Sunday, March 27, 2011

Twins Blog - Mar. 27, 2011 - "This was nothing"

They reduced Aidan's oxygen supplement levels to about 30%. A few weeks ago, my wife and I would take this as good news. But now, we can't help but think that this is just a ploy by the doctor to make it seem like he's doing work. It's complete BS, of course. Adjusting the oxygen levels is as simple as putting a note in the chart to instruct the nurses to do so. It doesn't do anything about his apnea episodes. He only had 1 episode over the last 24 hours and didn't need to be bagged. But our hopes aren't up because last week, there was an instance where he didn't have one for over 24 hours only to have multiple episodes the day after, and the day after, and the day after, etc. We'll still be pushing the doctors for treatment plans and tests until they exhausted all options or until Aidan outgrows the apnea himself.
On a lighter note, Aidan has been very alert and adorable the last few days we came to visit. He looks very much like Ethan except for a few differences: a birth mark on his left temple, he has less hair, and his hair is more curly.  Most of their expressions are fairly similar.

We took Ethan for his immunization shot yesterday. A few items of interest to note:
  • We watched as the doctor inserted the syringe needle into Ethan's thigh and we didn't really feel anything. We didn't cringe or felt sorry for putting our child in pain. We just looked at each other, smiled and shrugged. It may sound like we were being emotionless parents but it's just that we've seen much worse when Ethan was still in the NICU. This was nothing. Ethan still carries the battle scars from numerous IV sites where multiple catheters was left in place for days. This doctor made a single insertion and the needle was in&out in 2 seconds. Seriously, this was nothing.
  • Ethan took the shot like a man. That's not to say he didn't cry or feel any pain. He cried when the syringe was inserted obviously because it was uncomfortable. But the volume was tolerable. We've heard him scream louder at home when he's hungry. The crying continued for less than a minute. By the time I had him back in my arms, he was quiet and happily sucking away at his pacifier as if nothing happened. I've seen children at age 1 or 2 take shots and then just wail all out for 10-15 minutes. In comparison, my boy is less than a month old adjusted.

Thursday, March 24, 2011

Twins Blog - Mar. 24, 2011 - "Trust"

 Ethan is just too cute and adorable at home. We can't wait for Aidan to finally join him. I think we've finally gotten the hang of caring for Ethan. Adding Aidan to the mix should be pretty seamless. It wouldn't be exactly doubling the workload. We'll just be doing everything twice.

Aidan is still experiencing the occasional apnea spells. Every time we go visit him, we ask the nurses how many apnea spells he's had in the last 24 hrs. These days it's usually between 3 and 5. So, we're still praying for his apneas to go away and stay away.

A  revelation hit us in our last hospital visit. A nurse pulled us aside and cryptically suggested that we make an appointment to see Aidan's attending doctor. The message came as a shocking surprise but at the same time, it was clearly evident: Aidan was not getting the medical treatment he deserves.

We had trusted our doctor and it was clear that this trust has been abused. Aidan has been off the vent and suffering from apneas for a month. There were no interventions during this time. About three weeks ago, we asked the doctor for his treatment plan. His response was basically "wait-and-see". It's a fact that apneas tend to just go away on their own, so we accepted this response at the time. We also suggested that perhaps it may be reflux but he brushed it aside saying that it was unlikely. Again, this was almost 3 weeks ago.

Just a few days ago, the nurses informed us that diuretic drugs were prescribed after the doctor personally witnessed one of Aidan's apnea episodes. We didn't think too much into this at the moment but now, it's clear that this was a reactive response and I have reason to believe that the prescription may not even be appropriate.

The next 24hours were truly hectic. We requested an emergency meeting with the attending doctor. Then we were told that the attending doctor was unavailable and that the on-call doctor would be able to see us. So, we agreed but demanded that a more senior doctor was present. We were told the senior doctor was unavailable. So, we decided to consult the hospital's social workers to see what action we can possibly take if we're unsatisfied with the doctor's medical treatment. But apparently, we contacted the wrong department and they subsequently led us to the hospital's public relations officer who handles complaints. We told them that we're not here to complain but we did express our frustration to them. We asked if we can request a different doctor or even move to a different hospital because we have reason to believe that our current doctor is incompetent. It didn't seem like we were able to accomplish much because they kept telling us that we need to meet with the doctor first. So we asked if they can send someone to join our meeting because we felt that a 3rd party needed to be present. They said no but suggested that we ask the head nurse of the NICU to join the meeting.
Shortly after, we received a phone call saying that the senior doctor has agreed to meet with us along with the on-call doctor. Clearly the public relations officer tipped them off which was to our advantage. We arrived for the meeting and asked the head nurse to join us. She agreed. The tables were now set. As Han Solo would say, "This is where the fun begins."

A couple of highlights from the long meeting:
  • The doc kept going on and on about Aidan's underdeveloped lungs. In less colorful language, my wife basically told him to shut up and stop blaming everything on his chronic lung disease. CLD is such a general condition that you can use it to explain everything.
  • I asked him what are they doing about his apnea. The doc insisted that it's not apnea and that it's a behavioral thing. I called his BS and told him that it is apnea because he's not breathing. That's the definition of apnea. Before his rebuttal, I told him, "Ok, you say it's behavioral. What are you doing about his behavior?"
    The doc said that they were monitoring Aidan's stats and adjusting his oxygen supplementation accordingly. He also said that Aidan's condition is fairly consistent with what similar preemies experience. This was complete crap and we need to look no further than Ethan's condition. I told him that means they're taking a wait-and-see approach and this was not acceptable at this stage. My wife asked them why they were not proactively trying to determine the cause of the problem and then specifically targeting the cause with the appropriate treatment.
  • I then asked "Shouldn't you be running all sorts of whatever-tests?"
     Perhaps trying to poke fun at my lack of medical terminology the doctor actually asked me "What whatever-tests?"
    I counter with "You're the doctor. You tell me!"
  • The next part is just fun. The doctor goes ahead and mentions several possible tests that they can conduct but seems to suggest that now was too early a stage to warrant them. We knew that was BS. We did our research and knew exactly what those tests were. After he was finished, we basically said something along the lines of: "Ok, all those tests you just mentioned? Do it."
  • Then it seems he was trying to buy some time by saying, "Ok, but I'll have to consult with this doctor and that doctor before I can run those tests."
    We responded with, "Ok, go set up those meetings. Consult them. Do whatever you have to. But do it now"
  • Towards the end of the meeting, I told him that I would like a another meeting a week from today to followup on everything discussed. His initial look and response was that of "Seriously, is that necessary?". But my and wife and I stared at him with dead serious eyes to let him know that the request was not a question. Game, set, and match.
It's just utterly ridiculous that we needed to push the doctors for treatment. I thought ethics were one of the first things that's taught in med school.

Wednesday, March 23, 2011

10 habits of Hong Kong drivers that boggles the mind

In no particular order:

1. Sabotage the effectiveness of the seatbelt.
This really applies only to taxi drivers. I've never seen a HK taxi where the driver's seatbelt is properly worn. It's always worn too loose with the help of a wide assortment of tools. I've seen the following items used to keep the seatbelt loose for the driver: binder clips, bag sealers (ie, those things that you use to seal an opened bag of chips), folded pieces of cardboard, tape, safety pins.
He's essentially not wearing the seatbelt at all. It's just draped over him. In an accident, it would probably be a choking hazard (if he's not thrown through the windshield).

2. Flash emergency lights when hard braking.
I suppose the driver's intent is to warn the car behind so that it doesn't slam into him. But the logic just doesn't make any sense. If the car behind is going to rear-end you, blinking yellow lights at him won't do anything. Besides, every car already comes with a feature that warns other drivers when brakes are deployed. They're called brake lights. If the driver behind isn't pay attention to your brake lights, they sure are not paying attention to your emergency flashers. How's this for an idea? If you want to minimize the risk of someone rear-ending you, don't hard brake.

3. Flash turn signals when going through bends.
Turn signals are meant to notify other drivers of changes in directions of your vehicle; not changes in directions of the current road. Steering left through a bend is not the same as making a left turn. It's not like you have the option to go any other direction. It's like telling the drivers behind "Hey, the road is bending left. Rather than driving my car off the road and down the cliff, I will be following this bend. I just thought it would be good to let you know that."

4. Flash turn signals midway through a lane change or a turn.
Why bother? This is like calling someone 29 minutes into your appointment to say you will be 30 minutes late. Don't even call. There's no point. You've already pissed someone off, so you might as well just show up.

5. Shift to neutral and apply hand-brake when stopped.
I suppose the driver's intent is to save fuel. This is an ineffective habit and is often used in combination with numerous other fuel-wasting behaviors. For example, hard braking, hard accelerations and tailgating.

6. Fail to shift back to drive and release hand-brake prior to stepping on the gas pedal.
This poor habit just damages and shortens the lifespan of the transmission and brakes. If you're going to practice the ineffective habit of shifting to neutral and applying the hand-brake, the least you can do is to be able to properly reverse your actions to get the car moving again.
On a related note, I've seen some drivers shift to park as an alternative to shifting to neutral and applying the hand-brake. They do so even in stop-and-go traffic. I can't even imagine the type of wear-and-tear their transmission goes through.

7. Occupy two lanes for the longest possible time while changing lanes in stop-and-go traffic.
I can't even rationalize why people do this. When changing lanes in slow moving traffic, either do it by steering hard into direction of the lane you want to switch to or don't do it. Why do people think it's ok to merge gradually into a lane when it's obvious that they're just holding up both lanes unnecessarily.

8. Line plush dolls across rear window.
I don't mean one or two plush dolls. I'm talking about the entire cast of Winnie the Pooh and all the variations of Disney's Stitch. If it's a woman behind the wheel, this gives off the impression that she's childish. If it's a man, it makes him look like a sissy. In terms of safety, it compromises the driver's ability to see through the rear window.

9. Line figurines across the dashboard, often right on top of where the airbags deploy on the front passenger side.
Again, I don't mean just one or two of those bobble-head things. I'm talking about every single McDonald's Happy Meal toy ever made. First two sentences of #8 applies here as well. In addition, people who do this are just putting themselves at risk. In an accident, I can foresee two deadly possibilities. The driver/passenger may ram their head against the figurines. Or the airbag will deploy which will launch the figurines as high-speed projectiles in random directions at everyone inside the vehicle.

10. Flash the right turn signal when entering a roundabout.
The car is steered to the left direction when entering a roundabout; so why does the driver think flashing the right turn signal is appropriate?
In fact, why flash the turn signals at all? #3 applies here as well. There's only one direction to go. It's not like it's possible for the driver to enter the roundabout going counter-clockwise against the flow of traffic.
Perhaps the driver wants to signal to the cars already in the roundabout? If they flash the left signal, it won't be visible to cars already in the roundabout; so they flash the right signal. But it's not necessary to signal to the cars already in the roundabout! Your car is not invisible. They see your car. They know you're looking to enter the roundabout. It's not like they see your car and think to themselves "Hey, there's a car at the entrance to this roundabout. But he's not flashing his turn signal. I guess he's just parked there enjoying the show."

Obviously, not everyone on the road in HK do these things. But enough of them do (especially taxis) to be enough of an annoyance. Are there any more that I missed?

Wednesday, March 16, 2011

Twins Blog - Mar. 16, 2011 - "You can do it, Aidan"

Poor little Aidan is actually larger than Ethan but is still on the nasal cannula while going through several episodes of apneas and bradycardias every day over the past few weeks. There's not much that can be done. We're told that Aidan just needs to "outgrow" his As & Bs (as they're known).
As & Bs are very common in preemies but it doesn't make them any less scary to witness, especially for parents. The infant's face would suddenly turn purple. Reviving the child generally involves physical stimulation like striking the foot. If that doesn't work, the Ambu-bag is used. It literally feels like the baby has died for a moment before being brought back to life. I'm sure that statement makes no scientific sense, but it really does feel that way.
Fortunately when we visited Aidan on the 15th, we were told that he has not had a single A&B episode in the past 24hrs.
On the 16th, he had a single apnea episode. But his blood oxygen concentration levels looked much better than several days ago. Our fingers are crossed in hopes that he's in the process of outgrowing his As & Bs. In other good news, Aidan is pretty good at oral feeding; that is, much better when compared to when Ethan started.

Ethan has now been home since the evening of Mar 13 and he has been more adorable than we ever imagined. A couple of things we noticed about him:

  • He's very used to noise since things get quite loud in the NICU.
  • He sleeps through much of the day, waking only during feeds, changes, baths, and occasionally random periods where he would just look around.
  • He likes to be held for a while after each feeding session. If we try to put him down after we burped him, he'll cry to be held.
  • He especially likes the baby room which we wallpapered and floored with some colorful patterns.
  • Sure, it's been just a few days, but he doesn't appear to just cry for no reason. He doesn't even cry if he has a poopy diaper. The only reason he would cry is because he's hungry or he wants to be held.
  • He loves to be talked to. He would listen intently with his eyes opened. When I run out of things to talk about, I just count to him.


Monday, March 14, 2011

Twins blog - Mar. 14, 2011 - "Welcome home, Ethan"

After exactly 100 days, Ethan is finally discharged from the hospital last night!
Needless to say, we're ecstatic. Yet, Aidan remains in the NICU so we're not fully out of the clear yet.

Monday, March 7, 2011

Twins Blog - Mar. 7, 2011 - "Apneas and Bathtime"

Huge advances for Ethan lately. His feeding tube was removed and he's been feeding orally exclusively for the past few days and getting quite good at it. Previously, he would be winded after a meal. Just yesterday, he finished the bottle and not only was he not winded, he seemed to want more!
We also bathed him for the first time in the NICU (Not his first time being bathed; just our first time bathing him). He seemed to like being in the warm water. He certainly didn't like being taken out of the water where it was cold...

Aidan is still on nasal cannula. His progress continues to be a tad behind Ethan. He would still suddenly stop breathing and would require the NICU staff to use the Ambu-bag to revive him. This happens about once a day. We're told not to worry about it much as babies tend to outgrow this tendancy.
Aidan loves being held, seriously. He has always been very fussy inside his incubator when he's awake. He'll be twisting and turning, pulling on anything within reach. But once held, he'll be calm and quiet. Everytime we put him back into the incubator, he'll cry and squirm about again.

Saturday, March 5, 2011

Twins Blog - Mar. 5, 2011 - "Together at last"

Today was the first time since birth that our twin boys got together!

Their beds are situated in separate areas of the NICU (so that the staff doesn't mix them up). I was bottle feeding Ethan at the time when a nurse asked me to leave the area because they had to perform an x-ray on a baby nearby. I asked playfully whether I can take Ethan with me. To my surprise, she said okay. So, I brought Ethan over to Aidan's bedside, where my wife was at, so the brothers can finally meet!

1st shot of Aidan & Ethan together

Wednesday, March 2, 2011

Twins Blog - Mar. 2, 2011 - "Now is the time"

Today is our boys' due date. That is, it's been almost 3 months since birth but their adjusted age is 0 right now.

Here's Aidan:
and Ethan:

Aidan's color doesn't look as well as Ethan's. It takes a while after babies ween off the ventilator for their color to look more "normal". Ethan has had a head-start but Aidan will soon catch up.
For the first time since birth, we've held Aidan for the first time. Another milestone checked! Our fingers are crossed for them to keep progressing!