movin' on up...

to the east side!

To deluxe apartment in the sky!

-Theme from "The Jeffersons"

Greetings from 6East .. the Cardiac Care Unit! (Note there's no "intensive" in the name - wahoo!) We have moved to step down, and we're happily getting settled into our new digs. Sorry we didn't give you any advance notice about this major change. Oh, wait - that's because we didn't know ourselves until today. We had a hint that he was one of the healthier kids in the CICU, but they didn't give us the A-OK to head to step down until about 15 minutes before they were ready to move him. And then, it took 6 nurses (no stretch - it really took six of them!) to help me load up all the cards, pictures, and door decor; the piles of forbidden snack food we had surreptitiously hidden under the bed; the books and toys we'd spread over every flat surface in the room. It was quite a scene we made as we trekked over from the west side to the east side with our stuff overflowing the little red wagon Jay's been riding in.

But we're now busy figuring out how things work on the good side of the hall - how to order Jay's own meals, finding the secret stash of cookies in the nourishment room, how to call the nurse. It's SO much quieter around here - they have a different monitor, and its beeps are far less scary-sounding than the ICU beeps. Or maybe that's just my imagination...

Here's the view out our room - these cool colored glass panels cover the whole front of the hospital, and our room looks right through them. It's gorgeous.

One thing that is louder is the Life Flight helicopter. You can actually hear it coming and going now as it lands on the roof of the CICU unit. (Apparently the staff elevator actually goes right up to the helipad!) Jay will love to hear it if he ever decides to wake up from his coma ... er, morphine-induced nap. Seriously, it's just a nap - but it's a really good one.

And, in the "Things the Fosters REALLY Didn't Need Right Now" department, we're down one pair of hands. Derek woke up at 3 a.m. last night with a seriously upset stomach (fan-freakin-tastic timing, right?!), and we decided to quarantine him. Because the Ronald McDonald House does not allow sick people there (understandably, since they see so many immune-compromised kids/families), he got the boot from there too. One stomach bug, and poor fella is suddenly homeless and no one is willing to come within 6 feet of him! But RMH gave us a discount voucher at the Sheraton down the road, and I took advantage of Jay's naptime to shuttle him from one venue to the other. He's currently getting settled into his new digs, and hopefully he can sleep it off in a day or so.

So, while I don't want anyone to stop praying for Jay's continued healing, would you mind sending some good thoughts for Derek too? If we couldn't laugh, we would all go insane. And someday, we'll look back on this whole time with a big hearty chuckle.

But I would not feel so all alone...

Everybody must get stoned.

--Bob Dylan, "Rainy Day Women #12 and 35"

So apparently in the past couple weeks they have turned our sweet, innocent Jay into a junkie. A couple weeks of constant infusions of morphine and midazolam will do that. Midazolam (Versed) is Valium's big brother (and known as "Dazzle" if you want to get some on a back alley somewhere). To keep him comfortable, he got pretty high doses of both while he was on bypass and the vent. Now that he doesn't need them any more, they are trying to slowly decrease them without causing withdrawal symptoms. The shaking, sweating, and anxiety of withdrawal is not what his heart needs right now. Vomiting and diarrhea are also symptoms of withdrawal, so it is a little hard to know if last night's problems were due withdrawal or something else. We're hoping they can continue decreasing both of these because we can't leave until he's kicked his habit.

Otherwise, today was a rather sleepy day. After playing this morning and working with the physical therapist, he napped for an hour or two. On the PT front, he is doing quite well with his upper body and trunk strength and balance. His skinny little legs have gotten skinnier, and are still too weak to stand. He tried harder today than yesterday, and if he keeps it up, Jay'll be back on his feet in a couple more days.

The afternoon agenda included another wagon ride and chocolate pudding. Oh, and chocolate ice cream, courtesy of our fave Dr. BJ. That soft spot in her heart for our lil' guy seemed to get bigger when he blew her a kiss. ;-)

Jay hasn't had anymore vomiting or poop, so tonight he's getting prune juice through his NG tube. He is continuing to eat pureed fruit too. He is especially excited about eating since he got a really cool front end loader spoon (http://www.constructiveeating.com/) from some friends in the pharmacy at the vet school. Pureed food, prune juice, and coumadin--sounds like a 72 year old instead of a 2 year old!

I get knocked down...

...but I get up again

you're never gonna keep me down!

-Chumbawumba, Tubthumping

Yesterday was a fantastic day, and in the way that all good roller coasters do, every high peak is followed by a bit of a valley. Apparently all the up & moving around + getting more food in the belly + switching to oral meds + ongoing lack of poopage (sorry, TMI!) = not feeling so good in the tummy. Jay's poor belly is seriously swollen, and let's just say that he had upset tummy from both directions. Between the time our poor nurse, C, came on duty at 7 p.m. and 9 p.m., Jay's sheets were changed 3 times. You know that girl was wishing a little of the puking and pooping had come on day shift! It was pretty clear that the upset tummy made for an upset Jay - he felt pretty cruddy. But we put on some soothing music and he eventually drifted off. He had another middle of the night episode, but they cut his feeds in half and decided to give his oral medications very slowly. So he did get some rest during the night and is currently still sleeping.

I have to give a shout-out to my dear friends M. and A. for suggesting the blog intro song. It was one of my favorite one-hit-wonders from my college days. And while it's mostly about not letting a hangover get to you, I'm embracing the attitude - I'm not going to let one minor setback bring me into a funk. When we have a down day, we're going to get up again and wait for the next good day.

Today, we're also saying goodbye to my dad, AJ, and Granna as they head back to NC. My mom (LaLa) is going to be on Luke-duty this week at RMH, and she's super-stoked about getting to spend so much time with that toothless grin. (Let's just hope he stops showing his less-cute side at 4 a.m.!) We have really enjoyed their all-too-brief weekend visit - but, hey, they picked a great time to be here.

Hitchin' a ride...

Hitchin' a ride

gotta get me home

to my baby's side

Ride, ride, ride

Hitchin' a Ride

-Vanity Fare, Hitchin' a Ride

Sorry for the lack of updates lately - it's been a busy couple of days. After a small step sideways with some breathing trouble, Jay is now making big leaps forward again. Yesterday afternoon he switched back from the CPAP to the high-flow nasal cannula and seems to be tolerating it very well. He's still got junky lungs and an icky-sounding cough, and his chest x-rays still look pretty yucky. He's still got a fever, so the infectious disease folks are more and more certain that he's got pneumonia rather than an infection from one of his central lines. While pneumonia certainly isn't good, it's far better than a central line infection - it's likely treatable with oral antibiotics rather than the six week IV infusion that was promised. (Is that one complication that we have sidestepped?!) Still no official word, but things are looking better than we thought initially.

Jay is also getting more and more food. He has had a variety of pureed fruits, oatmeal, and even some hummus for lunch. Between the food smoothies and the formula through his feeding tube, they have turned off his IV nutrition. He is also off all heart support drugs--still on amioderone for the arrhythmia (again it's going to be a while for that one). Almost all of his meds have been switched to oral meds, and they are hoping to take out his PICC line tomorrow.

But for the song lyric connection, Jay got to leave our humble CICU room for a wagon ride today. In the same way that our first outings when we brought him home as a newborn required loads of stuff, this journey was quite a production. His much-adored AJ hauled the portable oxygen tank, the nurse pulled the IV pole with his 6 remaining pumps (down from a high of more than 15!), his daddy pulled the wagon, while Granna and Popper took pics like the paparazzi. Quite a scene they made! But they took 2 laps around the whole CICU, and even headed out to the bridge where they could look out the windows. Jay seemed quite happy to see something other than those same 4 walls.

Jay is quickly regaining his construction abilities. This morning he sat up on his own for 20-30 minutes playing with his tools. Sitting up and balancing is a big step on its own. He is also slowly regaining his hand-eye coordination and arm strength.

Talking is still a lot of work for him, but he is improving each day. He will mouth words and give a faint whisper, but he won't really vocalize anything. Two weeks with a breathing tube will make the ol' throat a bit sore. Vocal cord paralysis is a potential problem, and one he experienced with his first heart surgery as an infant. It usually resolves on its own, but we hope this is just a sore throat not something more serious.

We're guessing that he's still a week or more from the step-down unit, but he's been making such great (and FAST!) progress over the past 2 days, he could surprise us again. It's been a great couple of days.

Well, it's alright...

...even when push comes to shove.

Well, it's alright, if you've got someone to love,

Well, it's alright, everything will work out fine.

Well, it's alright, we're going to the end of the line.

--Traveling Wilburys, "The End of the Line"

Since I'm a big Tom Petty fan, and I also like Roy Orbison and Bob Dylan, I've always liked the Traveling Wilburys, especially this song. I've tried to work it in as a blog title before, but Jen hasn't gone for it. She's off getting some time with Luke and a nap, since last night was kinda long. So you're stuck with me and my song choices.

The end of the line I'm talking about today is the end of Jay's IV lines. Now don't get too excited, he still has an arterial line and a PICC line (a long catheter that goes from about his elbow up the vein to almost his heart) and 9 different IV pumps. He has had trouble maintaining a peripheral IV line. He's had three different ones in his right arm and one in each foot. With each one he keeps getting phlebitis--inflammation of the vein--sometimes as quickly as 24 hours after it is placed. One of the drugs he is on (amioderone) to control his heart rhythm is extremely irritating to the vein. Ideally it would be given through his PICC line so it would go into a large vessel, but he already has too many other things running through that line that have to go there. So he has to get this drug through the small peripheral IVs. Today they came to put in another one, and realized that they didn't have anywhere left to place one. So no more catheters in his hands, arms or feet.

Coincidently, the docs are weighing how much to feed him by mouth, and if they can switch some of his IV meds to oral. Fortunately, amioderone comes in an oral liquid as well, so after a consult with the electrophysiology team (heart electricians), he is going to be getting this through his nasogastric feeding tube. We have asked how long he will need this drug, since he only had a brief period of arrhythmia and had no heart rhythm issues prior to his surgery. The answer we got was (more or less), "Until someone has the cajones to stop it." Based on how bad his arrhythmia was, that's going to be a while. By the way, here's a photo of his ECG from that night.

And there's about 30 feet of paper that looks pretty similar. So, yeah, he's going to be on amioderone for a while.

Since they are now thinking about giving him some food orally, he got a visit from the speech therapist to check on his ability to swallow. We quickly became fans of her because she graduated from NC State, and her parents live down the road from us. Jay became an even bigger fan when she broke out the applesauce. He can't drink liquids real well yet (the CPAP forcing air through his nose doesn't help), but he did great with the applesauce. No coughing, and he opened his mouth to ask for more. Tomorrow, she promised guacamole.

This afternoon, he did try to talk some more, and we got both a "Daddy" and a "Mommy." Even better, he smiled. A real, toothy, two-year old smile. Credit for the smile goes to both Jen's coworkers who sent up some toy tools (along with a wonderful box of additional goodies--Thanks!) and my mom. He reached out to get tools, and with some encouragement pretended to saw off Granna's (my mom) finger. When her finger disappeared, he smiled. We couldn't help ourselves--we had to do it over and over again.

It is amazing how much of a roller coaster this is for me and Jen. Yesterday, in spite of getting Jay off the vent and getting to hold him, I just couldn't feel positive. I was going to write a blog post, but the only songs I could come up with were "Comfortably Numb" by Pink Floyd, "I'm Tore Down" by Eric Clapton, or "No One Ever Told Me" by John Lennon. I couldn't help but think about all the additional hurdles Jay has. Most of that seemed to come from a lack of sleep (we were up all night the night before since they extubated him at midnight) and too much time hanging out in the CICU. The gloomy rainy weather for the past several days didn't help either. After getting out to the RMH, getting a good night's sleep, hanging out with Luke, and seeing the sun again, I'm in a much better mood. That smile didn't hurt either.

Rise and fall, turn the wheel...

Cause all life is,

Is really just a circle.

--Big Head Todd and the Monsters, "Circle"

With anything in the ICU, it can be two steps forward and one step back. Or three steps forward and two sideways hops. An occasional swing your partner do-si-do. All night dance party in CICU room 10! But we're having one of those side steps, going in circles kind of days.

Last night, Derek went back to the house for some MUCH needed rest. He has not slept in a big boy bed since Jay's surgery on 8/11. That's a lot of nights on a couch or sharing a tiny cot with me. I took hospital duty last night, and I now realize why that's usually Derek's job. He handles that kind of thing far better than I do.

Nothing horrible has happened, but we're not exactly making forward progress either. After coming off the vent, Jay went onto a high flow nasal cannula (which you could see in the picture posted yesterday). Last night, he seemed to be having a little trouble breathing, so they switched him to a CPAP machine, which helps to force a little more air into his lungs.

No one seems willing to commit to a particular diagnosis beyond "junky lungs." I swear, if they can't come up with some crazy technical sounding term, they just pull a random word out. (When Jay was having v-tach episodes, the doctor described his heart as "sparky." I couldn't make this stuff up.) Some think the junky lungs are from ventilator-associated pneumonia, some call it roving atelectasis (similar to a collapsed lung), some believe it to be bruising from the trauma of 90 minutes of chest compressions during CPR. Whatever the root cause, the treatments are the same - lots of pounding on his back to loosen the junk, forcing more air in to open up those little alveoli, and lots of moving around to keep junk from sticking in one spot too long. He is not really a fan of any of these.

The jury is still out on the central line infection as well. He hasn't had any further fever, but there is discussion of keeping him on heavy duty antibiotics (vancomycin) for six weeks (yes, I said SIX). No taking the pink stuff home in a bottle, folks. Six weeks of IV antibiotics. In the hospital. You're freakin' kidding me! Nothing is certain yet, but that's on the table. We just don't want any infection latching onto his snazzy new heart valve.

Speaking of the snazzy valve, we're working on switching him from one blood thinner (heparin) to what he'll be on when he goes home (coumadin). Coumadin is only taken orally, so we've got to get him eating to be able to get it into his belly. And no one wants him aspirating anything, so they don't want him taking food by mouth. Do we crush it up and send it down his NG tube?! Regulating his levels of heparin has been a roller coaster ride - tiny tweaks in his dosage mean giant swings in his bloodwork results. So, if we're going to ride the Coumadin Coaster, might as well start now.

Sorry if I'm a little less upbeat than I have been - things aren't all bad. In the good news department, Jay was able to sit up with support and was holding his head up very well on his own. He's tried to say "Daddy!" which appeared to mean "Daddy, make them stop doing this stuff to me!" He's becoming more alert and nodding/shaking his head. So we're getting little glimpses of our old Jay, and that does a heart good. A mom's heart, anyway.

After midnight...

...we gonna let it all hang down

-Eric Clapton, "After Midnight"

In yet another attempt to prove that folks here at CHOP are running a round-the-clock operation, they decided to take Jay off the ventilator. Tonight. They'd been discussing it all day and kept finding reasons to wait (possible central line infection, placement of a PICC line, get steroids in him first, nurse needed to go potty first ... okay I made that last one up.) But the waiting is over, they did it, and the lil' man is breathing on his own!!! Like coming off ECMO, this is a giant, huge, scary step. But so far, he's doing great with 02 sats still in the mid-90's and blood pressure close to the goal. Hooray!

I had gone back to RMH (and yes, I stamped a couple of cards!), but when they decided for sure they were going to do it, I decided to come back to the hospital. It was a little deja-vu-ish to be coming back here in the middle of the night and walking in to find a crowd of people clustered around Jay's bedside. The night of his arrest will haunt me forever, and a number of the same people who saved his life then were here tonight while he came off the vent. And actually, that was somehow comforting. The folks who were doing chest compressions two weeks ago were watching over and cheering him on tonight. The same doc who intubated him on that awful, horrific night was the one who removed the breathing tube. And she was wearing his hammer silly band alongside the very rare blue hippo that her son (also named Jay) gave her. She's got a very special place in our hearts.

Derek was able to be right beside him, holding his hand, while they extubated. I was curled up in the corner, praying with everything I had. For the first time in more than 2 weeks, we've been able to hold him. He's currently snuggled comfortably in his daddy's lap. It's a beautiful sight.

We are NOT CLOSE to being out of the woods. As with any big change, the first few hours and days hold the biggest risk. So keep praying that he is able to keep breathing on his own, and that his heart is able to handle this additional challenge. But for now, we're very happy to be up in the middle of the night.

Don't matter where you are, everybody, everybody gonna need...

Need some kinda ventilator, some kinda ventilator.

What you gonna do about it, what you gonna do?

What you gonna do about it, what you gonna do?

Gonna fight it, gonna fight it.

--Rolling Stones, "Ventilator Blues"

I thought this was the perfect song for today - then Jen said she'd never heard it, so perhaps it wasn't quite so perfect. But since she's given me blog author privileges, I'm going with it.

There's still an ongoing discussion of whether Jay will come off the ventilator today. Some docs think he's ready, and others are not so sure his heart is ready for that step. Folks have asked why he is on the ventilator since the problem is his heart. Well, the first day of cardiology in vet school, we learned the basic principle on which all cardiology is based:

Air goes in and out

Blood goes round and round

Oxygen is good

With that in mind, air going in and out is really the first step, and the function of the heart is hugely impacted by the function of the lungs. If the lungs don't bring in enough oxygen, his heart has to work harder to push the little bit of oxygen around faster. So the ventilator in his case is supporting his heart by maximizing his oxygenation.

Right now, the ventilator is set to breathe 8 times/minute and Jay is currently breathing 20-25 times/minute. So the vent is supporting him, but he's also breathing on his own as well. That's good, but we want to be sure he will keep it up. The respiratory therapist described his current vent support as a 4/10 with 10 being complete support. He also appears to have some swelling in his trachea from the breathing tubing being in place for the past two weeks. Some docs will wait an addition day to take them off the vent to try and decrease that swelling, while some don't. We're not sure which camp Jay's doc is in, but should find out shortly in rounds.

In other news, the hole they created between the atria has now closed on its own. It's supposed to do that when his ventricle gets stronger, so that's good news. He won't have to have a surgery later on to close it, so check off one potential future surgery from his list. Woohoo! The gunk in is lungs also appears to be getting better based on what they are suctioning out and his x-rays.

Hopefully, by this time tomorrow he'll be able to talk to us and tell us what he really thinks about all this.

Our house...

...is a very very very fine house

with two cats in the yard

life used to be so hard

-Crosby, Stills, Nash & Young "Our House"

I mentioned a few days ago that we've moved to the Philadelphia Ronald McDonald House, but haven't given y'all much detail. "The House that Love Built" is indeed a very very very fine house. (No cats here, but I've got a couple in Raleigh that I'd love to put out in the yard...)

There are more than 300 RMH homes worldwide, but ours here in Philly is the first. It's a gorgeous old mansion, and some of the family rooms are actually original to the house. There is also a large, modern addition to the house with additional family rooms, and we're in the newer part. So while we don't get the gorgeous 12 foot ceilings and parquet wood floors, we do get our own bathroom. That's particularly useful for the unending washing of bottles and pumping parts. Ahhh, just a little slice of "regular" life.

The rooms are fine, and fairly similar to a hotel. We have 2 double beds, so Jane and I each get our own. (Derek's staying here in Jay's room.) But that's about the end of the similarities to a hotel. In many ways, it's like staying in someone's home. There is a GIGANTIC kitchen with ... hmmm, lemme count ... at least 5 huge, commercial size fridges. They have one fridge that is stocked solely with individual size milk cartons from a local dairy. (I do kinda feel like I'm elementary school again, drinking straight from a little carton!) Each family gets a locked cabinet for food you brought and a bin space in one of the fridges. But you really don't need it because there are cabinets upon cabinets completely stocked with anything you could possibly want to eat. Dinner is provided each night by "guest chefs" who come into the house to prepare a meal. Then, any leftovers from the meal are put into the shared fridge for people to eat the next day, to take to the hospital, for middle of the night baked ziti attacks ... you name it, you can eat it. Just clean up after yourself and put your dishes in the dishwasher.

There are laundry facilities, and Granna has been washing the endless mound of bibs & burp cloths that Luke drools all over. There are drink machines with bottled Cokes for $.25. When was the last time you put in a quarter into a drink machine?! There are movies to borrow and watch in your room, playrooms with toys for all ages, lounge areas to hang out and meet folks, and shuttles to get you back & forth to the hospital. There is a great deal of programming as well: tix to Phillies games, discounts and passes to area museums, therapy dogs coming to visit, a knitting group. (To my crafty friends, there's a Stampin' Up party tomorrow evening, and you can bet I'll be there. I have many thank you cards I need to make...!)

Like so many other things, it's as wonderful as it can be, given the circumstances we're under. But I still wish I didn't need it.

Jay's had a very stable day. He seems sleepier than usual today - he may still be feeling kinda cruddy from the fever. And I need to remember that he's on a healthy dose of morphine which is keeping him very groggy. They've tweaked his ventilator settings in preparation for coming off tomorrow ... though it depends on who you ask whether that will really happen or not. The echo from this afternoon apparently looked really good - and not just to our untrained eyes. His primary cardiologist here is Echo-Experto, and she said she's not just impressed with the progress but genuinely pleased with how it looks. Happy news, for sure.

Now, I'm off to eat my RMH dinner, delivered courtesy of dear Derek who's been taking a break from medical world to go back & eat with Luke. Wonder what we're having tonight?!

I was born a rebel...

Down in Dixie,

On a Sunday mornin'

--Tom Petty, "Rebels"

So apparently Jay was listening last night after my post, and decided to be a little rebel. On the bright side, his blood pressure went up, so the docs have now taken him off dopamine (one of the drugs supporting his heart). They started tweaking overnight, and this morning they stopped it. So far, he is tolerating that just fine. He also had a poop, (hallelujah!) so he is now getting a bit more food through his nasogastric tube. The plan is to slowly increase it each day, and decrease his IV nutrition.

On the not so bright side, his fever came back. So he's in for another round of cultures and a couple more days of antibiotics. They are culturing the gunk from his lungs, his urine, and blood from each of his IV lines (jugular vein, artery in his arm, vein in his other arm) to see if they can find the source of the infection.

Fevers are a big deal - with so many lines in, the risk of infection is high. With the last fever, they considered that going off iso can cause fevers (along with the shakes he experienced). This time, we have no explanation other than infection, but we're hoping to catch it before it becomes a bigger problem. His arm around his IV looks a bit red and swollen, so that IV came out. We hope that is all it is.

They are also halfway through doing an echo of his heart function. They started, and then got called away to do an echo for a child in surgery. While I can read an echo just well enough to be dangerous, even I could see that his heart function looked better than the one last week. We expect them to come back to finish this afternoon and then get some results a few hours after that. Hurry and wait, hurry and wait...

Unless our little rebel has other plans, they hope to wean him from the vent in the next 24 hours. Again, that would be another HUGE step, especially when we're asking him to breathe with lungs full of junk. So, pray that goes smoothly ... one breath at a time.

Tommy can you hear me?

Can you feel me near you?

--The Who, "Tommy can you hear me?"

Don't worry we are not intentionally keeping you on the edge of your seat by withholding updates on Jay. It is just there is only so much we can write about beeping (all the pumps and monitors) and sleeping (Jay).

Overall, Jay is about the same as yesterday. They did not tweak any of his meds down today, but being Sunday, I don't think there is a big rush to do too much until tomorrow. His blood pressure is a bit lower today than yesterday since decreasing some meds (another reason to not tweak them further), but it's still in the acceptable range. His heart rhythm is normal and he hasn't had any more fevers. After increasing his heparin dose once or twice a day since coming off ECMO, he is finally at a therapeutic level for his heart valve.

He does have a couple lingering problems. He has an area of his lungs that is not inflating properly on the ventilator. It could be due to his breathing tube being a little malpositioned (though they have moved it about 4 times to make it better), or the gunk that builds up in his chest just from being on the vent. With chest physical therapy (aka the jackhammer), changing the vent settings, and position changes, it seems to be getting better, but isn't gone yet.

His other problem is in the pooping department, and the problem is that there isn't any, and hasn't been any since surgery. That's a week and a half without pooping. Granted he hasn't been fed much, but he has been getting some food through a feeding tube since surgery. So far miralax, colace, and suppositories have all failed. We keep hoping that the next time they take his temperature, he's going to break forth, but so far no luck.

Jay is spending most of the time sleeping and will periodically open his eyes to look around when the nurses are doing things with him. He also will sometimes respond to commands. Considering he's two, listening some of the time is pretty darn good. He will open his mouth when asked to allow the nurse to suction the gunk that builds up in his breathing tube. He hates it, but he will do it when asked. Today the nurse asked if he wanted to be suctioned again, and he feebly shook his head no, buying himself a brief reprieve.

We can get a finger squeeze periodically if we ask, and occasionally see glimpses of the old Jay through the sedatives and morphine. This afternoon, we were reading one of his new favorite books, Duck on a Bike (Thanks David B.!). For those of you not familiar with the book (if you have small kids, you need to get it!), the duck rides by all the farm animals and they respond "Moo," "Baa," "Neigh," etc. These are Jay's lines, so I paused each time to see if he would try. I got nothing on the cow or sheep, but when I got to the dog, he mouthed "Woof." Later, I went to tuck Cow Lovey under his left arm, and he got quite upset and pushed him away. I asked, "Do you want Lovey under your other arm?" and got a weak nod. So I put him under his right arm, and he immediately grabbed his little fuzzy hand and gave it a squeeze. That's where Lovey is still sleeping, and hopefully they have a quiet night together.

He ain't heavy...

...he's my brother

and the load

doesn't weigh me down at all

he ain't heavy

he's my brother

-The Hollies, "He Ain't Heavy (He's My Brother)"

Happy half birthday! Six months ago today, Luke entered our lives and forever changed our family. The week he was born, Jay came down with a cold which quickly morphed into the worst of his 5 pneumonia episodes. So very early on, we began learning how to balance the needs of two kiddos. I wasn't sure how I could ever love a second child as well or as much as I loved my first.

In our family, we sign notes with "LYTB" which means "love you the best." We joke about who is loved the best, while knowing that we are all loved completely. Appie (my grandmother) used to say that she always loved best the one who needed her at that moment. That never made much sense to me until the last few weeks. It doesn't mean that I love Jay more ... it just means that the best of my love and my attention is currently focused on him - because he needs it. It's LYTB, not LYTM.

But yesterday afternoon, I headed over to RMH for some much-needed time with my baby. I've been trying to spend some time with him at least once a day, but all too often it's "Here's some milk, now I'm headed back to the hospital." Last night, we ate dinner together, we explored the house, we unpacked our stuff, we played with some toys and rattles. Giggled at each other. Pseudo-normal stuff.

He's doing great, in spite of the lack of attention from Mommy. In fact, he's probably happier because of it - he's been uber-spoiled by THREE grandparents who are more than happy to do whatever he wants. Even now that he's down to just one grandparent in town, he's staying very-well attended to!

He's finally learning to roll over. Six months is pretty late - Jay was rolling both directions at 3 months but Luke is just completely content whether you lay him on his back or his belly. He's actually thinking about trying to crawl and has gotten his knees under him and scooted a few times (though he usually moves backwards!). What baby crawls before they can roll over?! He's getting over his cold - though there's still no chance in hell we're bringing him to the germy hospital. He has been struggling with sleeping - probably because he's waking himself up coughing, but he slept through the night last night. It was much needed rest for us all.

Since being in Philadelphia, Luke has tried several new foods and, like his big brother, seems to be a BIG fan of whatever you put in front of him. He's had sweet potatoes, squash, green beans, peas and carrots. He is already moving on to semi-solid foods. At this rate we may scoot on past stage 3 baby foods and just start mushing up what we're eating!

So, Luke, I am so very sorry that I can't spend every waking minute with you. Thank you for being such a laid-back, easygoing kid and rolling along with all the craziness that's come into your life lately. I hope you turn out to be just as easygoing when you grow up ... and I think you've got a good model for that in your dear ol' dad. He's a second child, too. And he turned out okay.

I'm a traveling man...

...made a lot of stops

all over the world

-Ricky Nelson, Traveling Man

Today is a bit of a hard day for all of us. When we had originally planned our trip, we had been told to expect to be here about 2 weeks. Today is the end of that 2 weeks, and so we're checking out of the awesome hotel that has been our home and traveling to the Ronald McDonald House. We have made friends with Toni, who works at the front desk and considers the place to be her house. We truly felt like guests in her home (albeit a BIG 12 story mansion of a home!). We knew there could be complications that could keep us here longer than 2 weeks, but we always assumed those were things that happened to other people.

So, my folks are headed back to Raleigh for work, doctor's appointments, and to try to (briefly!) return to reality. Granna Jane is staying with us at RMH to keep Luke. At the same time we're saying goodbye to my folks, we also said goodbye to my aunt and cousin who'd come for a couple of days. Between all those goodbyes to all those caring folks, I'm feeling a bit down. I've never been good at goodbyes, and goodbyes here are the hardest of any I've ever had to say. I don't want people to leave! It's funny - this room can feel so small and cramped and full of people and all I want is to be alone with my baby boy. Then, all of a sudden, it seems so empty and I'm so sorry that there's no one here with me.

No medical news to report. Jay is slowly but steadily coming down on the heart meds. He's off epinephrine entirely which is a great big step. Others are being slowly tweaked, and so far his blood pressure and heart rate continue to be stable. They are tweaking his ventilator settings as well in preparation for the day when he will start breathing on his own. He's not there yet, and we don't really expect that big step to happen until the latter part of next week. They are doing chest PT, which consists of a percussor (resembles a mini jackhammer, and is about that loud) which thumps on his chest to break up the goo that's accumulating. He's not much of a fan, but frankly he is not a fan of the ventilator either. He's tried to pull it out on more than one occasion.

So, pray for safe travels for all those who are heading back to the real world. Tomorrow we'll report on our new digs at RMH!

Fever in the morning...

Fever all through the night.

--Elvis Presley, "Fever"

So a couple folks asked about Jay's fever - we're happy to report that it has gone away and hasn't returned since about 6pm yesterday. (Sorry the title is misleading, but there aren't many songs about NOT having a fever.) The docs never did have a good reason for it. There weren't any changes in his bloodwork to indicate an infection, and all his blood cultures were negative. He has had some gunk in his lungs that has been a bit concerning, but it never has looked like pneumonia on his x-rays. Whatever it is, it seems to be getting better as well. He has been on antibiotics just in case, but it looks like they are going to be able stop those shortly.

As mentioned this morning, today the docs have tweaked his epinephrine down. This is given to help his heart squeeze stronger, and so far his blood pressure has been fine with the reduced dose. Overnight, they will probably keep dropping the dose and see how he does.

He has slept all day, and it looks like they have found the right balance of morphine and sedatives to keep him in his happy place. So overall, no big news to report, and that is a good thing right now. The next step will be getting off the ventilator, but that probably won't happen for a couple more days. It is good to be the patient that doesn't get all the docs' attention, and we're going to try to stay that way for a little while.

Wake up, Little Susie...

...Wake up!

--Everly Brothers, "Wake Up Little Susie"

Last night was another quiet night for Jay. The docs are working to decrease the support he gets from the ventilator and his medications, but they are taking things very slow with him. In rounds this morning, his doc described the changes not as weaning his meds, but very slowly "tweaking" them down. So far he is off two meds, and only has 438 to go (okay really only about 12 more).

In the meds department, one thing I think is very interesting is that there is a pharmacist on rounds each morning. He is there to make sure that all meds are working together and that dosage changes (er, tweaks) are appropriate. Rounds usually include the attending ICU doc, a doc from heart failure team, nurse practitioner, respiratory therapist, 2-3 fellows, his nurse, pharmacist - thankfully ECMO specialist is no longer on that list. And us. That is one thing that is really cool: they let us stand right there with them and hear the discussion, ask questions. It's a very open process, and I am really grateful for it.

They are allowing him to wake up, which is great to see that he can open his eyes, look around, move his hands and feet, and even grab at his tube and lines. The down side is that he is quite agitated when he does wake up. He will grimace, open his mouth to talk, and sometimes sheds a little tear. It's absolutely heartbreaking to see him so upset. He's trying so hard to communicate with us - he's pointing at things and trying to talk. We are trying to be reassuring and comforting, and the docs and nurses are trying hard to give him additional drugs to help him relax.

He's apparently immune to morphine ... guess all those years of giving it to him at night to get him to sleep gave him some serious tolerance. I'm kidding, folks! No need to report me to social services. (See, I must be doing okay - still making pitiful attempts at corny jokes!) But seriously, they have had to give him more and more rescue doses, and each seems to have almost no effect. Last night, they finally went to pentobarb, and just after midnight he finally relaxed and went to sleepy-land. So we finally decided the nurses could watch a sleeping baby and we did the same.

Thanks to all of you for your continued prayers. Your comments and notes keep us going through the long days.

All we need is just a little patience...

Said woman take it slow
It'll work itself out fine
All we need is just a little patience
Said sugar make it slow
And we'll come together fine
All we need is just a little patience
Patience, patience, patience
-Guns N Roses, Patience



No real news today; it was a fairly steady day. I feel very relieved to be through the first 24 hours post ECMO, but that certainly doesn't mean we're past the scary times. He's still heavily medicated with drugs that help to support the function of his heart. His latest echo showed that the outside of his heart is squeezing pretty well, but the inside part (the septum that divides the chambers of the heart) is not doing much yet. We're still very hopeful that it will continue to get stronger as it heals from the trauma of the past week.

I'm trying to remember that Jay's body IS healing ... but he's going to take his time getting there. We begged and pleaded for his heart to return to a normal rhythm - and it did. We begged for his heart to begin squeezing on its own - and it did. Now I want to see him able to come down from some of the medications so he can start waking up - and I fully believe that he will. But it's all going to take time, and I need to relax and be grateful for the steps that we're taking, even when they are somtimes too small for me to see well.

It's very hard not to get caught up in what "the numbers" mean. The monitor above the foot of his bed is constantly giving information ... instant to instant blood pressure, O2 sats, heart rate. The daily echo gives measurable data about the function and output of his heart, the pressures within his heart. It's hard not to hyper-focus on those numbers and read more into them than I should. They are just hints to help understand his overall healing. At the same time, the numbers give insight about how he's doing, and if those numbers start dropping, we want to address it before the trend becomes a problem. That is a major balancing act, and one I'm struggling with. Why is it that one day dropping pressures and beeping alarms are a big problem, and the next day those same pressure readings and beeping alarms are a "wait and see" indicator? I trust the docs, but I want so desperately to see signs of improvement and tend to latch onto anything that will tell me he's getting better. Sigh.

So, patience. I'm trying to remember that God's healing hands (and the wisdom of countless doctors and nurses!) have brought him this far and trust that they will continue to support him in the days and weeks to come.

Last night...

...thinking about last night

Last night

Thinking about last night

-Traveling Wilburys, "Last Night"

All's well from the CICU. Jay was still a little "jumpy" last night when we finally went to the sleep room around midnight. He's on a few different meds to help him sleep & relieve pain, but the main one he was on (isoflurane) was a gas thru the ECMO circuit, so he can't get it anymore. Apparently some kids coming off iso get the shakes, and the poor baby has been shaking like a leaf. And it's breaking my heart.

It's funny what I can handle and what undoes me. Giant tubes of blood coming out his neck, running through a machine and back into his neck again? No biggie. Seeing a ventilator breathing for him? Eh, that's life in a hospital. The burn mark on his chest from where they shocked him during CPR? Makes me sick on my stomach. The sound of them suctioning spit out of his mouth? Sent me running from the room.

Jay's blood pressure did drop a bit during the night, and his temp did rise a bit as well. But they upped the medications a bit and gave him some Tylenol to bring the fever back down. And he seems to be settling back into a restful groove. I don't plan to really relax again. Ever. But I'm not planning to breathe until we're past the first 24 hours. He's still a very sick little boy.

Baby steps...

...baby steps

Bigger steps, Bigger Steps

Giant Steps! Giant Steps!

-Yo Gabba Gabba

Sorry for the delayed post - I know that y'all are on pins & needles (as we have been!) The wonderful news is that Jay is off ECMO!! That is a huge, giant step and we are so thankful that went as well as it did. Surgically, he did great - minimal bleeding (though he did need to receive some blood) and his blood pressure/rhythms/oxygen levels stayed right where they needed to be without mechanical support. We were able to come back and see him about 2 hours later, and I've never been so happy to see a dirty little boy. (Y'all, he's seriously grungy after the multiple betadine baths he's had.) We were almost able to celebrate this big milestone, but I think from now on we'll always take good news with a bit of "Okay, where's the hitch?" mixed in.

Things were looking beautiful for about an hour or two, but then he spiked a high fever. (See why we're always looking for a hitch?!) Fevers, unfortunately, are very hard on the heart. They can increase your heart rate. That speedy beat challenged his heart more than the docs were comfortable with. The stress on his heart caused his pressure to start dropping. Our absolute favorite doctor, Dr. BJ, was pretty concerned.

He started coming out of the anesthesia, which meant he was more awake ... but uncomfortable. They wanted to give him more morphine, but that unfortunately causes a drop in blood pressure - bad news when it's already lower than they wanted. I was trying not to freak out - at least visibly. Inside, I was shaking. But there were two things Derek and I could do: help to keep him calm (since more morphine was out of the question) and help to bring down the fever with cold washcloths. Both are mom skills, not nurse skills, and I was beyond grateful to be able to do SOMETHING.

So we sang. (Do the song lyrics give away the fact that we love music, in spite of our complete lack of musical talent?) And it really seemed to help keep him calm. Then we froze the poor kiddo with our continued icing down of every exposed body part. And his fever came down. I won't take all the credit for his improvement, but he is vastly improved now from where he was 2 hours ago. Upping the heart support meds helped some too, no doubt. But I am glad I was able to do something.

He is currently resting quietly, courtesy of some stronger happy/sleepy/be still juice. And, for the moment, his pressures are good and his heart rate is strong and his O2 levels are fantastic. He is by NO MEANS out of the woods. The next 24 hours are going to be huge, so please keep praying for us. He took a giant leap today, but there are still many many MANY more steps before we get our baby back in good shape.

This is the day...

...that the Lord has made

Let us rejoice

And be glad in it!

Well, as predicted, Dr. S came in to observe while the echo crew was here to take today's pictures of his heart. (I stepped out because I couldn't handle another "turn off the faucet" moment!) And while his pressures and oxygen saturations did drop when they turned the support down to 20%, in general, he did pretty well. So he passed the test ... and they are taking him off ECMO this afternoon. He didn't make an A+, but he scraped by. This afternoon, we need to see A+ level work.

We are happy-scared. We've waited for this day for a week, and we are thrilled at this big step. At the same time, we're nervous that his heart still has a long way to go for complete healing. They have increased the medications that are supporting his heart (Better living through chemistry, right Dad?!) and we're hoping that those are going to continue to improve his heart.

So, this is The Day. The BIG day that we've been praying for. I know that it is a day that the Lord has made, and I'm trying very hard to rejoice in it and to let the rejoicing help me float on top of the fear instead of drowning it it. I'm constantly reminded that we have a ba-jillion prayers being said for us, and I can't help but be reassured by that. But if you want to lift up one more late this afternoon, make it a prayer for Jay's strong heart.

This little light of mine...

...I'm gonna let it shine!

This little light of mine

I'm gonna let it shine

Let it shine, let it shine

Let it shine!

I have some wonderful friends. And when my dear, extra-wonderful friend LJ learned that the little sleep rooms are so dark I'd been using my cell phone to find what direction is up, she bought me a tiny little nightlight. It's small enough that it can fit in beside my toothbrush, so it goes back and forth with me every night. That little blue glow is just enough so that when I wake up at night, I can remember where I am. And every time I see it, I smile and give thanks for my friends who are worried about me.

These rooms we're using at the hospital are essentially closets just wide enough for a single bed. Some of them have a little chair or a little nightstand, and the one we had last night has a little sink and a window that overlooks the ER waiting room. Oooh, the luxury suite! While I jokingly complain about the tiny beds with little hard pillows, I really am so grateful to have a place to stay here. Our sleep rooms are right around the corner from the CICU, so if anything happens during the night, we can be there in an instant. Here's a visual - please note the way we turned the pillows!

When Jay is off ECMO and therefore more awake/alert, we will want one of us here in his room at all times. But for now, we're happy to be close enough to run here, but far enough away to avoid the incessant beeps and alarms and get a little bit of sleep. We're requesting a room at the Ronald McDonald House, but it's a day-to-day question whether there will be space there.

Jay is still steady today and they are prepping him for the big test later this morning. There's still discussion of taking him off today or tomorrow, and the results of this test will help guide that decision. They initially told us that 7 days was the "magic" number, and today is day 7. He's tolerating ECMO very well, but we want to get him off before he begins having problems with it.

The CICU is currently a bit of a war zone, and we don't want Jay to have any problems when docs are distracted with lots of other problems. Two other kids went on ECMO yesterday, and it's pretty chaotic. So as much as you're praying for us, there are lots of other tiny babies who need your love and prayers today too.

I believe there are angels among us...

...sent down to us, from somewhere up above

They come to you and me

In our darkest hour

Show us how to live

Teach us how to give

To guide us with the light of love

Alabama, "Angels Among Us"

I don't pretend to understand angels. But I do know one, and I know that she is always ALWAYS there when you need her. This angel surprised us with a visit yesterday. (And if anyone else is considering a surprise trip to Philly, y'all had best let me know, 'k? I've filled my surprise quota!) LL is the children's minister at our church, but she is so much more than that to us. She is a friend, a listening ear, and the most genuine person that I know. Jay adores her, even more now that she gave him a whole package of silly bands shaped like - what else? - TOOLS! All of us who are cheering him on here are wearing silly bands that he picked out for us. (Mine is a screwdriver.)

LL's time here was short, but she was able to spend some really special time with each of us and was a great support not only to me and Derek but also to our parents as well. She got a bit of snuggle time with Luke, had a nice chat with Jane at breakfast, a good talk with my Dad on the way back to the airport. She told us all about what had been happening at church, which was a wonderful distraction for me. There are so many of our FBC friends who are praying for Jay and for our family - it is just amazing. She brought the love of many in our church family with her, and I could not be more grateful.

But I have to say ... I've felt the same twinge of sadness after both of my surprise visits. Even if these wonderful friends stayed for a month, I would cry when they left. They give me such a lift, and I can't help but feel a little down as I fall back to the reality of this place. As I was walking out to the car this afternoon, I kept thinking "It sucks that I know this place so well! It sucks that I know exactly where the forks are in the cafeteria! It sucks that I know which lane to be in to avoid traffic on the interstate! The fact that we're still here with no end in sight just sucks!"

I know that I need to remain positive, but tonight I'm just feeling a little down. I am so incredibly grateful for your notes ... e-hugs, paper cards, phone calls, and real, live, in-person love from family and friends. But I still wish we didn't need them.

And the beat goes on...

...the beat goes on

drums keep pounding rhythm to the brain

-Sonny & Cher, "The Beat Goes On"

So Jay's surgeon came in today and sprang a pop quiz on him. Yesterday the plan for today was for Jay to rest and then repeat the echo tomorrow. Well apparently, the surgeon was so happy with his progress he wanted to speed up Jay's transition off ECMO if possible. So that meant another echo today in front of the whole team of docs, fellows, ECMO techs, nurses and the janitor just for good measure.

We don't have any official word yet, but it looks like Jay is procrastinator like his dear, ol' dad. His heart function appears similar to yesterday, so apparently he was partying with the guys last night instead of studying. He again did really well when they turned down the ECMO support to 25%, but right now it's not clear that he has enough function to completely come off.

Then, just a minute ago, the surgeon came in and turned the flow completely off! No gradually reducing from 100% support to 75% to 50%. He turned it off the way we'd turn off a faucet, without any warning or anyone else watching - it was kinda "Hmmm, let's see what this does." EEEKK!!

But the beat goes on! Jay's heart kept pumping just fine and the rhythm stayed normal, though his blood pressure did drop a bit. It's rebounding now, as is my own heart which spent the last few minutes in the back of my throat somewhere.

So, no real news though they are discussing taking him off ECMO tomorrow. We're still waiting on that, but we will update you as we know more. That would be a huge HUGE step, and while we absolutely want to make that step as soon as we can, we also want to know that he is ready. So say a little prayer that his heart continues to strengthen throughout the afternoon and evening tonight.

Can I get a witness...

Can I get a witness,

can I get a witness?

--Sam Brown, "Can I Get a Witness"

The song title is kind of random for the subject of this post, which is the nurses here at CHOP. The title comes from me walking through the CICU and hearing one of them ask, "Can I get a witness?" What that means is that they need another nurse to come in and check behind them to be sure everything is done correctly. They are required to get a witness for certain tasks, including adding a new drug, a dosage change, and a triple check when he gets any blood products. Since Jay got a boatload of blood products (friendly reminder to give blood if you're able!!), and is getting dosage tweaks & new drugs pretty routinely, we hear a fair amount of "Can I get a witness?" They are vigilant about checking/double checking everything, which is very comforting given the sheer amount of "things" that get done to him.

He has one on one nursing care everyday, and each nurse is on for a 12 hour shift. He also has an ECMO specialist assigned to just him. So there are two people focused just on his care 24 hours a day. It seems like overkill to have 2 people in the room all the time, but he is currently getting 13 different IV infusions at a time (not counting the ECMO) so there is almost always something to do.

One of the little things they are very concerned about is making sure he has a good mattress. They switched him to a "Rik" mattress, which is kinda like a giant cloud to sleep on. (Let me add for the record that while they are very concerned about the sleeping comfort of their patients, they aren't nearly so worried about the squishy-ness of the parent beds. One night, my pillow was so flat I seriously thought they had forgotten to put the pillow into the pillowcase. Not complaining, mind you. Just sayin'.) But Jay's mattress is so awesome that it adjusts to his position so that he doesn't get irritation or put too much pressure on his little hiney, head or heels. While a new mattress may sound like no big deal, it took an army of people to get him on it. One person to hold the cannulas for ECMO (definitely don't want those to come out!), one for his breathing tube, one for his top half, another for his bottom half, and another to put the mattress in while the other 4 lifted in unison. They definitely waited on his arrhythmia to improve before attempting this, but with all of them and 15 minutes of planning, it went off without a hitch.

There are lots of other little things that are just good nursing care, but make a big difference in his comfort. He gets a wipe down bath once to twice a day, which again is a bit of an ordeal to roll him onto his side so they can clean his back. He has a little gown on--it probably doesn't matter a bit to him, but we certainly feel that he looks better that way. Also in the way of clothing, he now has some Buzz Lightyear boots (not really, but they do some what resemble space boots) that help keep him from getting "dropped foot." That way when they let him walk again, he'll be able to.

Hand washing and infection control are huge. CHOP was recently named the top hospital for nursing care, but didn't have the top spot for patient safety. Now they are gunning for that too by putting a huge focus on preventing infections through urinary catheters, IV catheters, ventilators, etc. Every visitor gets grilled about coughing and runny noses and is instructed in proper hand washing.

All that is great, but more than anything they treat Jay like a person, not just a case. Before doing anything, they explain what they are doing and ask him to help (open your mouth so we can clean your chompers!). Several have stopped by to check on him when they were assigned to a new patient on their next shift. They want to know what he likes, and when they found he likes tools, they did this:

It may be hard to tell, but the tool box at the bottom is an actual tool box, so the window art is 3D! I'm not sure if this means he is a favorite, or that we are going to be here a while--either way it brightens my day when I walk in, and will certainly make him happy when he wakes up.

Last, the nurses are quite concerned about us. On Wednesday night after Jay arrested, a nurse from one of the other patients spent the entire time with us. She constantly went back to check on how things were going and made sure we knew what was going on. She was super-supportive and still drops by to check on us each day. We've gotten to know several of his nurses and ECMO specialists quite well, and it always reassuring to see a familiar face at shift change.

As for actual Jay news, he had a good night last night hanging out with the guys--he had a male nurse and male ECMO specialist. We joked that they would put some pizza and beer in a blender and put it in his nasogastric tube. Hopefully today will be a quiet day today with more rest and recovery.

Just beat it, beat it, beat it...

No one wants to be defeated.

--Michael Jackson, "Beat It"

So yesterday our excuse for the late post was that there was nothing new to report. Today our excuse is the opposite. We had a post halfway written this morning when the stream of doctors and tests started. Now that post is pretty irrelevant and outdated, so here's the latest.

It has been a pretty full day of activity--it's amazing the difference in the pace around here on a weekday versus the weekend. This morning they performed another echo to look at how well his heart is contracting. Still squeezing some, and a little better than before, but still not quite good enough.

Then came the big test. All the docs on his case came to the room, and they turned down the flow on the ECMO (bypass machine) to 75% flow. His blood pressure, heart rate, and rhythm stayed steady. That meant his heart was doing the other 25%. Also, his heart started to contract better! This is what a normal heart should do. When it gets more full of blood, it squeezes harder.

Since he did so well, they went down to 50%, and got the same response. The doctors looked at one another, and the fellow on his case asked, “25%?” The attending agreed, and everyone got ready. They made sure the echo technician was ready so that he wouldn’t be turned down too long while she got the images. The ECMO specialist told everyone he was turning down the machine, and I felt a combination of excitement, hope, and sheer terror. I constantly shifted my eyes from Jay to the screen of the ultrasound to see what his heart was doing and to the monitor to see what happened to his blood pressure and heart rate. And what happened?

Nothing.

Nothing! Glorious nothing! No alarms, no bells, no whistles! His blood pressure even went up a bit, and his heart rate stayed steady. Again, his heart squeezed a bit harder with the extra blood flow.

So this is obviously great news. But he clearly is not ready to get off ECMO. Now the plan is to give him a couple of days and reassess his heart on Wednesday. As one of his doctors said, "He has a bit of homework to do over the next couple of days, so he will be ready for his next test."

All's quiet...

All's quiet, tonight.

--Everything, "All's Quiet"

I'm sorry we have left you dangling all day, but there really hasn't been much to report. Overall, that's good. Jay's rhythm is still spot on normal. His heart is continuing to contract a little. You can still see his little heart beating. He still alternates between sleeping and moving his arms and feet around a bit.

The downside is there isn't any great news to report either. We were all hoping for a similar improvement to what we saw yesterday. Unfortunately, if there has been any improvement, it is minor (and it depends on which of his 284 doctors and 153 nurses you ask).

Several of his doctors are pointing to tomorrow as the Big Day in which they hope to see some improvement. He will have been on ECMO for 5 days tomorrow night. The goal was to have him off ECMO by day 7, and to do that, they will need to start weaning him off pretty soon.

Tomorrow they will perform another echo (ultrasound of the heart) to look at how well it is contracting, and then decide if they can try to decrease his support from the ECMO machine. We're praying, crossing our fingers, and rubbing our lucky pennies that his heart is stronger tomorrow.

In other not-so-hot news, Luke is still fighting a nasty cold with a hacking cough, which everyone assumes is a rhinovirus. Awesome. He's eating well, has no fever, and is generally happy ... though JenB/Lisa/Crystal/Melissa might see that differently after the all night cranky party they got to enjoy with him. We're keeping him far from Jay, and making sure everyone who's been at the hotel changes clothes & washes hands before coming to see Jay. We haven't taken him to a doctor (we've seen enough of them lately!) but we hear that the ER here at CHOP has an urgent care level, so we'll probably do that if he isn't improving significantly in the next day or so. Cause we need some more medical bills from CHOP.

Thanks again for all of your prayers. This room is getting a little cozy, we're all tense, and we're running low on positive attitude. Your comments and your support are little moments of sunshine in our days.

These are my people...

...this is where I come from

We're givin' this life everything we got

And then some

It ain't always pretty, but it's real

It's the way we were made, wouldn't have it any other way

These are my people.

Rodney Adkins, "These are my people"

My friend who is Chillin' With Lemonade wrote a few posts about her "life sustainers." These were the people who were there with her during the darkest days of her life and helped - and are still helping - to pull her through. Today, my sustainers paid me a surprise visit to Philly, and I absolutely couldn't have been more surprised or more thrilled to see these amazing women.

They told my folks and Derek that they were coming and apparently it was not presented as an option. It was "We're coming - should we tell Jen or let it be a surprise?" And what an amazing surprise! I came back to the hotel to feed Luke and they were waiting for me in my hotel room with the four best hugs I've ever had. We sat and visited for a few minutes and then they sprang into action: doing my laundry, taking lunch to Derek, taking me out into the sunshine for a walk, insisting I eat and drink when I would have just forgotten. They are currently getting some quality time with Luke so my folks and my mother-in-law can get a good night's sleep. Absolutely amazing.

I spent most of the day away from this ICU room, and the combination of a little distance from words like "amiodarone," a brisk walk to Target in the sunshine, and the love of these wonderful girls has improved my spirits in ways I can't even describe. I love you ladies!

Enough about me - y'all want an update on Jay, I know. He's been very, very steady all day. His rhythm is lovely and we're still getting consistent (though weak) heartbeats. He's liking his comfy new mattress and has tolerated lots of touching and moving without so much as a skipped beat. He was just moving his legs around and now he's currently clamping his mouth shut so the nurse can't suction his breathing tube. We've got our favorite nurse and ECMO specialist on tonight ... they're the clean freaks of the unit and start their shift by wiping down every surface in the room with alcohol wipes. All in all, he's doing great and we're hoping for another smooth, drama-free night.

I'll end this tribute to my people with this story from one of my favorite blogs, Adventures of a Funky Heart (a fantastic resource on congenital heart disease). He was talking about the importance of finding support from other heart moms, and that's hugely important. But whether or not your sustainers have been in your shoes, finding people who will take on your hurts as their own makes your burden bearable.

In the TV series The West Wing Leo tells Josh the story of the guy who fell in the hole. A good support group is like the friend who jumps in the hole with him. Here’s the story:

“This guy’s walking down the street when he falls in a hole. The walls are so steep he can’t get out. A doctor passes by and the guy shouts up, ‘Hey you. Can you help me out?’ The doctor writes a prescription, throws it down in the hole and moves on. Then a priest comes along and the guy shouts up, ‘Father, I’m down in this hole can you help me out?’ The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by – ‘Hey, Joe, it’s me! Can you help me out?’ And the friend jumps in the hole. Our guy says, ‘Are you stupid? Now we’re both down here.’ The friend says, ‘Yeah, but I’ve been down here before… and I know the way out.’”

Thanks, girls, for jumping into the hole with me. I love you!

You came upon me wave on wave...

You're the reason I'm still here.
Am I the one you were sent to save,
When you came upon me wave on wave.

Wave on wave.
Wave on wave.

--Pat Green, "Wave on wave"

So apparently there weren't any waves rocking the boat last night, and the waves that he had were only good ones. His EKG was perfect throughout the night and continues to look fantastic this morning. Such happy news to wake up to!

On his monitor, there are two things that we're looking at right now - the top wavy line (green) shows the electrical activity of his heart. It should look something like this:

But yesterday, it looked like this way too often and for way too long:

Last night, and all day today, he has kept a perfectly normal rhythm in spite of being moved onto a new mattress (more cushy since he can't move) and getting a new dressing on the large cannulas that are going into his neck. Yesterday, they were scared to do either for fear that it might cause his arrhythmia to get worse. They must be pretty confident that his rhythm is stable as they took out the defibrillator that had been parked at his beside since his arrest episode. Nice to get that scary piece of equipment out of the room.

The other wave we're watching is a little red line that displays changes in his arterial blood pressure. The ECMO machine constantly pumps blood in, so it is a flat line. Normally there is a distinct wave with each heart beat. With ECMO there are no pulses, so no pressure changes. But today, with every big wave on the EKG, there are visible blips on the red pressure line. That means his heart is doing something. Not only doing something, but doing what it is supposed to do when it is supposed to do it.

These are very small blips, but he now does have pulses that you can faintly feel and can see his chest move ever so slightly as his heart beats. It is still not nearly as strong as they need to be, so there is no talk of taking him off bypass this weekend. So pray that these blips start turning into waves.

And the people all said, sit down...

...Sit down, you're rockin the boat.

--Don Henley, "Sit down you're rockin' the boat"

Derek here as guest author, and it's getting past my bed time so this will be pretty short. Overall, Jay is about the same this evening. As Jen mentioned this morning, he had a few hours of a significant arrhythmia last night (ventricular tachycardia or v-tach for those of you who want those details) which stopped rather suddenly this morning. It appeared to stop when they were moving him to attach stickers that are used for the defibrillator (the paddles that are used to shock the heart back into rhythm). Either the movement or the threat of the defibrillator were enough to break the v-tach. I was just standing nearby when it happened. For most of the day, his rhythm remained abnormal, but it was tolerable.

This afternoon he went into v-tach again when they were moving him over onto his side. He stayed that way in spite of mega doses of drugs that should stop this sort of thing. When they began to talk about defibrillating him, he suddenly converted again. Apparently he got he memo, and fixed it himself. Again, I just happened to be standing there. This time he pretty quickly returned to a normal rhythm that was periodically interrupted by abnormal beats. He's stayed that way since about 6:30pm so the plan for the night is to not rock the boat. They are going to micromanage all his drug levels and electrolytes to try and keep in his normal rhythm to stay.

We still don't know why he's having these episodes of arrhythmia. They've done quite a few blood tests, an echocardiogram, consulted with the heart failure team, and the electrophysiology team (the heart electricians), but no one has a good answer. Actually, no one really even has a bad answer. But, as long as he maintains his normal rhythm, we won't worry about the why.

Time to crawl into the little twin bed (yes, both me AND Jen), and try to get some sleep. Hopefully, there won't be any middle of the night drama tonight.

Lovin', Touchin', Squeezin' ...

...each other

Journey - "Lovin' Touchin' Squeezin'"

Want the good news first or the bad? We'll start with good. This morning, they decided to let Jay wake up just a little and see how he responded. The sedative that he's on takes only a few minutes to wear off, and within 15 minutes, he was squirming a bit and trying to blink. (He's got goo on his eyes to keep them from drying, so blinking was quite a challenge.) And the best moment I've had in the past 24 hours - he squeezed my hand. Oh, happy tears! Then he squeezed Derek's hand on command and I've never been so happy to see those little fingers wiggle. He eventually moved both hands and both feet and moved his lips a little. He definitely seemed uncomfortable, so they bumped the sedative back up and he's happily back in lala land.

And for the not-so-good news. Around 3 a.m., his heart rhythm (which had been beautiful all day yesterday) began to get really ugly. So, to give you a bit of background, his heart is beating in that it has electrical impulses of a normal functioning heart. It is not squeezing like a normal heart or pumping blood, however. He has no pulse because that's created by the squeezing action of the heart. That pumping is being done by ECMO, which runs a continuous flow rather than a pulsing flow like the heart. (Y'all keep in mind - I have readers at all ends of the medical expertise spectrum. I'm simplifying here, so heart families/veterinarians/medical professionals please overlook the mild inaccuracies!)

During the night, the electrical impulses - the beat of his heart - got all out of control and his heart rate went sky high. While this would have been life threatening if he weren't on ECMO, his big ol' external heart and lungs did the job they are designed to do. Everything else stayed within acceptable levels, so that's good news within the bad. It stayed like that for several hours until Derek came in this morning. Apparently, he just needed his daddy. Well, that and the threat of using his pacing wires seemed to scare his heart back to rhythm. While his heart rhythm is NOT normal yet, it's significantly better. We're going to pray that it continues to recover and that his tired little ventricle continues to get the rest it needs.

Thanks again for your prayers and positive vibes. Let's hope that Friday the 13th is a lucky day for Little Jay-man.

Can you feel the love tonight...

...it is where we are
It's enough for this wide-eyed wanderer

that we got this far

-Elton John, Can You Feel the Love Tonight

I am in awe. I am absolutely overwhelmed the outpouring of love and support you all have shown through comments left on this site, facebook, email, phone calls. I have been teary all day (umm, understatement of the decade), but when I realized there were nearly 50 messages here, I just couldn't stop the waterworks. Thank you.

Nearly every one of you said you were praying for us - and it's a darn good thing because my prayers have been pretty pitiful lately. I can't get past "Dear God - Help us! Help Jay!" I must have said those words a million times today. I truly just don't know how to pray right now. But I trust that God knows what I need when I don't know the words to ask, and that the words y'all are offering up for us, the positive thoughts you're sending this way are making a difference. I know that we wouldn't be holding it together at all without your love.

All the docs keep saying that it's been a good day. I guess they have a different standard for "good" than we do, but Jay has been very stable and all his vital signs are steady. And that is good. He's heavily sedated and has not opened his eyes. But he is responsive to touch ... sometimes too much so. He's very sensitive, and even just rubbing on his hand can make his blood pressure drop below the range the docs want to see, so we're trying to "look with our eyes." (That's totally the kind of thing I'd tell him when he tries to touch breakables that are in his reach!) His coloring is good, and he's making loads of pee, so his kidneys are working well. But it is VERY hard to look at him with all the lines and tubes coming out. I started to count, but decided that was not in my best interest.

Tonight Derek and I are staying in one of the Ronald McDonald House sleep rooms on the floor. It's just a tiny room with a bed, but it is close enough to be able to get to his bedside in a minute, but far enough away that we don't have to hear the unending "beep beep" of the monitor. (Heart moms, you can hear it now, can't ya?!)

There's not much news about how he's doing - truly, he's just resting and giving his heart a chance to recover from a big surgery and a really traumatic night last night. We covet your prayers for his complete healing, and for our peace in the midst of chaos. Thank you for caring about our journey.

Heartache tonight...

Things did not go well last night after Jay's surgery. He was doing much better when I left around 10, but a few hours later, his heart began to fail. I can't even believe I'm writing these words.

They did CPR on him for over an hour, and then did a surgical procedure in the ICU to put him on ECMO, which is a heart-lung bypass machine. ECMO was described to me as "crutches" for your heart - it does the work of pumping blood through the body so that the heart can heal. His heart is beating again on its own, but it is not strong enough to pump blood through his body. They hope to begin weaning him from it in a few days, but they have told us to focus on what happens in the next hours, not days.

He's now in the cath lab where they are creating a small hole between the upper chambers of his heart. That will take additional pressure off the left ventricle which is currently so weak.

He's on major blood thinners, so bleeding is a significant risk - from the tubes and lines for IV, cath insertion, and ECMO canulas, but also a major risk of bleeding in the brain (stroke).

Derek was with him when he went into cardiac arrest, and he called me to come to the hospital immediately. The entire cardiac staff was around his bedside - I've never been through an experience more terrifying or heartbreaking. We were able to be with him for part of the night between the many procedures and tests. He is heavily sedated and I'm told he will not remember any of what happened. We talked to him and sang to him, praying our voices would bring him some comfort. One of the docs even let him take his cow lovey to the cath lab.

Please pray for him. Please pray for us. We are scared beyond words.

Take it...

...take another little piece of my heart now, baby

"Piece of My Heart" - Janis Joplin

(Note for those of you using feed readers, this was posted immediately after surgery, and then it somehow disappeared. I'm re-posting just to keep the story complete...)

Whew. The anticipation, the waiting, the worst of the worries are over. Jay made it through open-heart surgery like the little champion that we all knew he is. He has a nice shiny new valve, which wasn't our ideal outcome, but Dr. S was able to put it in the normal valve space which is very good. (Sometimes they have to put it above the old valve which can cause some additional complications.) Wanna see one in action? That's not exactly like his, but it's pretty similar and you can see how an artificial valve works. It's made of a carbon fiber material that's actually more similar to ceramic than to metal. And he won't set of any alarms when going through airport security.

He's currently in ICU and spent most of the afternoon/evening drifting in and out of lala land. He would wake up just long enough to beg for juice and then drift off by the time said juice was delivered to his bedside. He's had 3 requests - juice, watch Yo Gabba Gabba, and to go swimming. Anything you want, sweetie. Except it will be a while before that trip to the pool... Oh, and he did request that I hold his hand. Makes this mama's heart very, very happy.

Medically, he's doing very well but still has a long way to go. He's been dealing with "heart block" which means that his heart rhythm isn't quite right. The top chambers of his heart aren't pumping in time with the bottom chambers, which means he's got a lot of skipped beats. Like, almost every other beat. This abnormal rhythm (along with the fact the pressure inside his heart is vastly different than it was yesterday!) is also causing his blood pressure to be very low. They spent most of the day trying to address the rhythm and the blood pressure, and we're hoping that both improve with time. He has external "pacing wires" which are literally tiny wires that go directly to his heart. Those wires are just taped to his chest at the moment, but if his heart rhythm doesn't settle out soon, they can be connected to an external pacemaker to help his heart figure out how to clap along with the music. It was starting to settle into a better pattern when I left this evening.

Otherwise, he's doing amazingly well. He looked great when we finally saw him - a little pale, but generally pretty good for someone who'd had his ribcage cracked open. Truly, I can't thank you enough for your kind words, your positive thoughts in our direction, and your prayers. God is good - all the time.

It's the eye of the tiger...

...it's the thrill of the fight

rising up to the challenge of our rival

and the last known survivor

stalks his prey in the night

and he's watching us all with the eye of the tiger

So many times, it happens too fast

you change your passion for glory

don't lose your grip on the dreams of the past

you must fight just to keep them alive

-Eye of the Tiger, Survivor

(Regular blog readers - well okay just Mandy - sometimes try to guess what I'm going to use for my intro song ... betcha nailed this one!)

So, we made it safe and sound to Philadelphia. Luke did great on his first flight, and Jay was super stoked about the airplane ride (though he made it clear we were NOT riding on Jay Jay the Jet Plane). When we stepped into the airport, the overhead message said "Welcome to Philadelphia!" and Jay repeated it for the entire walk out to baggage claim. The dads had no problem along the drive and managed to stop only once for lunch/gas/bathroom break. Let me assure you that if we'd been traveling with them, we'd have required at least 2 stops for each of those tasks, adding many hours to the travel time. Our hotel is great and we have brought enough food to last us for a 3 month stay. If we measure how much we're loved by how much food you friends sent for our journey, we are very, very well loved. And may gain very much weight before our return.

This morning, we headed to CHOP for pre-op and meetings with the surgeon, cardiologist, and some additional testing. Everything went as well as it could have gone. It seems silly to say, but people at a children's hospital are really good with kids. They take the time to explain what they are going to do, let him see and explore the equipment, and talk with him about things that interest him. They really make being at the hospital as un-miserable as possible.

There isn't much new medical news to report. The surgeon, Dr. S., is fairly certain that it's going to be a replacement valve rather than a repair. While that's disappointing, we feel confident in his judgment. Jay's heart valve neither opens enough (stenosis) or closes completely (regurgitation). The way to fix a valve that is regurgitrant is to make it a little too small, and the way to open up one that is stenotic is to allow for a little regurg. (Nice word, huh? Nothing like a little heart valve puke.) So, the solutions to the two problems are, unfortunately, in direct opposition to one another.

As mentioned before, the main problem with an artificial valve is that he'll have to be on blood thinnners - coumadin. But talking with folks here really reassured me about that. He can still be active, and I won't have to constantly worry about every little bump and bruise. He'll bruise more easily, but he's not going to bleed to death from a paper cut. He can still play sports (though no football to Derek's mild dismay), but he'll have to wear additional protective gear. He can even play baseball as long as he wears a chest protector.

One thing that was slightly comforting news is that he expects the whole procedure to be 3-3.5 hours, while the other surgeon we met with indicated 5-6. This surgeon does this type of procedure more frequently, and we want to minimize the time under anesthesia and on the heart-lung machine. And of course, we want to minimize the time we have to spend torturing the chairs in the waiting room by digging our nails into the upholstery.

This evening, we headed out to do a bit of sightseeing and started our tour of Philly with the Philadelphia Museum of Art. Don't worry, we didn't take a toddler and an infant into an art museum ... we just pretended to be Rocky climbing the steps out front. And, like Rocky, we're ready to take on a big obstacle and come out on top.

Thanks to all of you for your prayers for our safety and for the difficult days ahead.