Lullaby

Here's a new video for your viewing pleasure. Though seeing him alert and awake was great at the time, I should warn you that the video may be a little sad, mostly because of the music. If it makes you feel any better, he wasn't in any pain....just curious and looking around.

Morning Post

I feel like the last few posts I've written have been less than happy, and I don't want people to get too concerned. This most recent strategy of sedation and recovery will probably work pretty well, and has been working so far. This morning the nurse said he had the best blood gas she's seen in the last three days (while she's been watching him). We have a "family conference" with the doctors later today, try to get a more long-term plan of attack, and clear up any concerns we have.

Alive Awake Alert Enthusiastic

Here's looking at you!

The various tapes and IV's have done a number on his skin, but you can see how long his fingers are.

Another shot of Andrew looking around. The blanket over his head is to shield his eyes from the lights.

High Maintenence Baby

After the little fit mentioned below, we were discussing with the nurses how fussy he is, and that he gets upset by the littlest things. That generated this quote from the respiratory therapist: "I know I wouldn't want to take this baby home."

Nice, huh? She was joking, but it doesn't bode well for our sanity when he comes home.

Taking It Slow

We went to the hospital twice today. The first time, he was stable on the hi-fi vent, and his numbers were starting to come back down a bit. It was an obvious setback from the normal vent, and they're still not sure why his CO2 was out of control earlier, but he was stable and coming down on everything. He was also very awake and the most alert we've ever seen him (for about ten minutes, until they sedated him). The nurses have been telling us how alert and responsive he is, but we never seem to be there at the right time. It was great to see him looking around, though it's obviously hard to watch him lay there, frustrated by the tube in his throat and his inability to move much. I'll post pictures from this visit tomorrow, perhaps with a video as well.

The second time we stopped by, after dinner, he was about the same. Still on the hi-fi, still on pretty high values, but they had brought his oxygen percentage down a bit since earlier in the day. While we were there, he got a bit cranky for no apparent reason. He gets touched off by some small things, like a wet diaper, and it sets him off so much that he throws off all his numbers. This was a particularly bad one, as he started to "desat," their abbreviated term for desaturating...dropping his blood oxygen saturation. I tried to calm him down, which worked temporarily, but then he went even more nutso. He flailed his arms and legs, tried to cry (creating lots of bubbles but no sound), and turned all red. His CO2 spiked, alarms started going off all over the place, and they quickly turned up his oxygen and gave him some morphine and paralytic. They wouldn't even tell us the results of the blood gas they got during this episode (it was BAD).

After he stabilized (passed out from the drugs), his CO2 started going back down and his saturation started going back up. We had a talk with the doctor, and she suggested slowing down the pace of his weaning. The strategy from the Doctor of the Day is to pause everything for a couple of days. During this time they'll keep him pretty sedated, keep him on the hi-fi vent, and try to get his numbers really good and stable before starting to wean again. She suggested that he's never had the opportunity to become comfortable before challenging him to improve yet again. With him being so fragile and getting upset so easily, this will inevitably provoke setbacks. We'll see if this strategy survives tomorrow's Doctor of the Day or gets changed yet again....but after seeing him get so upset, I think I'd welcome the sedation so that he doesn't have to go through that again.

Can We Go Back To Within Parameters?

Apparently I should have been happy with Within Parameters. This morning his numbers were outside parameters with no noticeable indication of why....he hadn't been through anything stressful and his CO2 was up in the 90's. Unfortunately, that meant they had to put him back on the high frequency ventilator. The doctor is going to call me later to discuss possible reasons for this, but they think it may be an infection. They've taken blood cultures and sent them to the lab, they re-started an antibiotic drip (they stopped several days ago), and they'll see what the results say. If it's not an infection, then we'll discuss the other possibilities...I'm not sure what those would be.

We can't go down there right now because they're doing a procedure in the NICU (not on Andrew), but we'll be down later this afternoon to see how he's doing. He's already far more stable after the ventilator switch...his CO2 is back down at 70, which isn't great, but is within parameters. For now, that's music to my ears.

Hat Pictures

I've been stalling on posting new pictures, because the edema (fluid) on his head has made Andrew look a little strange recently. First he looked like a monkey (his head was rectangular), then an alien (his face was normal but his head was bulbous, and finally like John Goodman, as the fluid moved into his face.

All the time on his back has now turned him into a conehead, but at least they gave him a hat to wear....so now I can post these pictures.

Nice pic of his face

An overhead view

Going with the Jewish look. The red spot on his back is already getting better.

Birthday Research

I did a little research into Andrew's birthday last night. Here's what I came up with....

Andrew shares his birthday with quite a few famous people. At the top of the list are Jim Belushi, Helen Hunt, Courteney Cox, Leah Remini, and Doogie Howser....I mean, Neil Patrick Harris. Mario Cuomo, Waylon Jennings and Wade Boggs are (sadly) a little less well-known. And rounding out the "who cares" portion of the list are Jake Busey (Gary's son...the creepy guy from Contact), Haley Scarnato (the cute no-talent from American Idol), Cara Zavaleta (from Road Rules), and Elizabeth Reaser (Jane Doe from the last season of Grey's Anatomy).

Andrew is a Gemini, for those that care, and his birthstone is pearl (or moonstone, or alexandrite). It's not exactly a manly birthstone, but I don't expect him to be wearing a lot of non-medically-necessary jewelry, either. June's flower is the rose...apparently it's not a great month for guys.

Anyone else have any info about June 15? Did someone keep a copy of the newspaper? My mind was elsewhere that day, but I'd like to have something to keep as a souvenir.

"Within Parameters"

If we never heard the phrase "within parameters" again, we would be quite happy. The parameters in question are the ranges of acceptable values for his test results. For example, his CO2 saturation is within parameters between 50 and 70. Unfortunately, they don't use this phrase when his numbers are good.....if his CO2 were 53, that would be great and they would be able to turn the ventilator down. Instead, they say it when they don't have any good news to report (no weaning), but they didn't have to turn anything up, either. A saturation of 67 would be within parameters. What it means is that his numbers aren't great, they'd be happier if they were lower, and he's not currently making any progress.

We hear that he's within parameters quite a bit, often right after recovering from a stressful situation. He was within parameters earlier this evening, after being weaned down to 40% oxygen (from a high of 45). When I called at 10pm, they were about to take another blood gas (test), and I expect that he will again be within parameters. Apparently he didn't take too kindly to them flipping him to his back again, or suctioning his mouth and lungs (a standard procedure), or giving him a breathing treatment. How sad is it that you can't flip our baby over without him freaking out? Anyway....they were giving him a bit of time to recover before they take a sample, but I'm sure it won't be enough time to get him to weaning levels.

I suppose "within parameters" is better than "crashing," "going back on the hi-fi,"desaturating," or any of the other awful things they could be saying. But in a situation where a little progress is everything, we always hope for better news.

Poll Results

It looks like Drew is definitely the nickname of choice, though it's currently dead even with Andrew. I've been sticking mostly with Andrew, if only to keep from choosing anything that will stick before we get an idea of his personality. I'm also fond of "Dude" and "Baby," though I'm trying to stay away from "Buddy," as it somehow seems more condescending.

Any ideas for future poll questions?

Today's Update

The Good:

• Andrew got his chest tube out today, which means he has one more bandage but one less tube running into him.
• They've weaned him entirely off the nitric oxide (NO). This is a HUGE step, almost as important as getting him off the high frequency ventilator. We were warned last week that he may need to go home with nitric oxide, as the difference between 1% and 0% is apparently a large one. They haven't moved the NO infuser away from his bedside yet, so he could still go back on....but he looks OK on a trial separation.
• They moved him back on to his tummy, and though it took a bit of readjustment, it seems like he's recovering a little more quickly from issues.
• At times, he's been breathing pretty well above the vent.
  

The Less Good:

• Because the NO is so important, they had to turn everything else way up to compensate for a while. His oxygen saturation started dropping within a couple of minutes of turning off the nitric oxide, and they hit the button for 100% oxygen to keep him stable. After a few minutes, they brought it back to 45%. Since then (around 2pm today), they brought it down further, to 40%. His breaths per minute are also up to 36.
• His last feeding attempts haven't worked that well, so they're on pause for a while. His last X-ray showed some air in his upper digestive system and the residuals they've gotten have had some bile in them, so I think they'll wait until that settles down. On the positive side of the same issue, he's been going to the bathroom, so they know his lower bowels are working fine.

Again, the numbers don't sound great, but I believe he is healthier right now than he was at this time last night. The chest tube and the nitric oxide are two big, noticeable changes, both for the better.

Quick Update

Quick update from my phone...having a nice 3rd of July party.

Andrew's having a really good day so far. He's been brought down to 1 on his nitric oxide, from 2 earlier today and 5 yesterday. He's at 29 percent oxygen, and his breaths per minute (from the vent) are at 31. While we were there, he was also breathing "above the vent," getting up to about 60 breaths per minute at times. A good sign, though it's still somewhat intermittent.

They took out his catheter, so they're having to change his diaper more often. D got to do it while we were there today, for the first time. They also clamped his chest tube, anticipating a possible removal tomorrow.

I may post an update if we stop by tonight. If not, then you'll have to wait until tomorrow. Happy fourth!!!

Ahhhh.....Freak Out!

Ten minutes before we left for the play this evening, Andrew decided to have a little fit. This is the second time I've seen him do it, and it's pretty disconcerting. I've mentioned before that he doesn't really have any oxygen reserves, so any stress causes his stats to drop pretty quickly. All he was doing was kicking his legs, swinging his arms a little, and fussing over the ventilator tube (like he was trying to cry). That produced a 10-point spike in his CO2 levels and a quick desaturation of his blood oxygen, all within a minute or two.

The first time this happened, I had no idea what to do, and basically made soothing noises until the nurse could come over and sedate him. Today, however, a really nice respiratory therapist came over, grabbed his feet in one hand and his head in the other, and held him steady. By restricting the motion of his legs, it made him feel more comfortable and less exposed....just as normal babies like to be 'swaddled,' he needs the restriction in order to relax. After calming him a bit, she let me take over, and it worked amazingly well. After less than a minute of holding him like that, he completely relaxed and his stats started going the right way. It was a really great lesson.

On a non-Andrew note, Avenue Q was quite entertaining. It was definitely unconventional and managed to combine serious emotional subjects with swearing puppets. The performances of the touring cast (many of whom performed on Broadway and during the Las Vegas run at the Wynn) were fantastic, and I really found myself feeling for the characters....puppet and human alike. I found out that it won the Tony for Best Musical by beating out Wicked....I can't say I agree with that choice, but it was amusing in its own right.

Still on the Conventional Ventilator

He made it through today on the conventional ventilator. Now that he's on a different machine and may stay there for a while, the relevant numbers have also changed. We still want his blood oxygen saturation to be high, and his CO2 saturation to be low....those will determine what they do with the following ventilator settings. He's currently at 34 breaths per minute (bpm), which they have weaned down from a high of 40 just after the change this morning. His air is infused with 34% oxygen and 5% nitric oxide (down from 10% this morning). Before they would remove the ventilator completely, they would want his bpm from the machine at around 10, and his bpm (measured) at 30-40, meaning that the machine is only doing a tiny bit of the work and his body is breathing on its own in addition. The air we breathe contains 21% oxygen and 0% nitric oxide, so those would be the target values as well.

On the conventional vent, they can provide breathing treatments, which consist of an inhaled medicine similar to that in an asthmatic's inhaler. This medicine dilates the bronchial tubes in his lungs, allowing him to breathe more fully, and should be MUCH more effective now than when done on a high-frequency ventilator. He's getting a few more (small) doses of steroids, which should help with lung development and inflammation. Finally, they're continuing with Lasix to try and remove some fluid from his lungs (and body)....keeping him a little more awake and letting him wriggle occasionally may also help prevent fluid retention.

Let's Try This Again...

It looks like I picked a bad poll provider. Until that site comes back up, let's try this one:

A Quick Poll

I thought I'd take this opportunity to make the blog a bit more interactive. While you're all sitting there waiting for me to write an update, you can vote in this poll.




Update: Don't be concerned if it appears that your vote hasn't been counted. It has, but the results are only updated every hour....so check back later to see the current tabulation.

Attempting to have fun

It seems a little disrespectful to Andrew to have too much fun while he's in the NICU, but I know that it's important for us to keep our spirits up in any way we can. Tonight we're headed downtown to see Avenue Q, which won a Tony for Best Musical in 2004. I don't know a whole lot about the plot, but I do know that it involves some very irreverent (and foul-mouthed) puppets. A good friend got free tickets and was nice enough to invite us.

We'll be going down to the hospital after rounds today (3:30) and staying there until we head to dinner and the show. Our days now have to be planned in three hour increments (you can probably guess why), so we've been scheduling our time carefully today. We may have some awkward moments in the car before and after the show (and I already know D will be miffed that I wrote this).

Trying New Things

This morning, they flipped him back over onto his back, which predictably threw his numbers off a bit. However, they also decided to try him on a conventional ventilator. He has been more alert today, and they thought this would give him the chance to breathe for himself a bit without fighting the work of the machines. While the hi-frequency ventilator tries to keep his lungs perpetually open, then uses the "shaking" to help with gas exchange, a conventional ventilator breathes WITH him, and isn't negatively impacted by him trying to breathe on his own.

While this is very much a trial run, and I will not be surprised at all if he needs to switch back to the hi-fi, things are going well so far. They put him on at about 11:15am and got a blood gas at 11:45. They're trying to keep his CO2 between 50 and 70....the first gas was high (82), so they turned up the breathing rate from 30 breaths per minute to 40...which is still well within the normal range for an infant. The nurse also said they were optimistic about this vent. I just called again and his latest CO2 was at 65, which is within his expected parameters.

Again, I won't be surprised if he has to go back to the other ventilator. That said, just being stable for a while on this vent is a huge leap forward, and bodes well for his recovery process. I'm being very careful about getting my hopes up, but this is definitely good news.

Not So Fast....

Andrew had an interesting night, shortly after I made my last post. They had flipped him at midnight, putting him on his stomach for a while in order to relieve some pressure on his lungs, ease the fluid gathering on the back of his head, and give him a bit of a break from the standard on-his-back position. Apparently something about the move didn't agree with him....either the stress of moving him or something about the new position. His 5am blood gases came back with a high CO2 content, and they compensated by turning his ventilator way up (to 45, from 30). That stabilized him pretty quickly and his following gases were fine, but it was definitely a setback.

Once they turned the vent up so high, they spent the rest of the day coming back down. All his gases looked good all day, and they currently have him back down to 36. In addition, his inhaled oxygen percentage has been brought down to 30% (from 36%), which is the lowest it's ever been. They're going to leave him on his tummy for at least tonight, and then reevaluate in the morning. It seems like a lot of the problem arises from when he gets too alert, because he starts to breathe normally and work against the ventilator. As soon as they move him to the standard ventilator, he'll be able to work WITH it, but for now it's best that they keep him relatively sedated. With his lungs in such a fragile state, he doesn't have any oxygen reserves, so any stress causes his numbers to drop pretty quickly.

After talking to his nurse on the phone this morning, I was pretty discouraged. But after going in, talking to the doctor, the respiratory therapist, and the nurse....and after seeing what was happening with his numbers for myself....I feel much more comfortable that today was just a minor step back. I need to stop paying so much attention to the numbers (though I just spent the entire post giving you stats), and focus on overall progress. Even considering the up-and-down nature of the last 24 hours, I'm convinced that he is healthier right now than he was before they flipped him a day ago. Every day further from the surgery is a day closer to a full recovery.

Doing Well (At the Moment)

Just a quick one.....his nurse is on her lunch break (at 2:30am), but I was able to get a very brief update from the nurse that's covering for her. His hi-fi amplitude is down to 30 and his oxygen percentage is down to 36, both pretty good improvements. His nitric oxide went back up to 10 this morning (from 2.5), but I suspect that may come back down in the next few days. I don't know how he's done on his most recent feedings....he did well on Friday but decided to be difficult on Saturday.

I fully expect all these numbers to flip-flop by the time we get down there tomorrow, but I'm happy with them for now......time for bed.