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)

Hope

Today was such a busy day for all three of us...

On the one hand, I don't know where to begin; on the other, I have little energy left to type this tonight. How about a simple list?

1. Sam was entirely off of oxygen for 6+ hours yesterday!
2. Sam started breast feeding a little bit. In some ways it's making his feeds more complicated. Because it's nigh impossible to measure how much he takes directly, it's very difficult to figure out how much more he needs. If you guess wrong, he goes hungry or overflows. Today, he overflowed. All over our friend, Anne. All over everything. Repeatedly. Yesterday poop; today, vomit. Ahh, parenthood. I'll dramatize the episode one of these days, but not tonight. Hopefully we'll be able to figure this out in the morning.
3. LOTS of visitors today. No fewer than five people from the outside world came to hang out with Wolfie and us. Very nice.


4. Insurance woes: the energy suck that results from dealing with bureaucracies largely accounts for why there was no post yesterday. Details later. Tomorrow, perhaps. Suffice it to say, the company is willing to pay for the $540,000 surgery and convalescence but not for a necessary monitor to take home once we're discharged. Evidently the $300/month will break their bank. We've had upwards of 20 personal visits or phone calls in re this subject in the last 36 hours.
5. On the bright side, Samuel discovered today that he makes a really cute stegosaurus.

6. Finally, a note on the title of today's post...
Many of you will remember why hope is particularly important to Kristin and me. As noted in the first post of this blog, we named our little baby girl Hope. She had triploidy and was born after just over 20 weeks. She had no chance to live. And though her death hurt us, we held on to hope nonetheless; if we hadn't...I don't even know how to finish that thought. Switching gears. In The Shawshank Redemption Andy Dufresne (Tim Robbins) says, "Hope is a good thing, maybe the best of things." That hope has been rewarded with not only having Wolfie in the first place but also his rapid and impressive progress from CICU to CPCU. Today's gastric revolution and voluminous puking aside, my wife and I really could not ask for much more from the little man. In spite of the severity of his disease, Kristin and I feel lucky. And hopeful. Which returns us to the title of this post. As evidenced by numerous comments and responses on this blog, Samuel is not the only child who has ever had or ever will have HLHS. There is another family here whose baby has the same disease. This baby has been struggling. This baby has been in the CICU upwards of 45 days with few signs of an imminent move. Sam was only there for 12. We are lucky. That said, if it's not too much to ask, those of you who are following, add one more child to your thoughts or prayers tonight. He and his family could use a little hope, too.

That's all. I'm spent. Guess the list wasn't so simple after all. As always, much love and appreciation to all of you.

Oh, I almost forgot...the mother of the child I mentioned above? Esperanza!

A Night in "the CP"

My wife will probably be mad at me when she reads this, because she's going to blame me for stealing all the good stuff that she had planned on writing about. She's sleeping, however, so phlbbth!


We began the day wondering about the phenomenon of the CICU time warp; it feels like we don't do anything all day yet are constantly busy. Paradox much? I'm not quite sure how it happens, but it's true. My best idea is that the days are full of several tiny events, each of which may be individually inconsequential, yet collectively demand all of our attention and time. Here's an example. This morning little Wolfie looked something like Two-Face from The Dark Knight. See how the right side of his face is all dark? Well, it went all down his chest as well! I admit I was startled. Yet upon further research (read: ask the doctors), I found out that he simply had "harlequin color change," a harmless, self-resolving condition in which a baby's color on half of his or her body will turn darker than the other half depending on which side is down. It's completely harmless and will go away soon, which makes it actually kind of cool. (Ed note: be wary of researching this harlequin thing on your own. Seriously. I'm not kidding.)


Later, Samuel got a bath. So cute! And he seems to be really enjoying it.


Oh...almost forgot. Some friends were asking about the Tide reference in the last post. To clarify, Kristin did not go home or do laundry; she did leave the hospital, though, because she was desperate for clean clothes. I, for one, am thrilled she took a much-needed break. At any rate, she went to Sports Authority and shopped for a couple of hours, buying some new, non-maternity walking/running gear. Here, our friend, AT, celebrates Kristin's pilgrimage by sniffing her new Nike's. Why? I have no idea.


In more important and relevant news, Sam was sent upstairs to the CPCU today! Hooray! We're now on the 9th floor and have a private room with a private bath. Hooray! Also, we can have more than one guest at a time, so if people want to come visit, give us a call. This is big time. It means he's doing well enough that we may be able to go home soon (knock on wood...). At this point, the doctors are still "tweaking" his air flow and his meds as well as trying to get him to feed independently of his NG (nasogastric) tube. Tomorrow, they will start "bolus" feeding rather than continuous feeding in hopes that he will be hungry enough between boluses to try feeding without a tube. The sooner he does that, the sooner we go home. Hooray!


Finally, just wanted to give a shout out to Jax, our overnight CPCU nurse. While we were excited to be moved up to the less critical ward, we were a bit concerned because we didn't know how much one-on-one attention Sam would be getting. Luckily, though Jax normally works in "the CI," tonight she was floated and randomly assigned to us. We felt much more comfortable because she and Sam are kind of going steady now, and we knew she would take great care of him and us. Sure enough, we could not have needed her more. The faint of heart should stop reading here...good night! Sleep well!

Okay, the rest of you. So one of the goals of "the CP" is that parents start to participate more directly in their child's care. Kristin and I interpreted that to mean "diaper duty." As the clock struck 10, the smell of something nefarious crept into our nostrils. We knew it was time, and we were ready for action. Kristin stood on one side of the crib; I took the other. She with wiping cloths, me with fresh Pampers. We managed to wrangle him out of the bottom half of his onesie. Thank goodness for front snaps! I placed the new diaper underneath his butt before removing the old one as I had seen the nurses do...just in case the fresh air caused a new rain shower. I tentatively untaped each side and found gold. I pulled the old diaper out and held up the front of the new one as a shield in case he was ready for Round 2. Sure enough, after only a couple of passes of cleaning his bottom, it became clear that more was on the way... Ka-boom! Explosive, chocolate-brown baby poop came frothing out onto the new diaper. No problem. That's why I put it there in the first place. But since it hadn't been fastened yet, it started dripping onto his nice new blanket. Kristin shouted, "He's peeing, too!" That got all over his onesie. I calmly suggested, "Hit the call button for the nurse." To which she replied, "No way. Not for a simple diaper change." By the time old Samuel soiled the third new diaper and every piece of linen within five feet of his tuckus, Kristin and I were laughing hysterically. Just then, Sam's savior, Jax barged in. She asked, "I heard him screaming, watched his heart rate shoot up on the monitor, and heard you guys laughing. What is going on in here?!" Perhaps it was the sight of multiple diapers on the counter in his crib on the floor...but it didn't take her long to figure it out. Kristin and I couldn't breathe from laughing at our own incompetence, and sure enough Jax had everything under control in about 45 seconds. In appreciation, Sam got on the internet and used jibjab to write her a thank you card. It is the last picture of the night. Enjoy.

Thanks for the LittleThings

Jason talking (you can tell by the ellipses, my favorite punctuation).

Looking back over the last few posts and preparing to write today's update, I find that the drama level seems to have substantially diminished (a very good thing!). So rather than build up a grand story line, I'd like to take time today to send a number of thank you's, mostly for little things that seem huge today...

1. Riete and the "strange lady from Oklahoma [self-titled]": I've been meaning to thank you for so loyally following Wolfie's progress and offering consistent good thoughts and encouragement. I don't mean to suggest that we're not blessed with great friends and family who haven't done the same--they have!--but it's like a snow day: you love Spring Break, but what's better than an unlooked-for day off? So, thank you for the unexpected support.

2. The Rhee's, Medha, and all the IB kids and CTHS people who've been so kind to us: You really didn't have to do any of it. That said, Kristin and I appreciate it; by the way, the home-cooked soup was awesome: curry chicken, coconut milk, rice...so much better than cafeteria fare, and my wife would like the recipe. Really. Please send it to us. :) This is Medha visiting the little guy.


3. Clothes. a) It's a good thing we got a few copies of this particular onesy (onesie?) because Sam pooped all over it. See his little pirate look below? I think he was planning it all along. b) Remember those Tide commercials after Hurricane Katrina? The ones where refugees who'd lost their houses and everything in them were thanking Tide for clean clothes? I used to think the commercials were stupid. But getting clean clothes got Kristin out of the hospital today, and she seemed to feel more human afterward. Maybe there's something to this clean clothes thing after all...


4. Next, Lisa: Thank you for the hotel room! King-sized bed. No beeping alarms. Dark. Awesome. Now if I can just get Kristin to go with me for a few hours...

5. Baby steps in Wolfie's journey home: a) The doctors removed his arterial line today. That means fewer drugs being administered and the closer we are to the Cardiac Progressive Care Unit (CPCU). b) The docs also started weaning him from his oxygen flow. He is receiving 37.5% of what he was getting two days ago. Again, one step closer...c) Samuel still has some tachypnea, but it seems to be a bit less of a problem than it has been. Today, the doctors called him "comfortably tachypneic." Sounds like a bad Pink Floyd cover band. Either way, he's moving in the right direction. d) And finally, this little video is totally out of context, but I thought it was cute, so enjoy. More news and more ellipses tomorrow...

And the Feeding Issues Begin!

An update from Kristin:

Well, they warned us that feeding issues were the most common post-surgical complication with the Norwood, but a part of me was secretly hoping that little Sam would be the first Norwood baby ever to sail through recovery without a single feeding problem. As you can probably see by the title of this blog, however, I was wrong.

Sam fussed through most of the night, and I just had a feeling that his little stomach was bothering him. Sure enough, first thing this morning he threw up some breastmilk along with his NG tube. Sam-style, he accomplished this right when the doctors were rounding and raving about how wonderfully he was doing. They had actually just finished discussing how he should be able to switch to oral feeding very soon, but once he threw up his NG tube, that plan was quickly replaced with a different one: give Sam an NG tube that goes directly into his intestines instead of just his stomach. They figured that the high-pressure air flow he has been receiving through his nose has been filling his stomach with air, and the NG tube has been filling his stomach with food, thus leading to a very grouchy and uncomfortable little fellow.

Nor did he enjoy having the NG tube shoved into intestines. In fact, he somehow managed to snort the entire thing out (all the way from his intestines--he's a determined little boy!), so when they reinserted it, they had to tape it down to his face very thoroughly.

Side note: Dr. Jaggers, Sam's brilliant heart surgeon and a man of few words, examined Sam's belly, looked at multiple charts and x-rays, and declared, "This boy has a gassy tummy." I guess as far as complications go, this one is pretty manageable.

Thankfully, the deeper NG tube has made him feel better, but it does set us back a little. His ticket out of here is feeding orally, and now he's a bit further away from that. When I asked the doctor how long she thought it would take to get him feeding orally, she pointed her finger at Sam and said, "He gets to decide. For some babies, it takes three days, and for others, it takes three weeks." The thought of three more weeks in the CICU made me panic slightly, so I decided to take a walk to Caribou Coffee and pretend to be a normal human for a little while. It was nice.

When I came back, our nurse decided that it was high time for Sam to be a normal human as well, so she gave him a bath, which you can see him deeply enjoying here:


...and dressed him in real clothes for the first time! He is officially no longer a nudist. Note the monkey feet:


Also, Sam had the pleasure of being held by several visitors on Saturday, and here are some pictures from their visits. If anyone else would like to come snuggle this little one, please come by. Enjoy!

Dull is Good

No news today. Sorry, Kristin and I spent hours and hours doing nothing particular and somehow forgot to post. There were no significant medical changes today. Samuel continues to improve. We (and a couple of visitors) got to hold him for several hours. Sam and I just finished watching "How to Train Your Dragon." Kristin kept telling us to turn it down. It was a lovely day full of nothing much. I'll remember to post a couple of pictures tomorrow. In the meantime, Happy Spring Break CT; call me if you'd like to come visit. And good night. Here's to more dull days just like this one!