Sedated Pics

Here are a few pictures from this week, while Andrew has been sedated.

I kept my hand in this one to give some perspective.

He's a little puffy, especially in his face, but definitely kissable.

This one was in the dark, so I had to turn on my Nightshot.

Sorry to Scare You

Early post for those who are worried. Andrew's back on the same amplitude and oxygen that he was at yesterday...amplitude of 28 and 33% oxygen. He's been stable all day, and they aren't unhappy with his progress. They're still going to start the feeds slowly, but everything appears to be in the right place (from his chest and belly x-rays).

It's still unclear exactly what happened last night. We hope that he can stay stable enough to continue with the plan...switch to the conventional ventilator, find a long-term solution for the lung collapses, perform any remaining surgeries (stomach valve and possible lung removal), and go from there.

Another Rough Night

Early in the evening last night, Andrew decided that he wanted to get upset, even though he's still sedated and paralyzed. His heart rate went up, his blood pressure went up, and his oxygen saturation went down into the 80s. It appeared as if perhaps the sedatives were wearing off, giving him the opportunity to feel uncomfortable or get cranky. They raised his dosage by a little bit, and that seemed to be effective. He had also just gotten weaned to an amplitude of 28 on the hi-fi ventilator, perhaps making him work a little harder, so they upped his oxygen for a while until he settled down, then turned it back down to 35%.

A few hours later, he had a similar desaturation, this time falling into the high 70s. He also had a bit of a runny nose, making the doctors worry a bit about infection. He's on an antibiotic, but they're concerned that it might be something unaffected by that particular antibiotic....either a different bacteria, or a viral infection. It also appeared that he may have spit up, and some may have gotten into his lungs (aspirated). They turned his amplitude back up to 30, but he eventually required even more support. By the morning, he was at an amplitude of 45 and oxygen around 66%. I haven't gotten any particularly good answers, but infection, aspiration, and airway issues are all possible concerns. A chest x-ray showed that his right lung was okay, but his left was retaining some fluid. As they want that lung to collapse anyway, they aren't too concerned at the moment.

He's having a better morning, and they're weaning his amplitude back down slowly, but the level of support is still quite high. They're waiting on blood and lung infection results, and they're getting a belly x-ray to make sure his feeding tube is still in the right place. For now, they've stopped his feeds, and will start back up later tonight with a very minimal amount. If none of these results show any obvious issues, then they might be a bit stumped. Unexplained instability is never a happy thing, but calling in for a before-bed checkup and hearing bad news is particularly rough. No one should ever have to experience the feeling that they can't fall asleep because they don't know if their child will survive the night.

More of the Same

I'm half asleep as I write this, so I'll keep it brief. He's down to an amplitude of 28 on the hi-fi ventilator, and will continue to 25. Then they'll talk about switching him to a conventional vent. We haven't had a family conference this week, but we know the doctors have been talking amongst themselves about Andrew this week. They're investigating options for new breathing tubes, including talking to radiology about moving his current tube into his right airway and talking to various companies about split tubes that would inflate one side while blocking the other.

The lights were on this evening, so I took some pictures. I'm far too tired to upload them right now, but I promise I'll get some up tomorrow evening. He's swollen, but it's mostly on his left side, which he's been resting on this week. Due to the blankets around him, it's not really visible except in his face. I hope everyone's having a nice week. More tomorrow.

Just the Numbers

I'm not going to provide any commentary, because I don't like it when Andrew makes me regret a positive report. So for now.....just the facts, ma'am.

He's gotten into the 30s on his oxygen settings, and has continued to have gases within parameters. They are weaning the amplitude on his hi-fi vent, going from the 40s to a current value of 34. With each gas where his pH is over 7.36, they'll lower the amplitude by two. They're trying to get to 26, which they consider minimal settings for a baby of his size. They've restarted the feedings at 17cc per hour, and haven't seen any negative responses to this point.

After flying to Portland this morning at 7am and landing back in San Diego after 10:30pm (and having my luggage lost), it's been a long day. I stopped by the hospital on the way home for a little while....he's still sedated, still on his side, and still cute, even though he's getting a bit swollen from laying in one position.

And now, it's bedtime, so that I can get back up and be on work calls early tomorrow morning.

He Never Fails to Surprise

At 10am this morning, Andrew had a chest x-ray that looked as if he had made progress. His heart was moved over a bit and his lung was more clear. He also had a very good blood gas, continuing the trend from the night before. They were able to wean his ventilator rate to 21 breaths per minute, and his oxygen was as good as its been in a week.

Just a few hours later, his heart rate went up a bit and the nurse changed his diaper. A little later, he was looking a little pale and mottled, and they took a routine blood test. His CO2 was in the 100s, and his pH was far too low (right around 7). They took another chest x-ray and his left lung was back to being hyper-inflated, his heart was back where it was a few days ago, and his right (good) lung had collapsed again. In order to help with his CO2 and re-inflate his right lung, they had to put him back on the high frequency ventilator. It's been almost two months since he was on this machine, and it feels like a huge setback to have him back on it. For a while, he was on 100% oxygen, at high pressures and amplitudes. Fortunately, he responded well to it, and his next gases were much better. They went from the 100s, to 88, to 78, to 67....his pH also moved all the way back up to 7.4, where it's supposed to be. They're back down to 77% oxygen and will continue to wean a bit. They've paused the feedings while all this is going on; hopefully they'll restart tomorrow morning.

I think he scared some people this afternoon, doctors and nurses included, and it's good to have him stable again. Our concern is that with each problem, he takes another step backward....it feels like we've been moving in reverse for the last week and a half. First high ventilator settings, then the sedation and paralysis, then the helium, and now the high-frequency ventilator. We're running out of wiggle room....the first time the hi-fi vent failed to keep him stable, the day after he was born, they put him on ECMO. That's not really a feasible scenario now, so there aren't many good options left if he decides to go south.

Needless to say, it was another tough, emotional day. We're both working all day tomorrow, so I don't expect it to get any easier. Hopefully I'll have better news to report tomorrow night, though I'm tired of Andrew making me look silly by following up a positive post with a major setback. Bad baby!

Is the Plan Working?

Now that all the info is out there, I can get back to updates. Andrew's been doing better the last couple of days. Even though he's still completely sedated, they've been able to wean a bit on the ventilator....he's down from 35 to 23 breaths per minute. That means he's aerating better with a smaller number of breaths. His CO2 levels have also gotten better. They're always going to be higher than they were with an arterial line (55-75 was within parameters), but the most recent draws from his new central line have been in the 60s...two days ago, they were between 80 and 100. His oxygen saturations have been better, his congestion has gone down a bit, and his feeds have continued at 17cc per hour. We don't know if the improvements are due to movement of his heart and/or partial deflation of his left lung, but we're definitely happy to see any positive changes.

It's hard to see him completely asleep and unresponsive like this, especially when he was so vibrant just a week and a half ago. Logically, we recognize that keeping him calm is for the best, allowing him to rest and heal without making himself upset. But it's hard to hear nurses that haven't had him before talk about how much better he's doing, when this entire week has been a huge step backward from the awake, stable, happy, and (relatively) healthy little boy we had two weeks ago.

We had a nice weekend, including going to a wedding, watching a Chargers game with friends, and sleeping in for the first time in about a month. This week will be pretty busy with work, including multiple trips to Orange County and one to Portland, Oregon. It will be difficult to get to the hospital, but I'm determined to visit every day, even though I'll be busy and he's been less-than-exciting company recently.

More details as things develop over the next few days. I don't anticipate much in the way of pictures, as he's facing away from visitors and a little swollen due to the sedation. Maybe I'll do a best-of picture recap sometime this week.

The Long, Technical Version

This post has the potential to become very long and be filled with some pretty technical medical jargon. The doctor didn't sugar-coat anything, nor did she refrain from using some big words. I understood it all and will try to make it consumable for everyone that doesn't live in the NICU, but be warned that it could make your eyes glaze over....if it bores you, go read the short version.

Let's start with the good news. Andrew's now at 17cc per hour on his feeds, creeping closer and closer to the 25cc per hour that would represent "full" feeds. The bag of yellow nutrients (called TPN) that's been giving him nourishment to this point has shrunk, going from a huge bag to a much smaller version. It's hard to tell whether he'll be able to keep this much food down when he's awake and moving around....he tends to clamp down and force food up his tube and/or out his mouth....but we certainly hope he can continue on this path. The other good news is that his kidneys are working really well at this point. While he's been sedated this past week, his CO2 readings haven't been that great, mostly because of his lungs haven't been working quite right. This CO2 would normally result in a low (acidic) pH. However, his kidneys have been compensating nicely. I've written before about his 'base excess,' representing the (alkaline) chemicals/molecules created to offset the acids. His base excess has been very high, which isn't normal in healthy babies but is perfect for him. With high CO2 levels and high bases, his pH has been normal.

Okay, now let's get to the long-term stuff, but first a general discussion about CDH. Kids with congenital diaphragmatic hernias, assuming they don't have worse issues with their heart or other organs, generally have to deal with one of two lung-related issues. The first is aeration, the process of taking oxygen out of the air and distributing it to the body. The second is ventilation, the process of returning CO2 from the body to the lungs and exhaling it. Andrew's problem has almost always been ventilation. In the past, maybe 20 years ago, CO2 levels in new CDH cases could almost directly predict their survival rates. If their CO2 was normal (30s and 40s), there was almost 100% survival. In the high 40s, that rate was still great...90% or above. In the 50s, the survival rate dropped a bit, and the trend goes on from there. I'm not sure what Andrew's initial CO2 levels were, but I would guess they weren't good. Fortunately, they've come up with several new techniques in the last couple of decades. High frequency ventilators and nitric oxide have been extending (and saving) the lives of CDH babies with bad initial presentations.

The reasons for poor ventilation are varied. They include floppy airways, problems with exhalation, and pulmonary hypoplasia (incomplete development). These retention issues are often referred to as "trapping," because the CO2 is prevented from escaping the lungs. Andrew has always done a bit of trapping, but it's gotten a lot worse since his last extubation. Which brings us to his CT and V-Q scans. Even without being able to do the oxygenation portion of the V-Q, they were able to gather some information about the blood flow around his lungs. It won't come as much surprise that his right lung (the big one) is his better lung, and has much more blood flowing to it. The left lung is larger than it was, but doesn't have as much blood....that being said, it's not necessarily a lost cause. They were able to get even more specific...on the left, his lower lobe is better than the upper lobe....on the right, his upper lobe is the best of the three. These are all good things to know for future analysis and decision-making.

The other thing they determined during the CT scan, which might explain the last week, is that his heart still hasn't shifted over to the left as much as they expected it to. On the contrary, it's still heavily impeding the right lung, especially the right pulmonary artery. This artery loops from the heart over the right bronchus, the airway going from his trachea to the right lung. It's squeezing the bronchus a bit, closing down his airway. He's still able to take air in, because of the pressure of the ventilator, but the collapse isn't letting him exhale as well, resulting in air trapping and high CO2 levels. They think this is a major reason why he has had a rough week, and at least part of the reason why he hasn't improved more all along.

So....he has a constricted airway due to a heart that's too far to the right. Ironically, the reason his heart hasn't moved back to the left is because his left lung is now much larger than it was. Initially less than 40% of his left chest cavity, it's now at least 60-70%. More importantly, it's hyper-inflated, meaning that it has too much air. If that lung isn't developed well enough, then it can blow up like a balloon without actually doing anything to aerate the body. Looking at x-rays from after his extubation on Friday, his left lung was very dark, meaning a lot of air and not much developed tissue, and quite large. Personally, I think that this issue was made much more acute last Friday because of a mechanical issue with the ventilator, with the CPAP, or with the re-intubation process. This bulbous lung pushed his heart even more to the right, impeded his right airway, and made his right lung collapse a bit. In that same x-ray, the right lung looked far cloudier than it had been the day before.

Assuming this is the issue, there are a few ways to deal with the large but unhelpful left lung. The most invasive would involve a surgery to remove part of the lung itself. I know it seems counterintuitive to remove lung tissue from a baby with lung issues, but the lung won't help if it's not properly developed. Removing it would help everything shift to the appropriate position and hopefully reverse the issue with the right lung. Obviously this is an extreme course of action that we wouldn't want to take unless absolutely necessary. So now the doctors want to verify that this is actually the issue. To do that, they'd like to make his body think the lung isn't there, by artificially collapsing it a bit. You can't just poke a hole in it, because then all his air would leak from the incision point, so we need a mechanical method for making it collapse but not affecting everything else. The first thing they are trying is the very low-tech solution that I mentioned in "the short version." He's been laying on his left side for a day and a half, and will continue to lay that way for a few more. If positioned correctly, the weight of his heart should make it drop onto the left lung a bit, helping it collapse slightly and improving his condition. A few days should be enough to let us know whether it's working. If this doesn't work, there are other options. They can try inflating only the right lung by moving his breathing tube down into his right bronchus, or they can try a two-pronged tube with an airway on one side and a balloon on the other, blocking his left lung while inflating the right.

So, that's where we are at the moment. We're waiting to see if this technique helps, which at the moment it seems to be....his status has been slowly improving over the last day. If they end up verifying that this is his major issue, then there are a few permanent options:

• Surgery to remove a portion of the left lung
• Surgery to physically move the pulmonary artery out of the way of the right bronchus
• Surgery to reposition his heart in a way that would be long-term
• Prevent the left lung from hyperinflating again

Obviously, we're leaning toward the last one, as we'd really like to avoid another surgery, especially one that would require opening his chest. I would like to think that if we can track down the reason for his last hyperinflation and make sure the same situation doesn't reoccur, as well as employ any non-technical techniques they can come up with, then we can solve the problem without surgery.

As I mentioned, I'm pleased that there's an idea and a plan of action, but we're far from being out of the woods. We'll see how this goes and then talk about the future. We also need to figure out when he can get a Nissen fundoplication, the surgery to protect him against future reflux. They don't want to do it until we have everything else figured out, and then it needs to be carefully timed with recovery, other potential surgeries, and future extubation attempts.

And, as always, there's a chance that more is going on than just an impeded airway. Sometimes in cases such as this, the lung development just doesn't happen as it's supposed to, and the baby ends up outgrowing its lungs. The bigger a baby, the more oxygen is necessary, and there's nothing that can be done if the lungs don't develop at an appropriate pace. In those cases, they often have to let the baby go. A lung transplant may also be an option in that kind of case. I don't want to end on a down note, but these were some of the non-positive topics we discussed as well. It's enough of a possibility that I want everyone to be aware....we are not talking about a 100% chance of success. Fortunately, I think we have enough to focus in the short-term that we don't have to worry about these yet....we haven't exhausted our options and we are still positive about his chances.

The Short, Non-Technical Version

I have a lot to write about, but I feel like I'm about to fall asleep while typing. For now I'll give the short version, then I'll follow up with a longer post tomorrow.

The news wasn't all bad, and wasn't all good. They think they have an idea of what's going on, at least for the short term, and they're trying a few low-tech options that may or may not help. This mostly involves positioning Andrew on his side in such a way that the 'good' lung can expand while the other one collapses a bit. It should take a couple of days to show some improvement...if that happens, we'll know we're on the right track and there might be a solution to his recent problems. If the low-tech solution doesn't work as intended, they can try a few other options. If everything works correctly but he doesn't show any improvement, they'll have to keep thinking. For now, he's stable and comfortable with his sedation.....that will probably continue for the next few days at least.

I'm very relieved by our conversation with the doctor for a few reasons:

1. Though his anatomy is obviously not normal and will require time and patience to improve, the scans didn't reveal anything that was awful and irreversible.
2. I feel like we've been at a really uncertain point during the last week, essentially 'paused' with no plan of attack. Now they at least have some new ideas and a plan of action.
3. We were worried about them jumping to (awful) conclusions, and I'm now confident that they still have hope and ideas and a will to succeed.

We also talked about some of the potential difficulties Andrew could face, including some that would prevent him from having a normal life and others that would prevent him from surviving at all. Though these are very real possibilities, we're not at that point yet and there are still plenty of good possibilities as well.

Appointment

We have a conference with the doctor at 3:30 today. We have no idea what they're going to tell us, our normal social worker is off today, and we feel a bit like we're walking into the lion's den. I don't really feel like we've been communicating well with the NICU staff recently, and I hope they haven't jumped to any conclusions without taking everything into account, including his much-better status last week before extubation.

Recent Pics

Sleeping peacefully

He had just been sedated, and was fighting to stay awake.

You can see his new central line in this picture...the sedation and paralytics were working a little better at this point.

Update, then Pictures

Today was pretty similar to the last few days. Andrew continued to be sedated and paralyzed with medication, though he did manage to open his eyes once this morning. We still haven't heard any results from the tests that were run on Wednesday...the doctor is trying to get a few specialists to all take a look. If they have a chance to review and discuss the labs tomorrow morning, then we'll have a family conference in the afternoon. If not, they'll at least give us a better idea of when they'll have an opportunity to discuss it.

I'm pretty sure the doctors have no idea what's going on, and that none of the tests provided any more clarification. I saw some of Andrew's x-rays today, and they paint quite a curious picture. Last Thursday, before his extubation, everything looked great. On Friday, his left lung was hyper-inflated (it shows up almost black on the x-ray) and his right lung was somewhat cloudy. Over the last week, it appears that they've both gotten a bit better....the left is looking more normal, and the right is looking less cloudy. But he's still requiring a lot of support, and his blood gases haven't been as good as they were a few weeks ago. They're still mixing his oxygen with helium, and he's still at almost 50% oxygen intake.

There is one area in which Andrew's progress has advanced in the last few days...his feedings. Since he's completely calm, he hasn't had any reflux issues, so they've increased his feed volumes to 14cc per hour. They're being pretty conservative about how quickly they advance (about 2 per day), but every step forward is a good one.

Boring

No changes, no test results. He was passed out the whole time we were there, as he has been for two days.

He's still not ventilating as well as he should be, his lungs still look junky on the x-ray, and he still needs far more support than he used to (even a week ago). They wheeled him down to radiology this morning with his ventilator, the nitric oxide infuser, his IV rack, and a tank of helium. Though he was calm the entire time, he wasn't able to tolerate the ventilation portion of the V-Q scan, so they were only able to check his vasculature (arteries and veins). We haven't heard even preliminary results on that or the CT scan, though they expect the radiologist to take a look at some point tomorrow.

I'll try to post some pictures in the next couple of days, as I know these updates have been quite boring.

Quick Update

Andrew is back from his CT and V-Q scans, and was stable throughout the trip. We have to wait for the results....we're not sure how long it will take.

The Same

We're back to the point where no news is good news. Andrew has continued to be stable and calm. He's still on both the paralytic and the sedative, so he hasn't been awake for a while. When we arrived at the hospital today, the unit was closed for a procedure on another baby. A half-hour event turned into an hour and a half, and by the time we got in we had about twenty-five minutes before we got kicked out for shift change. Fortunately, he's pretty boring when he's passed out.

Tomorrow they're going to start doing tests to figure out exactly what's going on with his recent difficulties. First they'll give him a CT scan to get a better picture of his lungs, heart, and other internal organs. Then they'll do something called a V-Q scan in order to determine which portions of his lungs are well-ventilated, and which have good blood flow....hopefully his lungs will have both. After a few days, they'll do a bronchoscopy to see if there's anything wrong with his airway...a small camera will be threaded down his windpipe and look for collapses, or what they call a "floppy airway."

Aside from the planned tests, we don't know a whole lot. More as things develop.

Update for the Worried

Andrew's been asleep and stable most of the day. His morning x-ray looked a little better and he hasn't needed the same number of breathing treatments today, but he's still had lots of congestion and they get secretions out of his lungs/mouth every time they suction him. The doctors haven't written any new orders for today, so we're not sure what the plan is, but he's safe and comfortable with the current sedation.

Unhappy Baby

It's been a really long, hard day for everyone, but mostly for Andrew. Starting last night after my post, he started having a harder time breathing. He was working hard, getting upset, and desaturating himself, all for no apparent reason. He had several breathing treatments, plus some extra sedation to keep him calm. His x-rays were clear and his white blood cell counts were normal, so they didn't suspect infection, but they weren't sure what the problem was.

The issue continued into the morning, when his chest was tight and constricted. During the day shift, they gave him six breathing treatments, far more than normal. He wasn't getting the lung volumes that he normally gets, again for no clear reason....the breathing treatments helped, but weren't solving the problem. He was also getting upset for no reason, waking up crying and dropping his oxygen saturation. Combined with the trouble breathing, his episodes were much worse than normal and it took longer for him to recover each time. There were times when he was on extremely high oxygen, on a high ventilator rate, and still not recovering at a normal pace. I hadn't been that worried about his long-term recovery potential for almost two months.

It got to the point where he would put himself in a precarious situation every time he woke up and got fussy. To prevent him from making his condition worse, they gave him additional sedatives, as well as a paralytic. He's always been pretty tolerant of medication; today was no exception. They switched the choice of sedative and the choice of paralytic, put him on a constant drip, and then raised the dosage. He also got extra methadone and Ativan. Even with all of those on board, he was still waking up every now and then...but he was much more calm and wasn't causing himself problems. To help with the tightness in his chest, they switched from a normal nitrogen/oxygen combination to a helium/oxygen combination. Because helium is a lighter gas, it's easier for him to inhale and exhale...exhalation seemed to be the issue.

We thought all the changes would resolve the issue and keep him stable for a few days, allowing him to relax and recover. However, when we called just a few hours later around 9pm, he was having even more issues. After a particularly bad blood gas, they took a chest x-ray and saw that his lungs were significantly whited out. This means they are being congested, constricted, or otherwise impeded. Again there were no signs of infection, but he was heavily congested and finding it hard to breathe. They gave him a treatment of something called Mucomyst, which loosens secretions and allows the nurse to suction them out of his lungs. This seemed to help, as his follow-up blood gas was much better. He's currently asleep and calm, and responding well to both the ventilation and the sedatives. They'll get another x-ray in the morning to check on his progress.

I spoke with a doctor and she doesn't think there's any immediate concern of an unrecoverable problem. That being said, there are two very different long-term paths that Andrew could potentially travel down. If he recovers well, they'll attempt to get him back to good baseline behavior on the ventilator, wean his sedation and paralysis, wean the ventilator settings, and then start on sprinting and looking toward the next extubation. I don't really want to discuss the other option.

Tired But Happy

Here's a video from a few days ago, of Andrew fighting off sleep. This is what I feel like right now, so I'll make it short tonight.

Andrew had a much better day today, even with some extra procedures. Because his arterial line has been coming out so much, they decided to pursue other options. Another way to draw blood is to take it from a central line, which is a longer catheter usually placed into a vein near the heart. The most common placement is in the subclavian vein, which is just below the neck and above the collar bone. It's often hard to get to, and requires a surgeon to cut open the area and dissect out the appropriate vein. Fortunately, they called doctors from the PICU (pediatric ICU) before they called the surgeons. The PICU doctors are used to dealing with larger kids, and were able to place the line without a need for surgery. Gases from this line aren't quite as accurate, but it's stable and hopefully long-lasting.

Between placing the line and re-taping his tube, they had to sedate him again. The sedation was relatively mild, and he was able to come down on the ventilator settings relatively quickly. He's back down at 12 breaths per minute, and the pressure has come down as well. He also is going up on his feedings....he's at 7cc per hour and will go up 2cc every twelve hours. More importantly, his temperament was much better than Friday and Saturday. He was awake and calm while we were there, managed to sleep peacefully, and didn't cry at all. It's nice to have our happy baby back.

Tired Entry

Andrew had an okay day, mostly recovering from all the excitement of the last couple of days. He managed to lose another arterial line, get (and then have removed) another NG (nose-to-stomach) tube, get an IV and a transfusion, and have his vent tube re-taped. He was sedated for some of the above, so he's spending the rest of the time slowly coming down on his ventilator settings. It'll be a couple days before he's at minimal settings again, and then we can start talking about sprints. He started back up on small feedings today, and perhaps they'll be able to increase.

In general, he (and I) are pretty tired, so that's it for now.

Too Stressful For Now

Andrew was reintubated around 8pm tonight. New nurse, new doctor, and Andrew apparently looked like he was having to work even harder to breathe. The word they used was "gasping." After getting the tube back, his subsequent gas was okay, so I don't think he was necessarily in a bad place, ventilation-wise, but he was definitely tired out from the stressful day. Being upset every waking moment has to take its toll, and it will be vital that next time we make him as comfortable as possible.

I think most of that can be accomplished by having a better ventilation strategy, making sure all the parts fit him so that he's neither leaking air nor uncomfortable, and preparing him a little better for what he's going to face. If he's going to wear a headband, we should start putting him in hats....if they think being on his tummy will help, we need to flip him over and get him used to that now....if they want to crank up the bed so he's sitting up (like they did today), then extubation day shouldn't be the first time he ever experiences that.

They sedated him to put the tube back in, and so he's back to full settings on the ventilator. He's in absolutely no danger at all...quite the opposite, as his pH is above adult normal and his CO2 is very low for him (48). They'll let him rest tonight, then start turning the settings back down with his next gas in the morning. He should be back at minimal settings pretty quickly, depending on which doctor is writing the orders. After that, we'll come up with a new sprinting strategy, which will probably involve longer (and more frequent) periods without the vent giving him any breaths. I'm going to focus on getting him used to whatever he's going to experience next time and maximizing his comfort level. I really believe that today would have gone much differently had he been less upset...and the way to relieve his anxiety is to change as little as possible. When it comes time for his next extubation, the only thing that should change is where the tube is located (from down his throat to across his nose)...everything else should be practiced ahead of time. They might also have to order a different part, research different tubing, or use a different ventilator....all so that they can have a more effective seal, without an air leak or ill-fitting nasal prongs.

Of course this is a short-term disappointment, as we had hoped he'd stay off for good this time. However, we learn more every time they try, and I think he proved that he can ventilate well on his own, and even recover from being upset...it was just the constant anxiety that ended up being overwhelming for him. Now that he's back on the vent, this weekend will be a lot less stressful, so hopefully D can enjoy her sister's wedding without worrying about Andrew breathing on his own. Next time we'll try to schedule the whole process a little better, so that his primary nurses are around and we're available the entire time. I'm not sure how his next try off the vent will fit in with his next surgery (the Nissen fundoplication....one-way stomach valve), but we'll make sure that's all planned ahead of time.

Thanks for your support today. Have a nice weekend with no worries, and we'll get back to the grind next week.