A Few Quick and Important Updates!

A few changes have happened in the past 24 hours, and we wanted to keep everyone in the loop:

We've confirmed that acid reflux is at the root of Sam's problems. First, as Jason mentioned yesterday, the impedance study showed that Sam does experience acid reflux frequently, and the swallow study from last week suggested that Sam is aspirating his reflux, which is the likely culprit of Sam's desaturations. Also, for the past 24 hours, Sam has been receiving food in a way that eliminates the possibility of acid reflux, and he has been a happy camper with very stable oxygen levels. It has been nice and calm around here.

Soooo...Sam is definitely going to get a G tube and a Nissen fundiplication. His surgery is scheduled for this Monday at 4:45, and while I'm not thrilled about Sam having to undergo a second surgery, I understand now why it's so important for him to have this surgery. To prepare ourselves, Jason and I attempted to watch a video yesterday on G-tube care. It was quite possibly the most boring video ever made.

Here's some good news: We have just completed a "room air" test, and Sam passed it! This means that as of right now, he no longer has a nasal canula (it's that horrible plastic thing up his nose). Receiving no supplementary oxygen or airflow, Sam appears to be able to maintain his oxygen saturations just fine. Well done, little wolfman!

Other good news: Sam has been checked out by occupational therapy and physical therapy, and he's hitting his milestones--eye contact, reflexes, neck strength, and tone are all good! This is something we've been a little worried about because kids who spend the first month and half of their lives lying in a hospital often have developmental delays. Sam will continue to have occupational, physical, and speech therapy every week for at least the first 6 months of his life to keep him on track. Take that, Kaiser.

Jason is still working on his theory that Sam is in fact a baby genius. He's been trying to convince the nurses of this for weeks now, and our nurse Kellie today did have to admit that Sam has the uncanny ability to pee right on her during every single diaper change. She said that no other baby has ever peed on her quite this much. She didn't seem super excited about it.


Right now, Jason is showing Sam a golf DVD for kids. Seriously. I'm not kidding. It's called "Better Golf for Kids," and he checked it out from the hospital's volunteer office. Sam seems more interested in staring at Sheepie.

On a personal note, I have finally given in to the fact that I live here, and I've made peace with it. I typically know at least one person in the elevator each time I'm on it, and I have a regular spot in the cafeteria where I like to have my morning oatmeal. When either Jason or I leave to grab lunch or go for a run, the other one asks, "When do you think you'll be home?" "Home" being the 9th floor of the hospital. Doctors and I refer to each other by our first names, and I know every single nurse, clinical assistant, and physician's assistant in this place. It kind of reminds me how I missed home when I first went to Camp Friendship in the 7th grade, but once I realized there was no escape, I actually enjoyed sleeping in a bug-infested cabin, spending my afternoons making key chains, and singing songs in rounds before every lukewarm cafeteria meal. Don't get me wrong--I can't wait to get out of here (hopefully in a week or so), but I think I've found a livable schedule here.

As always, thank you for reading, and now I'm going to go enjoy a homemade meal with my friend Lisa.

P.S. Naysh--If you're reading this, I hope you and Pete have a wonderful, wonderful wedding this weekend in Hong Kong, and I'm giving you a big hug long distance.

Hungry Like the Wolfie

Hello all! It’s Jason. This morning I tried to educate our clinical assistant, Heather, regarding the value of 80’s lyrics, but she just wasn’t convinced. She persisted in claiming that those lyrics had no real insight or value. Sam was startled at her declaration (see picture below)! Hopefully, with a little help from the Wolfman, we can change her mind.

Let’s start with a summary of the week’s issues: remember Weird Al Yankovic’s pastiche, “Eat It”? “How come you're always such a fussy young man?/Don't want no Captain Crunch, don't want no Raisin Bran/Well, don't you know that other kids are starving in Japan/So eat it, just eat it.” Yes, indeed, this is a poignant explanation of Sam’s eating issues this week. The kid just gets so fussy he can’t seem to keep down his lunch. When asked if he was, in fact, the saddest little guy in the room, Wolfie was quoted as saying, "Waah!"

Personally, the doctors and I blame Duran Duran. We know that Samuel has been “Hungry Like the Wolf[ie].” On the other hand, “The refl[u]x is an only child he's waiting in the park/The refl[u]x is in charge of finding treasure in the dark...Every little thing the refl[u]x does/Leaves you answered with a question mark.” Ok...so in retrospect, Heather may have a point: this particular song is nonsense, but you can totally dance to it. Nonetheless, the concept stands: reflux has seemed to be the main culprit. Yet no matter what variations we’ve tried to solve it, there have still been as many questions as answers. So, as you know from Kristin’s last post, we did a 24-hour impedance probe study starting yesterday afternoon to see if it could confirm our suspicions.

And sure enough, Samuel was hot right out of the gate. He channeled his inner Whitesnake: “Here I go again on my own/Goin’ down the only road I’ve ever known.” Yep. He kept up his modus operandi: feeding, reflux, aspiration, desaturation, bradycardia. In that order. Clearly “One Thing Leads to Another.” A nice little chain of cause and effect that we need to Fixx. The pattern continued all day. In fact, it got so bad around 5 a.m. this morning that Sam’s “sats” dropped all the way to 30%, and it took several minutes for him to recover. Very scary. It made us feel like Sting and the Police: “Every breath you take/Every move you make…I’ll be watching you.” So we and the nurses did. Which is quite trying. You see, “[H]e’s got eyes of the bluest skies/As if they thought of rain/I hate to look into those eyes/And see an ounce of pain.” So this morning during rounds we spoke to the doctors about what to do for this “sweet child o’ mine” while awaiting his test results...

Wow...talk about uncanny timing. The docs just showed up with the test results. They say that the statistics of the study suggest that Sam’s case of reflux is borderline. Borderline?! “Borderline, feels like I’m going to lose my mind! [They] just keep on pushing my love over the borderline.” However, when combined with the clinical correlation of his symptoms to the now-documented reflux episodes, they feel that there is a very strong probability that the reflux is the main culprit behind his complications. Therefore, today’s goals have now changed:

1) Keep Sam comfortable. That means no more tweaking his oxygen until his sats stabilize.

2) Stop the gavaged, bolus feeds that appear to be causing his severe reactions.

3) Confirm the reflux diagnosis. Now he’ll be fed exclusively through the NG tube, but it will be located trans-pylorically (you may remember he had this before while in the CI). It just means the NG bypasses his stomach and goes straight to his intestines. This has two benefits. First, it stops the reflux. Second, if he does well feeding this way and has no desat episodes while on it, it will strengthen the conclusions of the study, pushing the conclusions beyond “borderline” and further warranting the intervention of the G-tube.

Hopefully, tomorrow we will know with more certainty what our plan of action will be. Tomorrow is a new day. Hopefully, we can turn these recent complications around...which leaves me with three final lyrical references before I share some pictures. Sometimes, the “words you say never seem to live up the ones inside your head.” Okay, strictly speaking that’s from Soundgarden in 1994, but you get the point. In this case, Bonnie Tyler and Steve Perry really capture this moment better than I can. Tyler sings, “Turnaround, every now and then I know there’s no one in the universe as magical and wondrous as you/Turnaround, bright eyes.” That’s hoping that Sam can turn the corner. And Perry reminds me (after this rough couple of days), “Don’t stop believin’/Hold on to that feeling.”

So here we are holding on and believin'...in the meantime a few more pictures for your delight and for ours.

Here is Sam with my cousin Kevin and his wife, Jessica. They were in town this weekend from the East Coast; it was really nice to see them, and Kevin takes much nicer photos than we do.

Here Sam expresses consternation regarding the prospect of having yet another surgical procedure. He felt a little better after BearMan spooned him for a while.

And finally, here is Sam without tubes. Check it out; this is what he'll look like when he's out of the hospital and off the tubes. This is what we're holding on for! When interviewed about the possibility of going home, Sam said, "I've never been outside." Then he drooled on himself.

Nuthin but a G (Tube) Thang

For our blog readers who don't enjoy Wii Rap Star as much as I do (this is Kristin, by the way), the title alludes to one of Snoop Dog's classic anthems about a day in the life of a gangsta.

Sam is definitely still the man, but he is also unfortunately still the man with major acid reflux. Back when our pediatric cardiologist told us that Sam would likely have feeding issues after surgery, I didn’t feel too concerned about that part of his recovery. After all, compared to open-heart surgery, a little acid reflux doesn’t sound so bad. What I didn’t realize was that acid reflux is a huge deal to a little guy like Sam. I will try to keep it brief, but his digestive problems are much more severe than that of an adult or a healthy baby, and here’s why:

1. One of Sam’s vocal cords was damaged during his surgery. Because of this, Sam aspirates pretty much everything except for breastmilk that has been thickened to a honey quality.

2. Because Sam has to work so hard (and burn so many calories) to suck and swallow this thickened milk, he has an NG tube so that he can get the daily calories he needs in order to heal, grow, and develop appropriately.

3. Unfortunately, the NG tube keeps some sphincter open in his throat that adds to his acid reflux.

4. Sam has frequent acid reflux, as many babies do, but he aspirates his reflux.

5. When he aspirates his reflux, his oxygen saturations plummet, and his heart occasionally clamps down as well. It’s terrifying, and he needs to have his oxygen turned immediately up in order for him to recover.

6. All of the food, acid, etc. that Sam aspirates into his lungs puts him at risk for a serious lung infection.

The solution that the doctors are proposing? They’re thinking that he will likely need a G tube, or a feeding tube that goes directly into his digestive tract. They also want to “wrap” part of his digestive tract (Jason and I don’t fully understand this part yet, nor can we remember the official name of this procedure at the moment) that would essentially stop his acid reflux altogether. The huge benefit of these two actions—the G tube and the “wrapping”—is that Sam’s acid reflux would be gone. Combined with feeding him only honey-thick milk, the G tube would significantly reduce his aspirations and thus reduce his risk of lung infection.

The G tube is also preferred over the NG tube by many doctors because the NG tube can come out easily and be misplaced in the lungs, but the G tube tends to stay put. Many occupational therapists recommend the G tube over the NG tube because the NG tube may cause oral aversions. Also, if Sam were to need medication immediately, the G tube would be an efficient way to deliver it. And most importantly, the G tube will allow Sam to continue bottle feeding but will offer us a way to deliver extra food and calories to make sure that he continues to grow.

Of course, as you may have noticed from our earlier posts, there are no easy solutions around here. Placing the G tube requires another surgery, which means that Sam would have to go under general anesthesia again, be intubated again, go back to the CICU, and face the same risks that all surgeries pose. I’m not particularly looking forward to seeing another tube sticking out of my son’s body, and the thought of messing around with yet another part of Sam’s anatomy is not ideal. Wasn’t rerouting his circulatory system enough? While Jason and I are open to the idea of the G tube, we still need a little more convincing before we hand our little man over to the surgeons once again.

So tomorrow, Sam will undergo an impedance probe study, a test in which the doctors will monitor over 23 hours how frequently Sam has acid reflux, how acidic it is, and how much of it there is. After that, they will make their recommendation. Jason and I feel fairly certain that Sam is refluxing far too frequently, and while the G tube is scary, so is jumping out of bed several times a night to try to keep him from choking on his vomit and de-satting. While it’s not set in stone, we feel uneasily certain that the G tube is in his not-too-distant future.

Apparently, most Norwood babies go home with a G tube and keep it for at least one year. Also, we’re going to be here for at least two more weeks. When the doctor told me this yesterday, I talked myself out of hyperventilating because I was holding Sam at the time. The thought of two more weeks of beeping alarms, of eating take-out, of living in a tiny room, of Sam lying in a hospital bed, of having absolutely no control over anything…it was too much. I sat and felt sorry for myself until I decided it was time for a run.

But just as I was changing into my running clothes, something happened that stopped my pity party in its tracks. There was a code blue on our floor. Just two doors down from us, a newborn boy’s heart stopped beating. Blue lights were flashing in the hall, and alarms were going off that could wake the dead. When I looked in the hallway, the baby boy’s room was packed with doctors and nurses from the CICI, CPCU, emergency department, and anesthesiology. People in labcoats and scrubs were spilling into the hall, and I could almost hear the anxious pounding of everyone’s heart…and the sad silence of one.

My realization: we can deal with digestive issues. They are a pain, yes, but manageable. We need to be thankful that someone was able to take our son’s tiny, defective heart and make it work. Each day that he’s alive is kind of a miracle. After the baby two doors down was taken to emergency surgery, one of the nurses came in to give Sam his meds. She looked at us with exhausted eyes and said, “Count your blessings.”

In that same vein, I would like to share a few of our blessings through the pictures below:

Here is Sam the Man sucking down his bottle with passion:

Here's the little guy being comforted by his dad, who is wearing some kind of weird hat donated by the CU sports teams:

And here is what Sam would look like if he were part buffalo:

This is Sam enjoying his "Tough Cookie" outfit that our friend Julie sent us (we love it, by the way!):

Here's the little man looking fierce in a beautiful hat that my brother-in-law's mother made for him:

Here is Sam contemplating the meaning of the universe:

Twelve seconds later...

Following Sam's example, I'm off to sleep now. Thanks for reading!

Silent Aspirations

Today's sign that we've been in the hospital too long: during this morning's rounds, a physician's assistant said to Kristin, "Wow, you really must have been here a long time to be able to ask those kinds of questions." My wife--the self-proclaimed doctor who is 6-for-6 in successfully diagnosing her friends' suspicious illnesses--actually blushed.

A friend of mine told me today that every time we skip posting for a day that her heart skips a beat. Generally missing a post means that either we were so exhausted we passed out early or we were up all night with the little guy. Apologies for making you worry. The last two nights, each portion of the prior statement rang respectively true. Wednesday night was blessedly silent. Kristin and I each passed out around 9:00 and slept through the night. It was awesome.

Of course, Thursday night if we split 5 hours combined, I'd be surprised. Remember the aspiration concern from the last post? Well, Thursday morning around 10:00 a.m. Samuel clearly got milk in his lungs while breast feeding. He started sputtering, his "sats" dropped to less than 40%, and his heart rate dipped to half its normal pace. We had to crank up his oxygen flow (doubling it!) to bring him back. For the rest of the day, he had a terrible, ashen hue. If split-pea soup were blue, that color would best describe his complexion. We spent the rest of the afternoon and evening watching and "chasing" his sats, which had become highly unstable, wavering between 50 and 98 (we want him to stay in the 75-85 range). By evening we thought he'd recovered. So when Anne and Jeff brought over fresh food (mmm...mandarin orange chicken salad and fresh fruit) for dinner, we happily ate and Sporcled the evening away. Here's Jeff with the the little bean. Look for the taller of the two in the Boston Marathon in a week or so. Good luck, Jeff!


But there was more excitement yet to come! You know those volunteer groups that bring animals into the hospital for the delight of their patients? Well, one volunteer showed up with a horse. Seriously! Look at that monster! If it weren't for her glitzy outfit, I'd swear that Great Dane was just sniffing us to find out who was the juiciest... The only reason we (really I mean "I": I'm perhaps a bit phobic regarding dogs, especially this sort of huge, man-eating type) let the behemoth in the room in the first place is that she shares the name Peyton with one of our kitties and our friend's, Cara's, daughter. That and she had her own business card. No joke. Check it out. Anyway, fortunately no one was mauled and we all went our separate ways in peace.


Now back to the other animal in the room: Wolfie. Just as Anne and Jeff were starting to leave, Samuel had another serious drop. Once we stabilized him again and shortly thereafter changed his diaper, the nurse noticed something red in his stool. Sure enough: blood. This time the doctors got involved. They suspended all feeding, ordered a CBC, a CRP, and a battery of other "ER"-sounding tests to determine if he had NEC or some sort of internal bleeding. Naturally, at just this moment, Sam's I.V. line blew, making it much more difficult to get the blood necessary for the tests (don't forget: it took 7 tries to get a viable vein for the I.V. the first time around). An hour later, they brought in a ringer who not only noticed a tiny scratch on Samuel's tushie (explaining the blood) but who also managed to get the requisite blood for the tests (which ended up being negative). Throughout the rest of the evening, Sam "de-satted" repeatedly, causing Kristin and me to gray prematurely. The only thing that seemed to help was to hold him upright and constantly burp him. Kristin and I took turns until somewhere between 4 and 6 a.m. when he finally stabilized indefinitely.


Fortunately, today Samuel had his "swallow study." Check out THIS VIDEO (crank down the volume first) showing what this kind of study looks like; it's pretty amazing, really. They bottle-fed Sam using a variety of thickened milk and bottle-nipple combos. Each time he swallowed, you could see where the fluid went and how. Sure enough: perhaps because of the paresis (not paralysis!) in his vocal cord, Sam aspirates just about every time he swallows. And what's more, Sam currently lacks either the awareness, the strength, or (sadly) the vocabulary to object like you or I would. We would cough, turn red, and complain about something "going down the wrong tube." Sam suffers in silence. These silent aspirations may be responsible for why he can't feed well. They also may be the root cause of his sporadic and uncontrolled saturation drops. When too much fluid builds up in his lungs, they just can't work properly, throwing off the whole synergy of the cardio-pulmonary system.

While this, frankly, sucks, at least we now have a sense of the root cause of his complications. Also, this may be treatable without resorting to more invasive measures such as inserting a G-tube. Silver lining? Check. Armed with this new knowledge, Kristin and I will remain not-so-quietly hopeful that the little guy will start to improve more quickly and that we will get to visit our little Peyton (and Roxie) soon. Good night, everybody.

Don't Poke Me!

Sorry we've been away for a couple of days...chalk it up to being exhausted; I'm afraid the CPCU is not as calm as we thought it might be. In fact, our friend Anne stopped by to go running with me today, and she was amazed that five different people stopped by for five different purposes within a twenty-minute span: respiratory (to check Sam's lungs), lactation (obvious), OT (swallowing), nurses (vitals, meds, and food), and of course our case worker (fighting the good fight against insurance companies). And today was a calm day!

On a brighter note, Kristin did manage to pick up mail and packages from home this weekend. Thanks Susan and Stephanie for the awesome blanket and hat. Sooo cute. Go Buckeyes! And at this point, you know I love a good hat. Look at the little poof on top. :)

Here's Kristin with the little snuggler between pokes. In the last two days, the doctors decided to pull Sam's PICC line. Remember we said he was struggling with feeding? Well some of that may be due to a combination of meds including diuretics to limit fluid buildup. However, to keep the PICC lines open, they had to constantly flush them, adding quite a bit of fluid to Sam's body during the course of a day. So, to help limit the use of diuretics, they needed to pull the PICC, which was also an infection risk. In order to do this, however, Sam had to have an I.V. inserted. All told, it took four nurses seven combined tries over two days to finally get one (Suzette, you are awesome!). Sam barfed after 4 of the 7 attempts--awesome, now he's actually losing weight--and he now has needle holes in his right and left hands, both sides of his neck, his foot, his elbow, and even his scalp. Poor little guy. He's needed a lot of snuggling (and Tylenol) to calm him down over the last 24 hours.

You might also notice that Kristin is wearing a facemask. It may be allergies or simply feeling run down, but we both wore masks for a couple days because we were starting to have cold symptoms. As one nurse told us: "Nothing good ever happens in a hospital. Get out before you get sick." The irony did not go unnoticed.

By the way, anyone notice that Sam and I wear the same hair style? Sans beard, of course, but give him a couple months...

In other news, on one of the days when Sam was doing his best imitation of a pincushion (did I mention he got poked for an RSV vaccination? Puked after that one, too), he also got a visit from the ENT (ear, nose, throat) specialists. They didn't poke him. They put a camera tube up his nose and into his trachea to look at his vocal cords. I have to admit, I thought it was kind of cool. Especially watching the recording in slow motion. The good (and bad) news is: the ENT team thinks they've found the underlying reason for Sam's emesis. During the Norwood surgery, a certain nerve related to control of the vocal cords winds around in the general area of the heart. This nerve is very sensitive and is often bruised, stretched, or nicked during the heart repair. This evidently happened to Sam as we could quite literally see that one cord was not moving as it should. In the vast majority of cases, the nerve heals itself over time leaving no side effects, but in the meantime (especially in conjunction with the NG tube), the patient may be especially susceptible to acid reflux and therefore aspiration. It is possible, if not likely, that such temporary nerve damage has been a factor in Sam's feeding issues. Soon, the ENT team will further evaluate using a "swallow study." Hopefully, the results will help us to understand how to help him learn to feed more effectively.

In the meantime, there is some good news:
1) We won our appeal against Kaiser; they have agreed to pay for the pulse oximeter that we need. Victoire! Victoire!
2) Sam got a new luxury bed. Check out the size of that monster! (the bed, not the baby)
3) Which reminds me: it's sleepy time. That's good, too. Night all!

5 Signs That Jason and I Have Hospital Pyschosis

During my first two weeks at the hospital I refused to leave. Period. Forgetting the existence of the outside world, I would depart briefly from Sam's bedside only to (a) eat, (b) use the bathroom, or (c) use the lactation room. That was pretty much it. As I stumbled to the lactation room at 2:00 am one quiet morning in the CICU, a kind night nurse took one look at my bloodshot eyes, my unwashed hair, and my wrinkled pajamas, and said, "Honey--why don't you go sleep in the sleeproom with your husband?"

Before I could blow her off the way that I blew everybody off who suggested that I needed more sleep, she told me about a phenomenon called "hospital psychosis," and warned me that I was in grave danger of falling ill to this mysterious mental ailment that creates delusions in patients and people who spend too much time in an intensive care unit. Apparently, the constant alarms, lights, and movement of nurses and doctors take their toll on the body's biorhythms.

I didn't take her too seriously at first, but as I watch the ability of my brain (and my husband's) slowly diminish, I'm starting to wonder if maybe she was right. Here are just a few reasons behind my suspicions that Jason and I may be developing hospital psychosis:

#1: Today, April 2nd, I asked my friends if it was Groundhog's Day. I honestly thought it was, and I wondered whether or not the little animal had seen his shadow.

#2: Yesterday, Jason asked me if I wanted something from the community fridge. I told him that I wanted a chocolate Muscle Milk. A few seconds later, he returned with a cup in his hand and said, "Here's your water." Then he frowned into the cup and said, "No, wait--this is what they used to heat your breastmilk in." To which I replied, "Gross. And I ordered a Muscle Milk, not water."

#3: As I was trying to rock Sam back to sleep around 5 am the other morning, I tried and tried to think of something to sing him. The only song--the only song--that I could think of was "Peaches" by the American Presidents. So I sang that. He seemed to like it just fine.

#4: I perceive my breast pump as an evil dictator who has successfully enslaved me.

#5: Jason and I got sandwiches from Jimmy Johns today, and when I remarked about the how big their pickles were, neither Jason nor I said, "That's what she said."

Remedies for this peculiar disease?

Love from our friends and family. When Maura Moritz brought me the incredibly generous gifts and cards from Arapahoe staff members, I actually burst into tears. I couldn't believe how kind people were. Thank you, thank you, thank you. We also have friends and family who are kind enough to drive out here almost every other day, bringing us healthy food, checking on us all the time, buying us butt paste (for Sam, not for us), paying for hotel rooms, and trekking out here just to go for a run with us. The nurses keep commenting on how popular Sam is, and each time, I think about how lucky we are.

This blog. The process of writing about our experience here makes it less surreal, and people's comments, as I mentioned before, are part of what keeps my head above water.

And of course, the little guy himself. Here are some pictures from today so that you can enjoy him as well. :)

This is Maura enjoying his company. They had a good conversation.


Here he is being burped by Jason for the first time. Not everyone can look cute with vomit dangling from his chin!

He looked pretty cozy in a chair this morning next to his new best friend, Sheepie. He stared lovingly at Sheepie for a full 30 minutes today.



And tonight, I'm off to sleep in a hotel room for five glorious, uninterrupted hours. Nighty night.

A Snail in a Well

It's Jason. Though I will say that I want to keep this short, my students might say I have a hard time so doing. We'll see. Only three notes tonight:

1. Hotel: Thanks again, Lisa. Kristin hasn't left the hospital in almost three days. Somehow I convinced her (more likely, she simply decided) to leave and spend the night in the hotel room provided by our friend. A number of our friends and several of you have suggested that Kristin and I are somehow imbued with a preternatural strength of character to handle all of this. I believe that all of you would do the same. That's what people do. As Cristof claims in The Truman Show, "We accept the reality with which we are presented." You would handle it, too, if you had to. That said, there is something to be said about the stamina required to cope on a daily basis. I'm glad my wife is taking care of herself tonight.

2. AHS: Wow. We are speechless. Thank you for your generosity.

3. Q (a classic riddle): A snail is at the bottom of a well and wants to get out. He manages to crawl up the wall 3 feet each day, but at night he must rest (after all that work during the day ) and so he slips back down 2 feet, netting 1 foot per day. If the well is 30 feet deep, How many days will it take him to get out?

A: 28 days: Assume it does not slide back once it reaches the top.

The answer, of course, is not what is important here. What is important is the concept. Progress-regress. Progress-regress. Et cetera... Now, as far as our little snail goes, we have officially regressed. Wolfie's back on the sauce. Oxygenated air. He's also regressing with his feeds. We like to think of medicine as an exact science, some sort of alchemical algorithm that inevitably turns lead into gold. Unfortunately, that's just not true. For example:

Samuel needs food. He needs to keep his respiratory rate down. He needs to keep his "sats" (oxygen saturation levels) in a very specific range. Problem. To get food, he needs to eat, but eating tires him out, decreasing his sats and leading to tachypnea. So, we put breast milk through his NG tube right to his stomach. But his stomach is not used to processing food (which was given him via IV and a trans-pyloric tube). Guess what happens...he throws it up. Which makes him angry which makes him breathe faster and skews his oxygen saturations. Vicious cycle the last couple of days. The chemical adjustments (how to feed, breathe, and saturate in the correct ranges all at once) are proving more complicated than the mechanical adjustment (the Norwood surgery). Remarkable.

Can't wait for rounds with the alchemists in the morning. Here's my thought: if the snail's foot had better traction, it wouldn't backslide as much; therefore, it wouldn't take 28 days to climb out. So...add salt. Think about it: increased traction would keep it from falling back, right? But...how do you do that without shriveling the snail?! Tough little conundrum, eh doctors? If they can't solve it, it's looking more and more like we're simply going to have to wait the full 28 days. We've gotta figure out how to either quit sliding back down the well or how to simply wait. I'll steal from Matthew McConaughey from Dazed and Confused here: "Patience, darlin'. Patience." (that one's for you BSimp)