Quick One

We just got the news that Andrew had his eyes open and was looking around....we're headed in shortly to see if we can catch him awake.

Delayed a Bit

I'm guessing people might be anxious for an update, so I'll post this earlier than normal. The day didn't go quite as expected, because the unit was quite busy with other new and sick babies. The doctors didn't get around to ordering the changes in Andrew's medication until 6pm, so he spent the entire day exactly like he's spent the last month...asleep and paralyzed.

At 6, they finally turned off the paralytic. They left the sedation going, which kept him asleep, but now he can move. He's been moving slightly....mostly his fingers. We're not sure what the plan is for lessening the sedation or letting him wake up entirely. We'll definitely try to be there if they tell us before it happens.

The next few days might be volatile, as we don't know how he's going to react to waking up, so we'll also be calling in to check on him more often. I don't know that I'll be posting any more frequently, since things likely won't change very quickly, but I'll make sure to write something when we see how he's going to behave.

That's it for now. More tomorrow, then more when he's awake and alert.

Liking the Tummy

Andrew's doing well so far in his new position. According to the x-rays, his left lung has inflated more, but isn't yet over-inflated. The right lung also seems to still be an appropriate size, and his numbers (volume, CO2, and oxygen saturation) have all been good. Now that his left lung is nearing normal size, it's time for the second part of the plan. They're going to try and let him wake up tomorrow (Saturday) morning. They'll definitely do it slowly and keep a close eye on him, as he's likely to be groggy and maybe even grumpy after being sedated for so long. They'll reduce the paralytic first, so he'll be able to move in his sleep, then start turning back the sedation until he wakes up.

Tomorrow is a relatively important day for him, as the next steps will depend on how he reacts to waking up. There are really three options that I can think of:

1. He wakes up and eventually calms down and does well (both emotionally and physically), and his lung stays a normal size. He's definitely allowed to be a bit grumpy, but can't stay that way long-term. In this case, they would start to wean the ventilator back to minimal settings over the next few days.
   
2. He wakes up and the additional force of breathing on his own causes the left lung to hyper-inflate. In this case, they would almost definitely sedate him again, then probably move him back onto his left side until the lung collapsed again. Then they'd try to schedule a lobectomy to remove the upper portion of his left lung.
3. He wakes up and simply isn't able to be awake and relaxed at all. If his lungs cause problems in a way that isn't expected, if the right lung collapses as soon as he wakes up, or if that constricted bronchus generates significant difficulty for him, he will likely be behaviorally difficult and medically unstable. This would include any bad diagnosis other than a hyper-inflated left lung, for which they have a solution....if it's a problem without a solution, then we'll be very close to running out of options entirely. He needs to be able to be awake and stable...keeping him sedated and paralyzed long-term isn't really an option.

There are no indications that a problem will necessarily arise when he wakes, though I don't think anyone would be surprised if his left lung over-inflates again. In options 1 or 2 above, there is a clear method of treatment and expectation of improvement (even with the surgery). He'll show us tomorrow how he's grown or changed during the last several weeks of sedation....let's hope it's for the better.

A New Position!

Here's the most obvious evidence of the new plan...a new position for Andrew.

The swelling in his face will start to subside when they let him wake up.

Mostly covered, but still cute.

Thursday Wrap-Up

Sorry for the uninformative post last night. I don't really like to write anything unless I'm awake and alert enough to give a relatively good summary of the days events, but there's also some pressure to get something posted every night....I certainly don't want to make anyone worry unnecessarily.

Andrew's doing pretty well with the new plan. They moved him onto his stomach and are letting the lung slowly reinflate. We saw an x-ray from yesterday morning and it had already expanded a bit. One indicator of how well his lungs are working is the total volume of air that he inhales and exhales with each breath...low volumes mean congestion or "air trapping," which can cause hyperinflation. His volumes have been good and his CO2 levels have been better than the last couple of weeks. They turned down his breathing rate slightly (to 30 from 32 breaths per minute) and will be able to come down further with additional positive test results. They'll also be getting x-rays to follow the progress of the left lung.

One of the other issues that cropped up on Wednesday was a blood test that showed some signs of infection. He hasn't really had any infections that have gotten to his blood before, so they put him back on antibiotics and took various cultures (mucus, blood, urine, etc.) to see where the infection was developing. So far the only positive culture has been in his urine, so he might have a little urinary tract infection. Hopefully the antibiotics will nip it in the bud.

The doctors had another discussion about additional procedures/techniques that may solve the problem with his bronchus, and nobody had any new ideas. That means we're moving forward with the current plan, and we'll see how he does with it. If his lung inflates (fully, but not too much) in the next few days, they'll most likely let him wake up and see if he can continue that stability.

Begging Off

Forgive me again for the delay, but I'll get to posting tomorrow morning. Andrew's doing fine and is behaving very well on his stomach.

CAT Scan:The Results Show

Yesterday I described the ideal CT results. Today we got those results, and they were somewhat less than ideal. On the good side, all the major anatomical moves happened as expected....his left lung has collapsed, his heart has moved toward the midline, and his right lung has inflated well. However, his right bronchus is still being compressed by the pulmonary artery. We took a look at the scan results with a doctor, and the compression is quite obvious.

So.....our options are dwindling a bit. Some of the procedures that have been considered and discarded include inserting a stent (rigid tube) into the airway and/or physically lifting and moving the heart by attaching it to the chest wall. There are significant negatives to the stent approach, and Andrew's anatomy won't accommodate physical movement of the artery.

The current state of the bronchus isn't necessarily an awful thing. Obviously it's not as we had hoped, but his right lung is doing well recently, even with the compression. Moving forward, that bronchus could grow with his lungs and body, and provide enough airway to allow a normal breathing pattern. On the other hand, the pulmonary artery could grow even larger, compressing the bronchus entirely and cutting off air to his one good lung. People can live with compressed bronchi, but he has the unfortunate situation of not having a "good" lung to back it up.

Speaking of his "bad" lung, the purpose of the anticipated lobectomy was twofold. First, to relieve the compression on his right bronchus, and second, to allow his heart to shift and his right lung to inflate appropriately. Since the compression hasn't been solved by this pseudo-lobectomy (keeping him on his side for three weeks), they want to be especially careful before deciding to remove any portion of that left lung....the benefit is no longer quite as obvious. So, in order to confirm 1) that the left lung isn't doing anything to help, and 2) that it will always cause problems if given the opportunity, they have come up with a new short-term plan of action.

They are going to move Andrew off of his side and allow his left lung to slowly reinflate. They've decided that the best position in which to do this gently is with him on his stomach, so they've rolled him over on his belly. Over the next couple days-to-weeks, his lung should slowly recover from being compressed. During this portion, they'll keep him sedated and paralyzed for maximum breathing consistency. Once the lung is reinflated, then they'll allow him to start waking up again, because we also need to confirm that it can stay normal while he's awake. Assuming it does, then we would be back to where we were a month ago...on low ventilator settings and pushing toward another try at extubation. However, if the left lung hyperinflates at any point in the process...while sedated, while awake, or while trying to extubate...they'll have confirmation that the lung is continuing to cause problems, and they'll most likely remove the upper lobe.

At this point, Andrew has definitely run an uncommon course and has proven himself to have a unique anatomy and relatively rare combination of issues. When we first learned about CDH and the lung development issues that are associated with it, we certainly wouldn't have predicted we'd be discussing removing his stunted lung because it was too large. At this point, the doctors are running out of good options for obvious solutions. There are still a few clear paths toward possible recovery, including the new plan described above. Beyond that, the doctors and surgeons are brainstorming for additional ideas, but there aren't a whole lot of stones left unturned.

We'll see how the next couple of weeks go....we're certainly hoping he responds well to the new position so that they can remove the sedation and let him wake up again...we miss him.

More Later

I fell asleep halfway through tonight's post, and I'd rather go to bed than finish it right now. I'll finish it and post it in the morning, but I wanted to get something out there. Andrew's stable and comfortable now (and has been for days)....talk to you in a few hours.

A New CAT

Well, the plan changed a bit today. Instead of doing a bronchoscopy, the doctors and surgeons got together and decided they'd rather have a new CAT scan. This scan should provide a clear view of his anatomy and give an indication of whether the artery-constricting-a-bronchus issue is still a problem. Ideally, the CT will show a collapsed left lung, a heart shifted toward the midline, a well-inflated right lung, and a pulmonary artery that is nowhere near his perfectly round bronchus. I won't get into all the other possibilities, because none of them are particularly expected, but other findings may change their course of action. Assuming they find everything in its appropriate position, they'll schedule the surgery for later this week or next week.

They managed to schedule the CT for this afternoon (around 5pm). They had to wheel him down the hall to the CT machine, perform the test, and then wheel him back with all of his machines in tow. He behaved well throughout the process, and continues to be stable and have good numbers. In addition, he got a room upgrade when he returned the unit....he's back in the big room that he had several weeks ago. Last time he was only there for two days before being moved out, so we won't get our hopes up, but it's nice to be able to spread out a bit. There's plenty of room for all his machinery, plus space on both sides of his bed. We've been staring at the back of his head for a few weeks (the machines took up the other side of the bed), so now we have better viewing angles.

Even though the CT was done today, the results won't be back right away....they have to be reviewed by a radiologist and then given to the doctors. Last time it took two days, though we hope to hear back sooner than that. More info as we get it....

Long Day

I left the house at 5:15 this morning and got back home at 9:30 tonight. In between, I drove to LA, worked for 7-something hours, drove back, and then went to the hospital. To give you an idea of how tired I am, I'm going to bed as soon as I finish writing this, around 11pm.

There's not much change to report at the hospital. Andrew's still doing well, though he started to move a bit today. They had to increase his paralytic dosage a bit, but he was still moving while we were there. They may have to increase it again in the next few days.

The surgeons are trying to schedule the procedure on his lung, but first they want to get a bronchoscopy. This involves inserting a small camera down his airway, taking a look at the trachea/bronchus walls on the way down. We're not sure why they need it, but this test isn't difficult and should provide some additional information. It would let them know if he had a floppy airway, another constriction, a weak point in the wall, any scar tissue, etc. I don't think they're expecting any of these to be the case, but we're certainly not complaining about any extra testing before starting an irreversible surgery.

They'll try to do the bronchoscopy later this week....we'll probably know for sure tomorrow. After they finish the bronchoscopy, they'll try to schedule the other surgery.

Fight On

Our internet access is back up, so I don't have to post this one from my BlackBerry, as I did last night. Unfortunately, I still don't have much in the way of news to report.

Andrew has been behaving well...there haven't been any major changes on his settings. He's stable enough that they're going twelve hours between blood gas tests, which is up from 4-6 hours. His feeds are staying at a pretty low volume, partly because he doesn't seem to be moving much through his system. That could be partly due to the sedation/paralysis, and we certainly hope it's not another digestive blockage. We'll see how he progresses over the next couple of days.

The surgeon came by and took a look at him this morning. We're not sure what she was looking for or whether anything was decided...the nurse didn't know and we didn't talk to a doctor or social worker today. This surgeon is not the one who did his previous surgeries, because the lung resection requires a different specialty. She's a cardiothoracic (heart and other chest organs) surgeon, and will be assisted by another CT surgeon. Since they're focusing entirely on the lung and ignoring the stomach for now, it should be a relatively straightforward procedure...not short or easy, but straightforward. From what we've heard, they'll have to dissect out the portion of the lung that is to be removed without affecting the blood flow in the arteries going past it. The lower lobe of the lung will be left intact, so they want to make sure it has all the blood it needs. The second surgeon will be there mainly to assist and to deal with any issues that crop up (bleeding, etc).

We drove up to LA on Saturday afternoon for a USC football game. We were somewhat hesitant to leave home, because of the long time commitment, the distance from SD, the notoriously bad cellular coverage at the Coliseum, the every-three-hours logistical considerations, and a boatload of work that I have to finish by Monday. Despite the many reasons to skip it, I'm very happy we went. We had a great time with D's brother and girlfriend, really enjoyed the game, and managed to get there and back without any major incidents, either on the road or at the hospital. It was nice to get away, if even for the afternoon.

The Same

Our internet is down, and has been since this morning. This makes it hard to blog, and especially hard to work...let's hope it's better by tomorrow.

For now, I'll keep it simple. Andrew was pretty much the same today. He was looking good when we saw him this morning, and he's had an up-and-down day. In the end he's back to where he was yesterday, so we've essentially broken even.

No word on when the surgery will be. Hope everyone's having a nice weekend.

Not-So-Cute Pictures

Andrew's all propped up appropriately, wearing new socks and a new blanket.

A smile for the camera.

His face and head are probably the most swollen.

No, he hasn't developed a cleft palate. His tube pulls up on his lip a bit, which is okay since he doesn't have teeth. Under the tape, there's moleskin to help protect his lip from breaking down.

A Bit More Info

I'm going to try and get some sleep tonight, so perhaps if I post now I can crash on the couch without guilt. Andrew had a pretty good day today. His numbers were up and down, but relatively stable and mostly good.

While we didn't have a full family conference, we did speak briefly with the doctor. They still don't have a date for his surgery, but they know which surgeons will be doing it. They're going to focus on the lung first, then do the stomach valve surgery later...they don't want to open two incisions at once. They'll be removing only the upper lobe, and trying to leave the lower lobe (and associated blood vessels) completely intact.

Because they'll have to flip him over for the surgery (left side up), the doctors were concerned that his left lung could once again over-inflate and cause the right lung to collapse. They considered putting him back on ECMO before the surgery, so that they'd have a way to oxygenate him if his good lung collapsed. Fortunately, speaking with the surgeons, they have an alternative; they'll thread another tube down next to the current one, into the left bronchus (airway to the left lung), and then inflate a small balloon on the end. This will prevent the lung from hyperinflating. It's still possible that he could need ECMO again at some point, but that would only be if he had trouble self-oxygenating after the surgery. As long as the right lung works as they expect it to, that should be left as a just-in-case backup.

Once the surgery is complete, then they'll turn down the sedation and let Andrew wake up again. Until then, they're worried that he would hyperinflate his lung if he woke up. Being awake and letting him move will help with his swelling, promote good circulation, and allow him to be extra-cute again. As the "before," I'll post a couple of shots from this week. We'll ask more questions and get some more surgery information as soon as we have a meeting....they're trying to schedule some time with both the neonatalogist and the surgeon.

I'm not sure what our schedule's going to be like this weekend, so don't count on timely posts.

Sorry I'm Late

Oops...I just realized I forgot to post last night. I was caught up in lots of work and half-asleep by the time I stumbled to bed, only to get up three hours later for a conference call.

Andrew's still on the conventional ventilator and he's been weaned a bit on his breathing rate. He continues to have little snits that require some intervention (turning up his oxygen, temporarily upping his rate, or "bagging" him), but he's recovering pretty well from them. We were able to help bathe him yesterday, using a washcloth and a warm bowl of water. He tolerated it well and it was nice to 1) have him clean, and 2) help out with a task like that. He's been getting 'bathed' every few days, but we haven't been involved to this degree before, especially not while he's been sedated.

He spit up again yesterday morning, causing them to lower his feeding volumes again. They're going to hold him steady at 6cc per hour until after his surgery. While they could probably increase it again safely, at least a bit, they want to be conservative while he's sedated and could possibly breathe some of it in....when he's awake, it's much easier for him to cough out, and poses less of a risk.

We didn't meet with the doctor as planned, because they haven't had a chance to talk to the surgeons yet. Once they figure out when his surgery will be, we'll have a longer meeting to talk about the details.

Back to Basics

Andrew was switched back to the conventional ventilator today. They started him off at standard full-sedation settings, so it's giving him 30 breaths per minute. They'll slowly wean as he has good gases, though they can only wean so far while he's sedated. Getting him off the hi-fi hopefully will make it less critical that he's completely paralyzed, as breathing above the vent is much more disruptive to the hi-fi. They still won't let him wake up completely, but perhaps they won't have to increase his dosage as much as they did last week.

They're continuing to increase his feeds, and are now going up every six hours, instead of every twelve hours. He's at 11cc per hour right now....advancing at the same rate, he could be at full feeds in three days.

We have a meeting with the doctor tomorrow, where we'll hopefully get more details, but we got a quick update today. It appears that they're leaning strongly toward removal of a portion of his left lung...how much is unclear. They'd also like to do the stomach valve surgery (Nissen fundoplication) at the same time. They're talking to the surgeons to see who's available for the surgery, which could happen as early as next week.

Thank You

I would like to once again thank everyone for your support and generosity. At this point, we've received cards, emails, blog comments, voicemails, flowers, fruit, gas cards, restaurant gift certificates, cookies, brownies, frozen food, baby socks, teddy bears, hand-knitted hats, freshly-jarred conserve, cash, frames, blankets, toys, and other assorted baby and/or consolatory gifts. Multiple donations have been made in honor of my Yia-Yia and Andrew to Rady Children's Hospital and Cherubs, a CDH support and research group. We greatly appreciate each and every one of these generous gifts and until we get around to writing thank you cards, please know that we have received and are very grateful for them all. Your originality, kindness, and love know no bounds, and we are lucky to have you.

I'm sorry that this blog has been our only avenue of communication to most of you, and I hope you understand the logistical (and emotional) difficulty in keeping in direct contact with everyone. We know you're all thinking of us, and we're thinking of you all as well. We look forward to the day when Andrew can meet you in person, though let's hope he's still too young to thank you personally at that point. I'll do it for him....thank you!

Ask Drew: Music

Sue said...

I was wondering what type of music/recordings is Andrew listening to?

Andrew has a diverse musical taste, made up of a bunch of random songs we uploaded to an mp3 player I had laying around the house. We had purchased a Baby Einstein classical music CD, which I converted and included. The rest of the selections are made up of anything that resembles a lullaby, or has babies, sleep, or dreams in the lyrics. There are a few Josh Groban songs, one each from Billy Joel and the Dixie Chicks, and even a few from Israel Kamakawiwo'ole. We like most of the songs, but we've noticed that every time a Celine Dion comes on, it's about ten decibels louder than any of the others.

We've connected this tiny mp3 player to a pair of cheap speakers, which were recently taped to the end of his bed for better positioning. It runs on one AAA battery, which needs to be replaced almost every day. Andrew likes his music a lot....it calms him and helps him sleep....so it plays many hours per day. We bought a large box of replacement batteries at Costco, and when we run out the NICU staff always manages to scrounge up more. Until he can use one of these (drool!), he'll have to make do with his cheap little player.

At other times, he listens to a cassette tape in a NICU-supplied tape player or calming jungle sounds from a "waterfall soother." That's also NICU-supplied, but we have an exact duplicate waiting at home in his crib.

Night Update

I've been writing a lot to answer questions.....please keep them coming! Hopefully that means you'll forgive me for not having a lot to say about Andrew. He's almost entirely the same....up and down on his settings, but mostly down (in a good way). He's past the "minimal" settings they decided upon a few days ago, which means he needs even less support than they were expecting. He's still sedated, paralyzed, and on the hi-fi vent, which will likely be the case for at least several more days.

The doctors had their meeting this morning, abbreviated a bit due to a new influx of patients, but they didn't discuss Andrew for very long. They're happy with his progress and plan more of the same until they're ready for surgery. We'll have a family conference with the doctor on Thursday, where we'll have a chance to ask more questions, get some details, and talk about surgery schedules.

Ask Drew: Mommy

Marianne said...

Sure would like to hear from Danielle. Just thinking of you sweetie and wondering how you are doing?? Are you back to work full-time, part-time?? Are you getting rest? Are you sleeping at all!? How are you holding up?

Sorry to give such one-sided commentary....I don't think she's up for blogging quite yet.

It's definitely been difficult on both of us, but she's had the worst of it. Because of the dragged-out nature of Andrew's condition, it seems like a cycle through the first four stages of grief, without ever reaching acceptance. As much as we appreciate everyone's support, no one can really share the day-to-day emotional burden, which has only gotten worse during the last two weeks of sedation. Now that we were able to spend so much time with him awake and active, and are so familiar with his personality, it's that much harder to deal with him sedated and paralyzed. It's particularly difficult to see normal babies out and about or on TV. Perhaps we're hypersensitive, but it seems like there are babies everywhere...happy, smiling, and very much not confined to a bed, paralyzed, and fragile. (NOTE: Please do not treat us any differently if you have a baby, know a baby, want to talk about or share pictures of a baby, or need to reference a baby for any other reason. It may be difficult, but it's something we need to deal with and hiding from it won't help.)

School started three weeks ago, and D is teaching part-time. She teaches every other day, which means Monday/Wednesday/Friday this week, and Tuesday/Thursday next week. It's good to have something to do besides sit around and think, and is thus a good distraction. She likes the classes she's teaching and the schedule is great. However, it's also hard not to be distracted at work, as we have both discovered.

It's pretty obvious from my posting times that I don't sleep much, but D is trying to make her days off work for her. She sleeps in a bit when she can and takes naps when she can. She needs to, because it's impossible to get "normal" sleep when you have to wake up every few hours. She's been a real trouper and has filled the freezer to overflowing. Once she's awake, it's often hard to go back to sleep, especially if we've gotten less-than-happy news from Andrew's nurse.

I try to sleep in at least one day a week (usually Saturday) to catch up a bit on my missed opportunities....every other day, I'm up early to be on phone calls, at the hospital in the late afternoon, and working on emails and technical stuff all night. That's when I'm not traveling, which I'm doing more and more often in recent weeks. But enough about me.

Ask Drew: Feeding

Leigh said...

Hi J & D. Why is the nutrient mixture bad for the liver and kidneys? Does he receive some milk as well?

Standard practice for babies in the NICU is to make sure they get a certain amount of nutrition, depending upon age and size. This nutrition can come in many forms, but they generally want it all to add up to a particular amount....in Andrew's case, 25cc per hour. This is approximately the volume that he would be getting in milk if he were feeding normally. The feedings that I have been mentioning (currently at 8cc per hour) consist of breast milk that is dripped into his GJ (gastro-jejunal) tube. This is processed in the normal fashion by his digestive system, which extracts the nutrients in the most natural manner possible and delivers them to the blood.

There are two other drips that also contain glucose, running at 1cc per hour each. That means the remaining volume (15cc) has to be made up somehow. The solution is TPN, a bag of yellow nutrients including salts, glucose, amino acids, and vitamins. This is dripped directly into his bloodstream through one of his lines. Since it isn't exactly the natural process of providing nutrients to the body, it can cause problems with the liver, including cholestasis due to gallstones. This isn't an immediate threat, but long-term use of TPN can cause problems. It's different with every child and not necessarily irreversible, but it's definitely better to switch to milk as soon as possible. They're not worried about these problems right now, especially not enough to risk the reflux that could be caused by too much milk. They plan on going to about half-feeds (12-13cc per hour) and holding stable until they can do the stomach valve surgery.

Holding Steady

Another episode in the morning, giving way to a long, stable day. He's on minimal ventilator settings and pretty low oxygen. They're continuing to increase his feedings....I believe they're up to 8cc per hour at this point. They've also had to increase his dosage of sedative and paralytic during the last week or so, as he's started to stir a few times and began breathing over the ventilator. They're not anywhere near maximum dosages, but we hope they'll be able to stay steady until they have the opportunity to wean his medications. All the doctors meet on Tuesdays to discuss the various patients, and I'm guessing Andrew will be a big topic of conversation this week. Perhaps we'll know more tomorrow or the day after.

Since I don't have a whole lot of current information to discuss, does anyone have questions? Confused by anything? Forgotten a medical term? Need something explained in a different manner? Let me know in a comment, and I'll post all the answers over the next few days. It's okay to be curious about insignificant stuff....nothing is off limits.

Answers

Just a quick post to answer a question left in the comments....

Anonymous said...

You refer to how big Andrew is quite a lot.....how big is he?

Good question. To be honest, we don't know exactly, as he hasn't been weighed in a few weeks. The last time he was weighed, he came in at just over 12 pounds. That might not be huge for a kid his age, but the NICU is much more often the home to preemies that started off much smaller than Andrew. When you're born at 24 weeks, you're obviously going to be a very small percentage of Andrew's full 40-week size, which was around 9 pounds. He's also somewhat beefy and pretty strong for his age (and condition). When he wants to get upset, he has the muscular capacity to lift himself inches off the bed with the back of his head, kick lines out of his feet, pull tubes from his face and chest, or clamp down internally so that he can't breathe. Obviously he's not doing all of that at once, but the hi-fi vent is particularly sensitive to babies big enough to "fight it," and sedation prevents him from doing any of these potentially harmful things.

As an aside, I'd appreciate it when anonymous posters provide a name or some indication of who they are when leaving comments. I love answering questions and invite anyone to ask, but my curiosity runs wild when I don't know who particular comments are from. Thank you all for your wonderful comments to this point, and I hope they continue.

Stable

Today was very similar to the last few days, as far as Andrew is concerned. He had a bit of a rough morning, but recovered quickly and is back at minimal ventilator settings. The x-ray showed a successfully collapsed left lung, and he's continued to demonstrate that he can be stable when he behaves himself. The hi-fi vent isn't conducive to an awake, active baby...especially one as big as Andrew....so they'll keep him sedated at least as long as he's on this ventilator. I'm not sure what the plan will be if they switch him back to a conventional vent, but I wouldn't be surprised if he stays sedated until they attempt a more permanent solution.

He's now at 5cc per hour on his feedings, and will continue to increase by 1cc every 12 hours. While the bag of nutrients that makes up the rest of his diet isn't healthy for the liver and kidneys long-term, it's more important that he keeps his food down and prevents possible inhalation of any spit-ups. They'll go up to about half-feeds (~12cc per hour) and then pause until they schedule a more permanent digestive solution (stomach valve surgery).

No exact schedule yet...we'll talk to the doctors later this week and figure out exactly what happens next. It's the start of a new work-week, and I'm already starting off the only way I know how....tired. Hope everyone has a nice week.

Stable and Comfortable

No major updates since yesterday. He's back down to almost-minimal settings on the hi-fi ventilator, but they're in no hurry to switch him to a conventional vent. His oxygen goes up and down as necessary, but he's generally been behaving well. They've upped his feedings to 3cc per hour and will continue the increases in the days to come.

I don't have a whole lot else to write, so I'll leave this as a particularly short post. I hope everyone's having a good weekend.

Roller Coaster

Andrew had a great night last night, and then a not-so-great morning. After getting down to minimal settings and flirting with going back to the conventional ventilator, he sent his CO2 shooting upward and had to have his ventilator turned back up. He was on high oxygen, pressure, and amplitude during the morning, then started to come back down during the afternoon. They also restarted his feeds at 1cc per hour (he was at 21 on Wednesday). To make sure everything was going the right place, they got another belly x-ray and also put a diluted dye into his stomach tube. By seeing where the (bright blue) dye ended up, they were able to verify appropriate digestive movement. They'll start increasing the volume slowly, but probably won't go as high as they were earlier this week.

On the way out during shift change, we got the chance to talk to the head of the NICU. It's been over a week since we've talked to any doctors about his progress, and we were beginning to feel like we were on permanent pause. With two steps forward and two (or three) steps back, there was no real end in sight. After talking to the doctor we felt a bit better, though they're still going to take it slow and steady.

When they came up with this new idea of keeping him on his side to collapse his left lung, the idea was twofold. First, they wanted to see if collapsing that lung impeded his breathing or overall progress...if so, then he obviously needs the use of that lung. Second, they wanted to see if relieving the pressure on his right lung, even temporarily, would allow him to improve. Even though he's had setbacks after getting upset or being moved, he's demonstrated the ability to do better in the right conditions. If he hadn't shown those fleeting signs of improvement during the last week, we would have been having a much different (and more sad) conversation. Since he proved himself in both tests, they know that he's not a lost cause. Unfortunately, his overall circumstances also suggest that his survival is far from guaranteed, and that even a successful path will be a long, difficult one.....nine months and a year were both mentioned as possibilities, but it could be even longer.

At the moment, it looks like the likely next step for a permanent solution would be a lung resection, removing the underdeveloped upper lobe of the left lung so that it no longer impedes the heart or right lung. There are a lot of discussions to be had, doctors to be consulted, and questions to be asked before they would actually perform the surgery, but it seems like the removal may give his right lung a good shot at further development. For now, they want to see him continue as-is for a week or so, keeping the pressure off his right lung and allowing him to have a few good days in a row. Though they probably could wean him back to the conventional ventilator, the hi-fi makes it easier for him to recover from any temporary collapses of his good lung. As such, they'll probably keep him on it for a while.

The meeting was relatively brief, but we also discussed a few lung surgery details, the stomach valve surgery, short-term ventilator plans, and possible complications and setbacks. I won't bore you with the details, but I'll definitely keep posting with Andrew's progress, both with this strategy and toward a more permanent solution. Even with the continued possibility of a negative outcome, we feel better being informed and we really appreciated the doctor's update today. I hope the same is true of Andrew's loyal readers.

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.