He can't be too sedated that he doesn't breathe, yet if he's not sedated enough, he gets agitated. What a catch-22!

Sunday Family Visit

Day 13 - Hospital Stay
Day 8 - Intubated

Today we all visited Logan at the hospital. Logan was exercising his lungs at the time, breathing on his own. He opened his eyes briefly when we were there. Either he heard all of us and wanted to tell us that he heard us, or we're just too noisy, especially when Aidan was there. Aidan was excited to see Logan. He didn't really know what was going on, except that Logan is sick and he's at the hospital. He didn't seem to be scared of all the tubes and monitor.

Logan was stable last night and was doing well. They will have him breathe on his own for as long as he could today, so that he could exercise his lungs and won't get too dependent on the machine. The nurses will check his blood gas every 4 hours to make sure he is taking in enough oxygen. As always, his breathing pattern is fine when he's awake. It's when he's sleeping that his breathing becomes erratic and shallow. Let's hope through a few days of exercise that he will get used to breathin again, and won't get lazy.

We talked some more with the Chief about the trach and the g-tube. She demonstrated how it all works with a baby doll, with a fake trach and g-tube. With the trach, it seems like when Logan is awake, it doesn't need to be attached to a ventilator. It's when he's sleeping that he might need some extra help. He should still be able to drink and eat and take a bath. But definitely not going out for a swim. If he gets a cold, then we need a suction machine to suction his mucous through the trach. Last time he got a cold, he couldn't breathe. The Chief said the g-tube might be a good idea, especially when she heard that we're assisting his feeding by squeezing the bottle. She's concerned that Logan might aspirate. It's a real technique to coordinate his sucking and my squeezing, so that he won't choke. With the g-tube, he can still drink from the bottle, but when he gets tired, we can feed thim through the tube directly into his tummy.

The Chief said that she's not recommending the trach at the moment. She wants to see how Logan does for the next couple of days before making a formal recommendation. Maybe with time, Logan would only need a cpap, and not actually get a trach and a ventilator. That would be the best case scenario. Fortunately, both the trach and the g-tube are reversible procedures. If he doesn't need that when he gets older and stronger, the wounds will heal eventually.

Bringing Aidan to the hospital is always a challenge. He has a 3-year-old attention span and we need to really keep him happy. We brought his Thomas laptop, plus my laptop to hold his attention. Even with that, he went in and out of the room and was too excited with the automatic door. Of course he figured out which button to push to get the door open as well. Overall, he did fine. This is his second visit to the hospital and I guess he's used to us tell him what not to do.

Will be going to the hospital this afternoon. For now, enjoy a little video clip of Logan yesterday.
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Day 12 - Hospital Stay
Day 7 - Intubated

So I got some updates from the Chief about how Logan is doing. Logan was put on Cpap earlier from around 11 a.m. to 3 p.m. They wanted to see how he breathes on his own without the support of the ventilator. He was breathing ok but the results from his blood gas showed that his oxygen level was not up to par. They did another blood gas after I arrived at around 3 p.m., to compare the results and it was still about the same. After that, he was put back on the ventilator so that he could rest a little. Logan was getting really agitated because he's not sedated, and he could feel the tube down his throat. He was moving and gagging, but couldn't get another dose of drugs until 4:30 p.m. They gave him some Tylenol, but it didn't seem to help much.

The Chief also discussed with me about options for ventilator. She proposed Logan getting a tracheostomy because it seems like Logan would be needing some help, and he can't be on the ventilator forever. I knew this discussion will come sooner or later, and I am actually prepared for this. She also suggested him getting a g-tube in this stomach to help with feeding, because he is such a slow sucker. We've been actually helping him with this by squeezing his bottle, but then he would gag. I need to think about this. It might be easier for us but if I can avoid one surgery, and just do a little more work to feed him, I'll do that. I know both tracheostomy and g-tube are pretty common and minor surgeries, but still, I need to do some research about it, and talk to my cousin to get more info. For now, they will have Logan exercise his lungs a little more the next few days, before we decide if a tracheostomy is appropriate.

The nurses are giving him morphine to sedate him a little. They need to re-tape his tube as he's been moving around quite a bit.

Uncle John and Auntie Katie visited Logan just now. Logan's first visitors and they brought him a Get Well balloon. Thanks!! If you want to visit, it's ok, but please let me know ahead of time and make sure you are not sick. As you can see from the pictures that I have posted, Logan is not in his cutest condition now. I don't want to depress you. I know you all love and care about this little guy. We really appreciate all of your generous offers in every way.

He opened his eyes!!

Day 11 - Hospital Stay
Day 7 - Intubated

8:55 a.m. - Arrived at the hospital to see my baby. Noticed he had his catheter in by his neck close to his shoulder. He also has restraints on both of his arms so that he couldn't move. The X-ray technician came in to get his daily Chest X-ray to check his tube positioning. Talked to the nurse and got some updates on him. He had one apneic episode last night. He's not as sedated now, that's why they needed the restraints on him so that he couldn't pull anything. If he woke up and go irritated, then they will give him more meds. He opened his eyes just now!! I haven't seen his eyes for a week now. I think he heard my voice and I reassured him that Mommy is here. He's semi-awake and his mouth is moving a little. Now I'm waiting for rounds to start to get his latest updates.

10:00 a.m. - The doctors finally came in the room to do rounds. I saw them talking outside for a long time about other patients and also Logan, and I was afraid they won't come in. So what's happening now is they are going to do the cpap 4x per day for 2 hours to see how he breathes on his own. Breathing is the most important thing to focus on right now. He's on the maximum dose of caffeine for now to help stimulate his brain to breathe. An Opthamalogist will see him today to dilate his eyes and evaluate his pupils, optic nerves, etc. He's on a low dose of antibiotics for the dilated kidney in case there is an infection. The VCUG will be in the future as he's still intubated, but in case there is an infection, the antibiotics should killit. The ph Probe result came back and he has no acid reflux! We don't know if his reflux has gotten better or he actually never had it. At least it's one thing less to worry about and 2 medications less to take. We had a long chat about what's going to happen now. We still have to wait for the results of the genetic tests but it will be a while. So we have to focus on his breathing. The ideal goal is that he can breathe on his own without the extra assistance of the ventilator. But it seems like his breaths are still very shallow and erratic. His lungs are find but it's just he's not breathing enough. We'll see how he breathes and see if his shallow breaths are enough to give him sufficient oxygen. If not, we'll have to talk about different options for him.

10:30 a.m. - The Geneticist called me during rounds. So I called him back and we discussed about what's going on with Logan. Of course, he can't tell me what it is until the results. He said he wouldn't be surprised if it's negative or positive with anything. Aside from MELA (one of the Mitochondrial diseases), he's suggesting other tests such as Hemophellia (blood clotting disease), amino acids, organic acids, lactate acids, pneumonia, etc. He explained that if MELA comes back normal, we could still do a muscle biopsy to see if there's anything wrong, though the results won't tell us specifically what's wrong. He agreed with the other neurologists that it should be a last resort as it's an invasive procedure. He said if we have a diagnosis of some sort, we will definitely have a meeting to talk about it. He and the Chief also prep me that sometimes we just don't know the answer and we'll just have to treat whatever is going on.

11:00 a.m. - Nurses and respiratory therapists are all here at the moment to re-position Logan's tube. The Chief saw the x-ray and wanted the tube to be 0.5 cm out. They will redo an x-ray at 1 p.m. to check the position again. They are going to change the cpap to no pressure support for 2 hours at a time, to see how he does. Let's hope he can past this test! He's awake now after all the commotion. I talked to him and saw him looking at me, but I really don't know if he can see me. :(

11:30 a.m. - The nurse gave him some eye drops to dilate his eyes in preparation for his vision test. He's so awake right now. Moving and wiggling. It must be uncomfortable to have that tube inside of him. He has a lot of secretion in his mouth. I hope it's only from the inability to swallow and not because he's sick.

12:30 p.m. - Eye doctor is not here yet. He's supposed to come at noon. Logan was moving around so they have to give him some morphine to calm him down I was hoping he could do without it, but the more he moves, the more irritated he is. Now he's finally sleep. That drug works fast. I know he's sleepy too as he's been awake for over an hour now.

2:15 p.m. - As I came back from my lunch, the Opthamologist was finishing up the eye exam. He told me some complicated stuff and my understanding is, as far as his vision goes, he can see in a way. But his vascular layer was thinner than normal (not quite sure what that means) and he mentioned something called the cherry red spot. One thing I understand is, he has a delay reaction to following the finger if you move it from side to side. Technically, if his overall health gets better, his vision will get better. But if whatever is causing his health to deteriorate, his vision will deteriorate as well. He explained it's like when you have a high fever, your vision will get blurry and won't be as good. But as you get better, your vision will improve. Whatever other findings he has, will help the pediatrician and other specialists in determining the answer. The other abnormal findings that he has will be part of the list of symptoms to the big unknown. I guess I should be relieved because I have this gut feeling that he can't see me. I am happy that I a wrong.

2:30 p.m. - And of course, I have to just go ahead and Google whatever I don't understand from the doctor. And of course, the result of my search was not good. it showed another disease (Tay-Sachs disease) just as deadly as Mitochondrial Disease. I really need to stop doing this and be patient until the blood tests come back.


5:00 p.m. - Almost time to go home. I think Logan will be stable and I hope he will be stable for the rest of the night without any apneic episodes. Please pray for my little boy.


p.s. I notice that I have readers from places that I don't know anyone. Do you mind telling me who you are in the comment section? Friends or family in Scotts Valley, Lake Mary, Salinas and Beijing?? Thanks for reading!

p.s. Even though I might not respond, I do read every comment left for each post. Thanks!!

Making a conscious effort to think positive

*Updated 3:30 p.m.
Just talked to the doctor to get an update on Logan. It seems like last night he had a few episodes where he needed to be stimulated and put back on the ventilator. He was fine during the day but at night, I guess that's when he had his deep sleep and he forgot to breathe again. The IV on his head was out, but they were unable to find another spot to put it in. Unfortunately, they need to put a catheter either on his neck, chest or groin area to have a central line to give him medication, if needed. Doctor said kids on a ventilator usually have a central line for medication but because Logan wasn't on too many meds, they were holding off on giving him one. Since they can't find another spot and they've already tried his head, they need my consent over the phone for that. I can't really say no to it esp. when he's still having these apneic episodes. Of course, the doc had to tell me the risk of the catheter, such as, bleeding, infection, punctured lung (if it's on the neck or chest), and clots. Doctor said they will check his caffeine level in his blood first and then see what dosage to give him tomorrow (caffeine stimulates the brain to breathe). The opthamalogist will stop by tonight to evaluate his vision. The bloodwork for all the genetic tests were sent yesterday afternoon. On a positive note, his urine test came back negative, as well as his lactate and ammonia level. It's a relief that his lactate level is normal because that is a big indicator of Mitochondrial disease. Normal ammonia level indicates his liver is working fine. But doctor said because of his stroke, there is still a chance that it might be Mitochondrial Disease because it's still a mystery why he had it. I asked if Logan had the stroke when he's inside of me, would his first MRI showed that, and she said it would. Therefore, the stroke had to have happened after his birth. Now that the bloodwork is sent, the real waiting period has begun.

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I didn't go to the hospital today because I am still coughing pretty bad. I didn't want to get Logan sick. I will definitely go tomorrow, while wearing a mask, just in case. I did call the hospital this morning to check-in. The nurse told me they tried to wean him off the ventilator again last night, but he didn't like it. This morning, they did it again, and he was able to breathe on his own for 45 mins (that's when I called), and was doing fine. They will continue to have him breathe on his own a few times a day for an hour, to see how he does. I told the nurse to have the doctor call me when she's done with rounds so that I could get more updates. I haven't heard from the doctor yet. I will probably give her a call later this afternoon if I don't hear from her.

On the other hand, I am trying very hard to stay positive. I am trying to block all the negative thoughts, e.g. Logan's tough life facing him, how we're going to raise him, his difficulties, our difficulties, the test results and of course, Mitochondrial Disease. If I don't make a conscious effort, these negative thoughts will creep out of nowhere, esp. when I am driving. I am trying to rest and stay positive, so that when the results of the blood tests come, I will have the energy to deal with the result. Even though I am sad that I couldn't be at the hospital to morally support Logan, in a way, I am relieved to be away from the hospital. Hospitals, despite how nice people are, are depressing, esp. in the Intensive Care Unit. I think a breather will be good for my soul. However, I don't want to stay away from Logan for too long. I don't know if he can hear me (because he's sedated and he might have a hearing impairment), I still like to talk to him once in a while. A few words of encouragement here and there.

Don't worry, we are doing fine, for now. We're trying to stay strong and positive. A dose of The Ellen Degeneres Show a day and some Sprinkles Cupcakes are keeping me healthy mentally.

Logan is fighting and we need happy thoughts.

I am blogging from home now because I caught Aidan's cold. I went down to see Logan for a few hours but I didn't want to get him sick. He got a low-grade fever last night and I worried it's me passing on my germs to him. So I figured he's in good hands and I should rest as well, since it's going to be a long fight.

So yesterday afternoon, the Chief of Pediatrics came to talk to me. I wonder why she's the one talking to me, probably because I've expressed that I wanted Logan to get transferred. She said she would be around next week as the Director of Pedi is up in Sacramento due to a staff shortage. Anyway, she said she has talked to the Geneticist and he said it's unlikely that Logan has Mitochondrial Disease, but he's not ruling that out completely. He's the one that has seen Logan when he was in the ICN in San Francisco when Genetics was consulted, and he remembered Logan. He gave the PICU a list of other tests that should also be run, in addition to the Mitochondrial Disease one. It might be something else, it might not. For now, we won't know until we get all those tests done, and even if we get those tests done, we might not know. The Chief reassured me that the Genetics community is small and the Santa Clara Geneticist has also consulted with the one in the San Jose/San Theresa Kaiser. I guess she wanted me to know they are doing everything they can, so that I won't transfer Logan to Lucile Packard. She said the experts at the lab are really good in making sure all the tests are done and might add on tests that should be done but not checked off. So we'll see.

Logan has been doing well with his breathing. When I got to the hospital this morning, his respiration rate set for the ventilator was down to 4. They actually stopped the ventilator for an hour, decreased the sedation medication to assess how Logan breathes on his own. He did fine and the blood gas confirmed that he was doing good. However, when the nurse was drawing blood out, he got mad and stopped breathing for a while. The backup ventilator kicked right back in to support him. Aiya aiya... he just can't keep on doing that! He has really shallow breaths and I can see that from the monitor of the ventilator. They are going to wean him off the ventilator two more times today for an hour, to see how he's doing. They are repeating the urnine test. Also the culture from the mucous a few days ago came back negative. They will stop his IV antibiotics now. The doctor said he might not even had a UTI, but the urine sample might just be left out and bacteria grew. However, because the x-ray showed that he has a dilated kidney, and he can't do the VCUG because he's ventilated, the Urologist recommended giving him small doses of antibiotics orally (through his ng tube) for a few days in case there is a problem.

The audiologist completed part of the hearing test yesterday and will finish up this afternoon. Then we will see if he has any hearing problem. Because the midbrain controls vision and hearing, and movements, I am worried he will be blind and deaf/mute plus unable to walk. I have requested to have the Opthamalogist do a vision test on Logan once he's not sedated anymore.

For now, we're trying not to think about the negative. It will be weeks before we know the results of the blood tests and I don't want to go crazy. We'll just keep cheering Logan on to breathe so that he can be off the ventilator, and I can hold him and feed him again. I know life will not be the same when he gets discharged this time. His childhood and adulthood will be difficult, but we'll be there to support him. I hope Aidan will grow up to be a really great and strong big brother to Logan. For now, Happy thoughts!

Also, I would like to thank Peggy and Alex and all the friends at Yahoo for the Dinner Drive that Hank told me about. Thank you for helping us with dinner. It's been difficult cooking dinner since we are getting home late and are so exhausted. By the time we cook, it's already bedtime for Aidan. I would also like to thank everyone's well wishes and prayers. We're blessed to have loving and caring friends.

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.

MRI and pH Probe Day for Logan

9:45 a.m. - Rounds time. Logan has stopped feeding through the NG tube since 4 a.m. in preparation for his MRI. He's scheduled to get the MRI at 11:00 a.m. today if nothing changes. Then he will get his ph Probe. His current weight is 6.7 kg, I think he's been gaining weight, probably not as much as he should be. His lungs were clear, vitals were good. They had to increase his Midazolam (sedation drug) from 0.2 ml to 0.3 ml because he was awake and moving around. It seems like they kept on increasing his drug, it started all at 0.1 ml, I think. From the cardiovascular and respiratory standpoints, he's stable. After the MRI, they will assess to see if he should continue to be sedated and intubated, so that we can better assess his episodes. Will also consult with GI doc to see if he can continue feeds and taking his acid reflux medication after the probe. Also consult with pulmonologist to see if his bi-pap test schedule for next week is still necessary as he has episodes even though he was on it here. I asked how we can tell whether he has reflux since he's sedated and intubated, and we couldn't check the apnea episodes against the probe. Ped explained that even though he's sedated, he could still show signs of discomfort, e.g. movement of his arms and legs, or cough and gag. Then we could tell. I asked again about the seizure activity, and they think it's probably not seizure, but might be something neurological as he has central apnea. It's also likely that the MRI will show that everything is normal and we will have to evaluate again. Logan is scheduled for his Synagis shot on the 11th and I've requested him to get that today, while I'll cancel his appointment in Daly City. Logan will continue to be on antibiotics and hopefully, they will rule out pneumonia. They will also give him caffeine later to see if it will stimulate his brain to wake up and breathe!

10:00 a.m. - The nurses and respiratory therapist are getting him reading to go down for the MRI. He's hooked up to a different, portable monitor and I think they will wheel him down at 10:45 a.m. I will try to go down with him and wait in the waiting area.

11:20 a.m.- still waiting for the MRI to give us the go. They have been changing times on us. I guess there are other emergencies, and I understand that. Will continue to be patient. They are trying out a new ventilator that can go into the MRI room. If not, the respiration therapist has to bag him to give him oxygen the whole time Logan is in there.

11:40 a.m.- Wheeled down to MRI

12:10 p.m.- MRI starts. I didn't wait downstairs as there isn't any room to sit. I actually went over to Patient Records and requested all of Logan's blood work and scans. Unfortunately, I need to do a separate request for San Francisco. The majority of his genetics and bloodwork were done there. They are going to charge me $0.25 per page, let's see how many pages Logan's medical record consist. I bet it's a huge pile!

1:00 p.m.- Came back from MRI and soundly asleep. Nothing eventful happened (good thing!). GI is putting the pH probe in him at the moment and will stay there for 24 hours. Because of the anesthesia, Logan will be sleeping for a while.

1:15 p.m. - GI showed me the "event" button to press in case I see that he's gagging or coughing. An x-ray has to be done to check the position of the ph Probe. Pulmonologist stopped by and said he probably doesn't need the sleep test next week. His lungs are clear and all chest x-rays look fine. Now we're just waiting for results of all the tests and cultures.

3:37 p.m. - Just made a couple phone calls to Lucile Packard Children's Hospital and the Kaiser membership to see how the insurance can cover, should a transfer occur. Basically, if we can get a doctor from Kaiser to make a referral to LPCH, then Kaiser insurance will cover everything, as if we stay at Kaiser. The tricky part is to get a doctor to actually make a referral. I guess we'll have to see the test results and all that, discuss further actions before I make that request. Honestly, all the doctors and nurses that I have ever encountered at Kaiser in SF and in SC have been great. But when it comes to my son's health, I hope they understand why I would want to request the referral.

Aidan and his new preschool

Let's talk about Aidan for a minute while I am waiting for the doctors to come in for the rounds.

Today is Aidan's second week of his new preschool. First week was tough as he's not used to being in such a scheduled setting. He was running around, was difficult to get him to sit still during circle time or group activities. He's just so curious about everything and too excited. Of the 5 days he was there last week, he only napped one day. He was so tired after school that on his way back home, he slept through the whole trip, and even slept till 11:30 p.m. a couple nights. Poor guy, it's normally hard to get him to nap, now in a new environment, it's even tougher. Hopefully, this week will be a little easier.

Last Friday, the teacher asked if Aidan has been evaluated for Autism because he has such an obsession with doors and washing his hands. I told her that he hasn't and he is very interested in doors. But probably not washing hands, but just to be able to play with water. I don't think I can handle a child in the hospital, and another one with Autism. I think I will go crazy. However, even though I haven't worked with kids with Autism, with my experience working with adults with Autism and in the spectrum, I don't think Aidan is autistic. He is very touchy-feely, very sociable, has great eye contacts, definitely not monotone and is a very happy child. Aside from the obsession with doors, but then he's not just standing there and play with one door, he would go around and play with all the doors available. He's not obsessed with washing hands because at home, I have to drag him to wash his hands sometimes. He does like to play with water (provided it's not in his head or eyes). So, my unofficial, unprofessional diagnosis is, he's not autistic.

Should be a stable Sunday until action on Monday

I came in at 10:45 a.m. and just missed the rounds. Darn it.. it's the DST change that threw me off, plus I was really tired yesterday.

Basically, the nurse told me they have increased the respiration rate of the ventilator to 24 breaths/min instead of 16 when I left yesterday. He wasn't breathing a lot whole, probably because of the sedation, or he's just having those episodes. At 24, it's about the rate of a baby his age. They started feeding him through the ng tube this morning at 20 ml/hour. When I arrived, they increased it to 25 ml and decreased the IV fluid. On top of that, they found something growing in his mucous. Since he was coughing so much yesterday, they did a culture of his mucous and found something growing. His RSV test was negative, so I am not sure what type of virus/bacteria he has again. He's going to be on a different antibiotics, one that helps with this and his bladder infection. There's a chance that he might get his MRI today, but we don't know when. Hopefully, it's today and the MRI can tell us something.

Tomorrow, the team of specialists will be back and maybe we will have another action plan. It's been suggested that I get a second opinion. Aside from the HMO crap, I don't even know which specialist I should get a second opinion from. His current team of specialist includes: Director of PICU (his primary pediatrician here), a few other PICU pediatricians, 2 Pedi Neurologist, Pedi GI doctor, and Pedi Pulmonologist. Where do I start and how? I am hoping by Monday when more tests are being done, we will have an answer.

11:30 a.m.- His IV came out and the nurses are trying to put it back. Didn't work and they need to give him a new IV. He's semi-awake and wiggling. The nurse had to give him drugs to sedate him through his ng tube.

12:00 p.m.- Still couldn't find a good spot. The nurse just asked me if it's OK to put in on his skull. I can't say NO to that. It's not the first time and I know it's hard to see him like that, but he needs his IV. I hated seeing him like that.

12:05 p.m. - He fell asleep now, either because of the drugs or he's just tired from struggling. Now the nurses and Respiratory therapist are re-taping his ventilator tube, re-starting his IV fluid and all the fun stuff.

On the other hand, I wanted to purchase a Acid Reflux wedge pillow for him. He looked so uncomfortable lying in bed with all the towels. This pillow isn't cheap, but he can use that in the hospital and I can bring that back home for him. I called Hank to order it at home and see if we can get it in a day or two, so he can use it soon. I checked-in with the doctor and he's fine with that, as long as he has that 30 degrees elevation.

12:30 p.m.- All the commotion is over. Now he's asleep and the room is all calmed down again.

2:20 p.m. - Logan is nice and calm and sleeping. I think the MRI will be done on Monday instead of today, which may not be a bad idea. Since he's stable, I will leave soon and be back early tomorrow.

Logan is intubated :(

Last night I received a phone call from the doctor at around 12:30 a.m. Luckily, Aidan was awake and he heard my phone ringing. The doctor said that Logan had many episodes between 8:30 and midnight. They tried giving him caffeine to stimulate his brain to breathe, but it didn't work. So they decided to intubate him (put a tube in his mouth to help him breathe). His heart rate and blood pressure didn't dip down too low, but his respiration rate and oxygen saturation did.

8:00 a.m. - Hank took Aidan to grandma's place because he got a cold and he couldn't go and visit Logan in the hospital. He wanted to, but I explained to him that he's sick and if he's sick, he couldn't go. I can't risk Logan getting a cold on top of all of this.

9:00 a.m. - Got to the hospital and saw my poor baby with tubes through his nose and mouth. Even though this is not the first time I saw him being intubated (first time was when he had to be sedated to do a MRI), I couldn't help but cry like a baby. Throughout his hospital stay, I was able to hold it in and not break down, but I guess I have reached my limit. The nurse explained to me that he has to be somewhat sedated because if not, he would start moving and pulling his tubes. They are also monitoring his carbon dioxide level to see how he's eliminating it. Nurse told me that if his respiration rate is over 20, then he's breathing as well. But if it's less than that, then it's the machine doing it.

9:45 a.m. - They did another chest x-ray on him to see the position of the tube. After the doctor checked it, he said it was a little too far in, and would like it to be 1 cm out.

9:50 a.m.- Logan during the chest x-ray. I saw his legs moving. I guess he's not totally sedated and he's awake enough to know someone was messing with him. He's been awake since and it's alost 10:40 a.m., as I type this. He tried to grab the tube, of course. The nurse sucked up some secretions from his throat several times. The respiratory therapist and the nurse repositioned his tube. The nurse had to give him some more drugs to sedate him, but my little boy is such a fighter that he didn't want to go to sleep just yet. I guess it's a good thing that he's still himself (wiggling, pulling, and waving his arms and legs) when he's somewhat sedated? Now I am waiting for the doctors to come and do rounds.

10:45 a.m. -Logan is finally asleep but the machine still keeps on making noisy ding ding sounds. His respiration rate is over 20, that's a good thing. It seems like there's a more serious case next door. I saw a very tiny baby, probably a preemie who was discharged from the NICU but now back to PICU. That baby is so tiny compared to Logan. I hope his/her family is doing OK. I am sure they have gone through a lot, probably more than us.

11:40 a.m. -Just finished with the rounds. We talked a lot, but of course, we don't have any answers yet. Let me see if I can write down what we talked about clearly. Last night, Logan was intubated at around midnight. Caffeine, Zantac, antibiotics, and Midazolam (sedation medication) were given to him. He had good urine output. The doctors talked a while about the pros and cons of giving him Zantac. They said adults sometimes have upper GI bleeding when intubated, thus needed Zantac or some other meds. But the incidence of that happening to kids is low. They gave him Zantac because the episodes worsened when all of his acid reflux drugs were discontinued (thus may be what caused the number of episodes) and also because it was their standard procedure. But the Director of PICU also said there's been debates whether to do so for kids within the last 5 years. We go back and forth about whether it's neuro, or GI or respiratory. My uncle, who's a retired pediatrician, mentioned something about hypoxic seizures. I asked the doctors about it and the director said it's possible as well and it might or might not be picked up by EEG or MRI. We talked about giving Logan a MRI, and will consult with neurologist, esp. since he's sedated anyway. The ultrasound of his kidney showed that the left side is a little dilated. Doc said it could be normal, or not, which might be why he has a bladder infection.

Action Plan for Saturday and Sunday:
1. Discontinue caffeine - since he's on ventilator, it might interfere with pH probe on Monday
2. Discontinue Zantac
3. Feed through NG tube if MRI is not today
4. Continue antibiotics
5. Continue to check blood gas
6. Repeat swabs to check for infections
7. Decrease ventilator rate

Action Plan for Monday:
1. ph Probe
2. VCUG - dye to check bladder
3. MRI - if not done on the weekends
4. consult with pulmonologist to see if another bronchoscopy is necessary

12:00 p.m. - Logan was coughing and the nurses and respiratory therapist suctioned his nose and throat. There was a lot of secretions. They kept on doing that periodically throughout the day.

3:25 p.m. - Got back from lunch with Hank and we're both at the hospital. Logan is waking up and wiggling. He's still coughing occasionally and needed suction. We'll just have to make sure he doesn't wiggle too much or try to pull his tube out. He can't have another dose of drugs to sedate him until 4:15 p.m. I also noticed that his ventilation rate has been reduced from 20 to 16.