Upkeep:
1) Photo: a couple of people have commented on Sam's photo from the last entry, and I realized I forgot to give proper credit. A photographer named Angie Taylor, a friend of my sister-in-law, photographed Sam a few weeks ago. She took a number of beautiful photos and kindly sent several to us via email. Her work is what you are admiring.
2) Blog comments: in my day-to-day world (it's Jason), I'm not known to be the most emotionally demonstrative person in the world. In fact, a friend of mine recently said, "Dude, you don't even like to answer the phone; how can you make your blog so public?" Good point. Maybe I (we!) need the support in ways I hadn't expected. That said, Kristin and I love reading the thoughtful comments that so many of you leave. On days like today, they make a difference when we need to marshal our strength.
Update:
Last night, to calm Sam down from his middle-of-the-night desat, echo, and x-ray, I sang him a song. The only one I could think of was Simon and Garfunkel's "The Boxer." In light of the last 24 hours, the last stanza seems as prescient as ever:
In the clearing stands a boxer
and a fighter by his trade
and he carries the reminders
of ev'ry glove that laid him down
or cut him till he cried out
in his anger and his shame,
"I am leaving, I am leaving"
but the fighter still remains.
It's the last line that does it to me. In spite of all the trauma, so bad that you not only want to submit, you actually say you are done...and yet, you don't concede. That's the part that I love. You still remain. Wolfie will be fighting a new battle for the next several weeks.
This morning, we woke up to the surgeon in our room (never a good sign). We learned that there would be no MRI or CAT scan today because of risks to Sam's health. Overnight, his blood cultures grew. This means that the something in his heart is at least partially made up of infectious bacteria from the strep family. He started a new antibiotics regimen today and will do so for approximately 6 weeks. Two hurdles exist:
1) He needs semi-permanent IV access. This was accomplished today when cardiac anesthesiology placed a PICC line. We will spend at least tonight in the CICU to make sure the procedure has no complications.
2) The second hurdle is more dangerous. The goal is for the antibiotics to slowly dissolve/melt/erode the mass. Pick a word that works for you. The problem is that there is no way to control how this process occurs. Picture an ice cube on a sidewalk. If the ice cube slowly melts, you almost don't know it. Water pools and evaporates away from a central core, absorbing into the air with not much leftover at the original site. That would be ideal. Of course, sometimes the cube melts in some kind of fault line and a chunk will fall off from the original to be absorbed separately. If this happens, the chunk will go...somewhere. If such a chunk goes out his new aortic arch, it could find its way into his brain and cause serious problems. If such a chunk goes into his shunt, it could clog the whole works and cut off blood supply to his lungs...
The short version is this: the only viable way to treat this problem is with antibiotics. Which may work. But they may not. Or they may work in a way that causes more harm. Surgery could correct it, but due to risk level they will not schedule any before the natural progression of the planned Glenn surgery. If he can hang on until then, a surgical repair may be possible. We're just hoping that (for once!) he follows the rules, and his body allows the antibiotics to work as they are supposed to, to dissolve the glue holding the mass together and letting the rest melt into thin air.
Sigh...more long nights and no sign of going home again. We've been told anywhere from 3 days to 6 weeks. Will post again when we know something new. In the meantime, I can hear our little boxer grumbling post-diaper-change. Good night all. And CT, sorry I missed you. I was really looking forward to seeing you; it would have been nice to come back today. Soon maybe...
Friday, April 29, 2011
Hello-ello-lo-o-o...
Hello all. Apologies all for the long delay. We’ve not been keeping radio silence for any particular reason; call it overwhelming-ness-itude (not sure what the noun form of that word is). It turns out that this parenting thing takes a crazy lot of energy, and things that are not truly essential tend to get done “later.” And frankly, from us silence is a good thing. It means no news. Dullnes. Which, if you’ve read earlier entries and a later part of this one, is a very good thing. At any rate, later has become now, and there are so many things to tell! I’ll explain…
It always amazes me how the smallest things just seem to take on a life of their own and grow and grow. Back in November, for my wife’s birthday, I bought her a baby blanket from Babies ‘r Us. We’d only recently been given the HLHS diagnosis, and it seemed important to give some sort of token that emphasized our commitment to Wolfie. A baby blanket seemed like a good idea. Simple. Meaningful. At the time, I had no idea how such a small decision as “which blanket should I buy?” would have such substantial echoes. It turns out that by selecting a blanket, I had inadvertently chosen an entire theme for the baby’s room! Who knew?! I just liked the colors. So sure enough, after the baby shower and after putting together our nursery last week (bye-bye video game room), I began to understand what choosing a baby theme meant. Everything…no, really—E-V-E-R-Y-T-H-I-N-G matched that first blanket I chose. Just a few cute animals in a boat. You know, a giraffe, an elephant, a lion, a monkey…yep, you guessed it: Noah’s Ark.
So did I mention echoes? Small things assuming more and more importance as time goes on? On the positive side of these echoes, we were discharged earlier this week! On Monday to be precise. Coincidentally, after exactly 40 days and 40 nights, Kristin, Wolfie, and I got to go home. We got to experience all the beautiful, horrible elements of parenthood: enjoying the beginnings of intentional smiles, watching the baby meet the kitties, loving beautiful eyes, getting zero sleep, fearing we would screw up Sam’s meds or his personality, wondering how we could get up and do it all again the next day. It was both painful and lovely.
On the negative, we are back in hospital as of this afternoon. For two whole days we were free! But today, during a “routine” follow-up appointment, the cardiologist came in after viewing Sam’s echo and said, “I’d like to show you a few pictures.” We didn’t bother to feign surprise when, after showing us the images, she said Sam needed to be re-admitted immediately.
Wolfman has…well, something-that-isn’t-supposed-to-be-there-and-wasn’t-there-in-the-last-echo-two-weeks-ago growing on the inside of his heart. To borrow an understated phrase from one of our physicians, “This is very dangerous.” This something has evidently gained the attention of just about every cardiologist or cardiac intensivist in the hospital. And believe me, the last thing you want if you have a child in the hospital is to have doctors who are not assigned to your case to suddenly become…interested. Doctors’ lives are crazy, and they have no time for extraneous workload. Ever watch House? It may be wildly unrealistic in some ways, but they got one thing right: interest means mystery. Interest means rare or dangerous or more likely both. As of now, these other docs are not interested because of what they think it is: either “vegetation” created by an infection (endocarditis?) or a blood clot that has attached itself next to the tricuspid valve in the right side, the working side, of Sam’s heart. They are interested because of the relative size of the growth. Evidently, it is quite large. Which means that, whether it is clot or infection, if part or all of it somehow comes loose, it could flow to various parts of the body and…well, that would be bad. Tomorrow (now today, as I finish writing this at 6:30 in the morning), they will perform at least an MRI and possibly a CAT scan to see if any clots have broken off and lodged in his brain. That means stroke. Hopefully, we will know more before long. We will wait and see.
Finally, you may wonder what this second part has to do with Noah’s ark. 1) The echo. In the same way the blanket and its significance grew on its own, so has this something. 2) Bill Cosby. A long time ago he did a fantastic sketch describing a conversation between Noah and the Lord. It’s worth listening to: CLICK HERE. One of the great lines from it occurs when a neighbor wants a hint from Noah about what the ark is for. Noah says, “You want a hint? How long can you tread water? Hahahahahahaha.” Later, Noah starts complaining about all the work he’s doing and how he’s sick and tired of it all and isn’t gonna do it anymore. In response, the Lord simply says, “Noah! How long can you tread water?” Classic. On the other hand, I wonder.
I won't say anything more on it now, but, frankly, we are worried. Still...as our little blanket reminds us, we are also committed. And that means, until it is time not to be, we will remain hopeful.
As always, thank you for hoping with us.
Wednesday, April 20, 2011
Micro Update
It's Jason. Trying to keep this super brief. Because there's so much to tell about the last couple days, I (or Kristin) will need a pretty substantial entry to encompass it all. On the other hand, I know people want to know how we're doing. So...until we have time to elaborate in a more substantial entry, here's the most important stuff.
The last few days have been long and drama-filled. Nonetheless, Sam is recovering pretty well.
1) He's more alert than ever; they even canceled his home PT because his developmental markers all look so good!
2) His G-tube site looks good and appears to be functioning properly. Now he's able to take his feeds in an hour or less. Also, with his reflux effectively stopped, his vitals (including his oxygen sats and heart rate) have been much, much more stable.
3) His last heart echo looked great.
4) He is entirely off oxygen support, and the doctors have started weaning some other meds (specifically Lasix).
5) I almost don't want to say this for fear of jinxing it, but the word "discharge" has been ringing in the air. And this time they are not talking about messy diapers. Nothing has been decided yet, but we are hopeful...
6) In the meantime, Kristin and I are getting a crash course in caring for a cardiac baby with a G-tube at home...by ourselves...a great stress to have.
That's the most important stuff for now. Will fill you in on the details when I have more time and energy. Right now, Sam's binky has fallen out of his mouth, and I have the honor of retrieving it for him for the umpteenth time tonight. :) Night all.
Until next time, Sam says, "Phlbtttth!"
The last few days have been long and drama-filled. Nonetheless, Sam is recovering pretty well.
1) He's more alert than ever; they even canceled his home PT because his developmental markers all look so good!
2) His G-tube site looks good and appears to be functioning properly. Now he's able to take his feeds in an hour or less. Also, with his reflux effectively stopped, his vitals (including his oxygen sats and heart rate) have been much, much more stable.
3) His last heart echo looked great.
4) He is entirely off oxygen support, and the doctors have started weaning some other meds (specifically Lasix).
5) I almost don't want to say this for fear of jinxing it, but the word "discharge" has been ringing in the air. And this time they are not talking about messy diapers. Nothing has been decided yet, but we are hopeful...
6) In the meantime, Kristin and I are getting a crash course in caring for a cardiac baby with a G-tube at home...by ourselves...a great stress to have.
That's the most important stuff for now. Will fill you in on the details when I have more time and energy. Right now, Sam's binky has fallen out of his mouth, and I have the honor of retrieving it for him for the umpteenth time tonight. :) Night all.
Until next time, Sam says, "Phlbtttth!"
Monday, April 18, 2011
Longer G-Tube/Nissen Surgery Update
Hello, it's Jason. Sorry about the delay everybody. As you may have realized, days involving any kind of procedure get pretty wild pretty quickly. Here are some pictures to give you a sense of the day's arc, from build-up to recuperation.
The calm before the storm. Otherwise known as "mama time":
The Continuing Saga of the IV: We may have mentioned before that Sam does not take poking well. Once they had the IV placed yesterday, they had to wrap it up to protect it from being "unintentionally removed." Here, I think he either looks like IronMan (check out his arm cannon) or maybe some sort of gangsta (just picture a cigar instead of a binky "Hey Spike, get this thing out of me or you'll be swimming with the fishes").
Consent: As this is a teaching hospital, we made sure to verify that the attending surgeon would actually be the one performing operation before we signed any forms. Call us paranoid, but when our cardiologists say this is the guy we want doing the cutting, we listen.
Surgery: It took a little longer than expected, not because of the surgery itself but, as I mentioned, it has proven very difficult to poke him effectively. Translation: it took a while to get an arterial line placed. As for the surgical component, the surgeon said, "He seemed to tolerate it pretty well." It's no "Rock solid," but I interpret that as surgeon-speak for "Everything went as well as we could ask."
Recovery: And finally, we are now in the CICU waiting for Samuel to recover enough from the anesthetic to effectively breathe on his own. Once he does, they'll extubate him, and we will likely be headed back up to the CPCU sometime tonight. Until then, thank you as always for your good thoughts and good wishes. Hopefully, the next time we post, the ol' Wolfman will be tube-free (except for the G-tube), and we'll be getting ready to go home! Until then, here's the poor little sedated guy. He says, "Every time I go to sleep, I wake up with another attachment! Stop it already!":
The calm before the storm. Otherwise known as "mama time":
The Continuing Saga of the IV: We may have mentioned before that Sam does not take poking well. Once they had the IV placed yesterday, they had to wrap it up to protect it from being "unintentionally removed." Here, I think he either looks like IronMan (check out his arm cannon) or maybe some sort of gangsta (just picture a cigar instead of a binky "Hey Spike, get this thing out of me or you'll be swimming with the fishes").
Consent: As this is a teaching hospital, we made sure to verify that the attending surgeon would actually be the one performing operation before we signed any forms. Call us paranoid, but when our cardiologists say this is the guy we want doing the cutting, we listen.
Surgery: It took a little longer than expected, not because of the surgery itself but, as I mentioned, it has proven very difficult to poke him effectively. Translation: it took a while to get an arterial line placed. As for the surgical component, the surgeon said, "He seemed to tolerate it pretty well." It's no "Rock solid," but I interpret that as surgeon-speak for "Everything went as well as we could ask."
Recovery: And finally, we are now in the CICU waiting for Samuel to recover enough from the anesthetic to effectively breathe on his own. Once he does, they'll extubate him, and we will likely be headed back up to the CPCU sometime tonight. Until then, thank you as always for your good thoughts and good wishes. Hopefully, the next time we post, the ol' Wolfman will be tube-free (except for the G-tube), and we'll be getting ready to go home! Until then, here's the poor little sedated guy. He says, "Every time I go to sleep, I wake up with another attachment! Stop it already!":
Update #1
Sam was taken to surgery about an hour ago. He was wide awake and hungrily sucking on his pacifier as we wheeled him in his crib from the 9th floor to the 2nd floor. He seemed unphased and happy as anesthesiology started to prepare him for his operation.
No real updates yet, but we're hoping he'll be out of surgery in about an hour. We will continue to keep you posted!
No real updates yet, but we're hoping he'll be out of surgery in about an hour. We will continue to keep you posted!
Sunday, April 17, 2011
Mini Update
Sam's surgery has been moved up from 4:45 pm to 9:30 am tomorrow. Good luck, Sam! We will post updates.
Also, good luck to our friend Jeff, who will be running (like the wind) in the Boston Marathon tomorrow.
Also, good luck to our friend Jeff, who will be running (like the wind) in the Boston Marathon tomorrow.
Friday, April 15, 2011
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.
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.
Thursday, April 14, 2011
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.
Tuesday, April 12, 2011
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!
Friday, April 8, 2011
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.
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.
Tuesday, April 5, 2011
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!
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. :)
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!
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