Back to life...

back to reality
-Soul II Soul, "Back to Life"

Reality. Is this our new reality now? I am slowly - very slowly - trying to return to some semblance of a routine, a normal life, but it's proving difficult to find any kind of pattern to our days. And that is just part of why it's been so long since I've posted.

I said this to an old friend today (and made myself laugh with it!) so I'm going to use it again here. I feel like I'm supposed to say, "Whew! Sure am glad that near death experience for my child is over. Now I can get back to that pile of dishes I was working on." It's like I'm supposed to just pick up where I left off, like everything is just fine. Truth is, I don't feel fine. I don't know how I'm supposed to feel. I don't know how to describe how I do feel. But "fine" really isn't on the menu.

I'm worried. I go in to check on Jay multiple times every night to see if he's still breathing. I worry he'll fall and have massive, coumadin-induced internal bleeding that I don't even know about. I worry that his heart rhythm isn't right. I worry that I'm pushing him too hard when we practice what he's learning in physical therapy. I worry that he's not eating enough. I worry that the only foods he'll eat are Goldfish, hummus, and whole milk.

And that's just my Jay worries! I worry that Luke STILL isn't over his cough/congestion/sinus infection, even with antibiotics. I worry that he has some undetected heart defect that will pop up at seven months old and steal him from me. I worry that I won't be able to keep up my milk supply and I'll have to serve him beetle-infested formula. (Seriously, did you hear about the formula recall? For beetles?! So gross.) I worry that he isn't getting enough attention and that the only one-on-one time I spend with him with him is feeding him. With one hand. The other hand is busy checking my email on my phone.

Hell, I'm a worry wart. I worry about a million things. Some of my worries are logical. Some, not so much. Some are significant, some so minor they don't deserve the mental energy I give them. But still, I worry.

I'm frustrated. Jay's still a two year old, and they don't call it the "terrible twos" for nothing. He can drive me batty with his whining, demanding that I drop what I'm doing to watch him unscrew a plastic bolt out of a pre-drilled plastic chunk of "wood." For the hundred millionth time. RIGHT NOW.

I'm struggling with guilt. Seven weeks ago, I thought I'd never again see him play with his tools. How can I say no to that adorable little face who simply wants my attention? (Even if he wants ALL of my attention?!) These other things I'm doing - talking to the cardiologist, getting prescriptions refilled, feeding Luke - they can wait, right? I should appreciate every single moment and celebrate his two-year-old-ness, right? Arggghhh!

I'm exhausted. Luke is sleeping through the night more often than not (Hallelujah!) but I'm still struggling to catch up from many sleepless nights. And that exhaustion leads to my short fuse, and I start spinning on the Frustration-Guilt-Exhaustion Wheel, and it's not pretty.

So, I'm sorry if this comes across as whiny and ungrateful. Truly, I am so genuinely and completely happy to have my child happy and healthy. I am so happy to be home that I don't want to leave, even to go to the grocery store. The four of us went for a walk tonight, and I just wanted to freeze that moment in time forever, listening to the magical sound of Jay's laughter. I am blessed beyond words. But I'm still not sure how to reconcile that genuine joy with the grind of daily life. I'm trying to find our normal.

Let the good times roll..

I don't care if you're young or old
Let's get together and let the good times roll.
--BB King, "Let the Good Times Roll"

Since getting back home, we've been super busy - there's quite a list of doctors' appointments, lab work visits, physical and occupational therapy sessions that are keeping us out of the house (and, for the most part, out of trouble!). But even more importantly, there's a an enormous list of people that we want to catch up with.

To start, yesterday we visited our friends at Jay & Luke's school - and it was like homecoming. Everyone seemed glad to see the boys and ready to welcome them back to NCSU Bright Horizons. They have treated Jay like one of their own - and he's never even spent a day there! Apparently being Luke's brother gives you special treatment. We are incredibly grateful to have found a wonderful center that can take both of them.

We squeezed in Luke's 6 month checkup (only a month late!) then we trekked over to visit Gabby and fam. We hugged, we laughed, we ate Aunt Mandy's fantastic empanadas and (wonder of wonders!) managed to make it out before either of the kids had a meltdown.

But those two visits took half a day, and we're realizing that it's going to take forever to see everyone we want to see...

So, we're throwing a Welcome Home Jay party!

Please join us this Saturday (9/25) for a big ol' backyard bash, Foster-style. The gathering will start around 4:00 and continue until we're celebrated out (or until the mosquitoes eat us alive - whichever comes first). We'll grill hot dogs and load up the crock pot with baked beans. To round out the meal, please bring a snack, side, drink, or sweet treat to share. There will be a yard full of toys for kids of all ages, but you might want to bring your own lawn chair. But no gifts, please!

Yes, we realize that by putting this out on the blog, we could have a really big crowd. And that's the idea! Seriously, we have been so overwhelmed by the generosity and prayers by so many of you. And we really do want to see you, hug you, and thank you for being a part of this difficult journey we've been on. We really mean all of you--friends, family, coworkers, neighbors, and anyone else who wants to come. Don't know where we live? Email me. So that we know how many hotdogs to get, let us know you are coming--email, comment on the blog, facebook, or whatever works best for you.

So, please come as we celebrate life and finally returning home.

And if the world starts getting you down...

There's room enough for two
Up on the roof (up on the roof).
--The Drifters, "Up on the Roof"

So through this ordeal, Jen and I have often wondered what Jay's view of it was. He made it pretty clear the last couple weeks how he felt about things. Playroom? Good. Hot dogs? Great. Medicine? Only if I have to. Phlebotomists? Not them again! In other words, he returned to being a pretty normal two year old who had spent way too much time in the hospital.

What we really wondered was if he had any recollection of his arrest, being on ECMO, and being on the ventilator. We were pretty sure he wouldn't since he was getting enough morphine and midazolam every 4 hours to lay me out for days. But we still wondered did he dream, did he see the bright light at the end of the tunnel, or did he talk about tools with his namesake Pappaw Jay and his Papa Perry?

At one point in the hospital, we were discussing that he had been asleep for a long time. We asked if he had any dreams. He didn't really have much too say, and certainly didn't shed any light on it for us. So we let it go.

Fast forward to this weekend. We were saying our prayers before bed which usually consist of Jay thanking God for "all my people" and for whatever random object he spies next ("Thank you God for my bed, thank you for the ceiling." You get the idea). After his prayer on Friday night, he asked me, "Where does God live?"

"Uhh...he's kind of...everywhere" was the best I could do on short notice. Thinking quickly to something we learned from our favorite children's minister LL, I asked him, "Where do you think God lives?"

He replied with the less theological, but much more obvious answer, "At his house." Then I got, "Daddy, where is God's house?" I considered the sky or heaven, but went with "Church," which seemed to be in line with where he was going. Next up on the wheel of two year old theological questions was, "Can I go see God?" I was thinking, "Jay you have come closer to shaking his hand than you may ever know," but I figured I shouldn't go there, so I said (ambiguously), "Yeah, someday."

You know where my mind was going, so I had to ask, "Have you ever seen God before?" Surprisingly, he responded, "Yeah." Intrigued, I asked, "Where?"

Wait for it.

Any preachers out there, this is going to be your next sermon.

You know from the mouths of babes, and all that.

His response...

"On our roof!" He got really excited and then added, "I helped him down, and he gave me a big hug!" Either he's got a great imagination and doesn't remember anything about the time he was unconscious or it really was a lot of fun hanging out with God Almighty "Up on the Roof." Either way, I'll sleep better at night.

It's just another ordinary miracle today...

Life is like a gift they say
wrapped up for you every day
open up and find a way
to give some of your own
Isn't it remarkable?
Like every time a raindrop falls
It's just another ordinary miracle today
-Sarah McLachlan, Ordinary Miracle
(great song - watch the video if you don't know it!)


Over the past 6 weeks, Jay has seen quite a few miracles. I don't mean to trivialize open heart surgery, but getting a new heart valve that works as good as new was one of the smaller miracles he survived. When Jay arrested the night after his surgery, they performed CPR on him for well over an hour, and continued doing chest compressions WHILE the surgeon placed the cannulas in his neck for bypass. Just imagine that for a second - trying to cut open a tiny vein and an artery just a few inches from where someone is pounding on his chest. Miracle.

The following day the attending cardiologist was discussing what had happened during the incident. (One nurse spent the entire time writing down everything that they did to save him and every drug he was given. Jay was still connected to the monitors, so they had a complete record of his blood pressure, etc. the entire time.) His oxygen saturation never dropped below 70% during the time they were performing CPR. While 98-100% is normal, there are people walking around living normal lives with oxygen sats in the 70s. Pretty impressive work.

Derek and I were talking about all the things we see differently in hindsight. When the surgeon came in on ECMO day 2 and asked them to turn down the sedation, he was wanting to see if he would move. Looking back, we realize that he was trying to determine whether continuing on ECMO was worth it - trying to know whether his brain had gotten enough oxygen during CPR to keep him on life support.

It was no small miracle that he had no problems on ECMO. He never had any of the common issues - swelling, blood clots, ECMO circuit cutting out. And it's nothing short of a miracle that after a week of not pumping, his heart was able to kick back in when he came off ECMO. It's a miraculous technology that saved his life.

On Tuesday evening when we had finally been given the get out of jail free card, we met with our awesome CHOP cardiologist, Dr. C. She hugged us and talked about how happy she was with how he was doing. I asked her to say - honestly - whether this was the outcome she expected during the ECMO days. Her sly smile said it all, but her simple answer was as honest as I had asked her to be: "No, it isn't." She went on to say that after ECMO sometimes the heart recovers but the brain doesn't. Other times, the brain recovers but the heart doesn't. She told us that his medical team was still talking about what a miracle it was to see him laughing and talking and trying to jump down the halls of the CCU.

I don't think we really expressed on the blog just how serious the heart transplant discussion got toward the end of the ECMO week. While he tolerated ECMO very well, seven days is really pushing the limits of how long it can provide support. They were getting ready to order a Ventricular Assist Device, the Berlin Heart, in the event that his own heart function didn't recover. The VAD is designed as a bridge to transplant - a machine to support the heart while you wait (days or weeks or months or more) for a transplant. That thought was terrifying to us. The thought that another child would have to die so that ours could live ... it's just awful.

From this:

To this:


Miracle. There's no other word to describe where how we got here. It is truly a miracle to have our son back the way he was before this awful journey began.

My blessings are in front of me...

it's not about the land
I'll never beat the view
from my front porch looking in
-Lonestar, My Front Porch Looking In

With some help from AJ and Poppper, we successfully packed up all the stuff we've accumulated over the past 6 weeks and returned HOME! Not only was it great to come home, but a wonderful group of friends cleaned our house and stocked our fridge. Unfortunately, unloading our 6 weeks of stuff has hidden the carpet they worked so hard to vacuum. We have some amazing friends.

They also converted Jay's crib into a toddler bed, so that it will be easy for him to get in and out of bed as he continues to recover. He's still on "sternal precautions" (for some reason, I find that term amusing) which means we can't lift him under his arms. At his age, it's time to move into a big boy bed anyway! I was a little worried that he wouldn't like it, so we told him that his 4 year old idol, T., had fixed it for him. It was kinda true - T. was here during the bed conversion, though I suspect he was busy exploring Jay's toys rather than working. When Jay woke up from a nap this afternoon, he wanted to call and let his buddy know that he liked his new bed, so I guess he's not mourning the loss of crib sides too much.

People kept telling us that Jay's appetite would come back when we were home. But I didn't really expect it to come back the instant we walked in the door. All he's been willing to eat in the last week or so is meat. No lie - when we ordered spaghetti with meatballs in the hospital, he ate all the meatballs and ONE strand of spaghetti. At RMH, he ate nothing but hotdogs. He wanted them for breakfast. (We want him to eat so he'll stop losing weight, but I draw the line at hotdogs for breakfast.) But as soon as we got home, he said "I'm hungry!" and ate a regular lunch of deli turkey, black beans, chips & salsa, chicken salad and a banana. (I never said his combos weren't a little weird, but at least there's some non-protein options in there...!) So I'm hopeful that the appetite really is back, and the good food habits will return as well.

Luke is now re-learning how to fall asleep, thanks to a bit of baby boot camp. While I hate to call it "cry it out," it pretty much is. We've let him scream for 10 minutes, go back and settle him down, then put him back into the crib. Wash, rinse, repeat. Took him an hour to settle for his nap this afternoon, but only 55 minutes to settle at bedtime. Progress is progress, right? We are open to suggestions if any of you baby whisperers have tips on how to break a month and a half of sleep spoiling.

As for me & Derek, we've never been so happy to plop onto our couch and watch some Wolfpack football on our own TV. We've done the most mundane things - sort the mail, pay a few bills, pick up some cat food at the grocery store, feed the kiddos some dinner. It's almost like we never left.

Home...

Where my thought's escaping
Home
Where my music's playing
Home
Where my love lies waiting silently for me
-Simon & Garfunkel, Homeward Bound

Homeward bound!! I can't even begin to tell y'all how excited I am to be headed to the airport in the morning. (and I'm even more excited that my dad and my AJ get to be the ones who figure out how to jam all this stuff into the CR-V!) Derek and I are flying with the boys since the docs thought it would be less stressful than an 8+ hour car trip. And they were probably right - though it's a bit odd they're concerned about my stress level. Oh wait, it is probably less stressful for Jay, too.

The area where CHOP is located is known as University City, and it's squeezed in among Drexel University and UPenn. On our pre-op visit, Jay was super-excited about the Drexel Dragon, named Mario (an interesting little tidbit we learned from one of our fab nurses who graduated from Drexel). He wanted to ride it, and we told him that we would when he was out of the hospital. (Who knew that would be nearly 6 weeks later!) And without even our mentioning it, Jay started asking in the hospital to "see that dragon." Who are we to deny a kid such a simple pleasure?


Gimme 5, Mario!

After our dragon-slaying adventure and a nap, we decided to have a little family fun and check out the Philadelphia Zoo. We've now experienced the first zoo in the country, the first children's hospital in the country, and the first Ronald McDonald House. Boy, lots of firsts in Philly! We had a great time in spite of the fact that the zoo (and it's parking!) are way overpriced. We saw all kinds of rare animals, but Jay insists that his favorite part was the ducks. Yes, the Canada geese we saw on the pond in the middle of the zoo. The same Canada geese we despise in our parking lots, our golf courses, our lakes in good ol' NC. Guess the kid just wants a taste of home.


Truly, it is simply a miracle to see how far Jay has come. He is walking (a bit wobbly but improving), talking up a storm, and is in every way the adorable, lovable, awesome little boy we brought here with us. Tears of joy.

So, we're headed home tomorrow and can't wait to see you all again!

Cause I live and breathe this...

PHILADELPHIA FREEDOM!!
Elton John, Philadelphia Freedom

Does the song say it all?! We're free!!!!

Late yesterday afternoon, we finally got the results we'd been waiting for, and it was happy news!! Jay's INR was 2.58 - which is not only above the 2.0 they were looking for but in the range we've been aiming toward all along!! Hallelujah! Have I used enough exclamation points yet?!?! I don't care!! We're free!!!

From then it was a complete whirlwind of getting prescriptions ordered at a compounding pharmacy in Raleigh, getting enough meds to tide him over for the next few days, discharge instructions, frantic packing of the stuff we'd accumulated, and saying goodbyes to some amazing folks we met there. I was not prepared for how emotional those goodbyes would be. I shed a few tears with some of our favorite ICU nurses, including the charge nurse who performed CPR. We are so amazingly blessed to be bringing home a healthy kid.

We're at the Ronald McDonald House now, and we're bound for good ol' NC tomorrow. We will share pictures and details soon - but in the meantime we've got to take a picture of Jay slaying the Drexel Dragon that he's been begging to see...

I've seen the needle...

...and the damage done

a little part of it in everyone

but every junkie's

like the setting sun

-Neil Young, The Needle and the Damage Done

Okay, folks - while it's Jen here writing, I must confess that I do not know this song. That's all Derek's inspiration. But we have gotten far more up close and personal with needles (and the damage they do to a 2 year old's psyche and poor little arms!) than we want.

On Sunday night, Jay started on Lovenox in the hopes that we could get a blood thinner (ANY blood thinner!) we could go home on. He is not a fan of the shot, but interestingly, the part that seems to freak him out the most is the lidocaine cream they put on to numb it. So we've taken to just giving him the shot, and being done quickly. Derek is his preferred shot-giver. Sorry, nurses. We just don't need ya anymore!

Yesterday's result? Still not theraputic on the coumadin. And still not theraputic on the Lovenox, either. So, we're still here. But we're getting closer!! The INR finally broke the 2.0 level yesterday. (For my Wolfpack friends, I couldn't help but think that if he was a kid working to raise his GPA, he's be off suspension! We're looking for solid B level work, but we'll take getting off suspended status. Can ya tell I'm anxious to get back to the work world?!)

Unfortunately, we're still waiting to see what the INR is today. The phlebotemist who came in this morning stuck him twice and got nothing. The doctor who stuck him an hour later stuck him twice and got ... slightly more than nothing. But still not enough to run the test on. So, now we're waiting for stick number five for today and praying (PRAYING!!!!) that they can get some blood and be done.

It is seriously the most pitiful thing I've ever seen. He's sobbing and between cries says "It almost done? It almost done? Then it will be all over?!" Breaks my heart - and that of the nurse too. Didn't seem to slow down the phlebotemist. Sadistic old bag that she is.

Our home-going depends on this test. If it's over 2.0, we could at least take him with us to RMH for a couple of days. If it's not, we're still held hostage here for a bit longer. Sigh.

Give me one reason to stay here...

...and I'll turn right back around.
-Tracy Chapman, Give Me One Reason

There is just ONE reason that we're still here ... coumadin. Or, more accurately, the fact that Jay seems to be hiding his coumadin in his armpit. It takes a while for some people to get to a theraputic dose, but apparently he is immune to the stuff. They have been giving him coumadin every day for at least 3 weeks ... or maybe it's been 4. (Things are starting to run together as we enter our SIXTH week here at CHOP. Oh my...) I'll go with 3 since it makes me feel better.

So, yes that means that every day for the last 3 weeks our friends (cough, cough) from phlebotomy have come in at 6:30 a.m. to draw blood. How's that for a fun way to start your day? Every single day? (They start early so that the INR level is back by the time they do rounds.) They are aiming for INR between 2.5 and 3.5. So far, Jay hasn't broken the 2.0 mark. Until he's in that range, he has to stay on Heparin, another type of blood thinner.

Problem is that Heparin leaves your system very quickly, so he has to be on a constant infusion. So we drag around the lovely blue pole with one little pump of Heparin everywhere he goes. And while I'd love to be able to drag that pole right onto the airplane and figure it out at a hospital closer to home, so far they aren't going for that idea.

They idea that they are now willing to consider is also not particularly fun. Starting tonight, Jay will start on Lovenox shots twice a day. They will give him those tonight and tomorrow, then check to see if he's theraputic on yet another anticoagulant. (Third one's a charm, right?!) THEN they'll decide if we can do those shots on our own. At H - zero - upside down W - letter on the eye chart. (While Derek has mentioned heading to the H-place publicly, I'm not saying the word until we've got the boot!)

I can't tell you how frustrating this whole enterprise has been. I am starting to feel like a hostage here. This morning, I just wanted to scream, "Why are we continuing to do the same thing and expecting a different result?! Why are we throwing larger and larger doses of medicine at the problem with no improvement?! Why can't we work this out in NC?" But a blood clot on the shiny new mechanical valve would be bad. Really, really, really bad. Like surgery to replace the valve bad. So, I am digging very very deep in my well of patience to try and suck it up another few days. But that well is running awfully dry.

Sing us a song, you're the piano man...

Sing us a song tonight
Well we're all in the mood for a melody
And you've got us feelin' alright
-Billy Joel, Piano Man

Hi folks - Luke here. Everybody else in the fam has gotten to write on this blog, and I've finally convinced mom to give me a turn. (Jay hasn't written in a while, but he's been pretty preoccupied lately.)

I got to tell y'all, this Ronald McDonald House is the place for me. Seriously, people here adore me. The RMH volunteers all come to visit me and ooh and ahh over how cute I am. They make lots of comments about my sticky-up hair ... something about a mohawk? I dunno - my hair just does this. Most days, I hang out in this super cool playroom and play the piano. WITH MY FEET! My mom seems surprised at my talent, but really, it isn't too hard. Check me out:



You can't see it too well, but there's a microphone on the side. And boy can I sing! In fact, I can get the entire microphone in my mouth and can still sing around it. I have a pretty big mouth. Mom says I got it from all that grinning I do. I'm a pretty happy guy, what can I say? Of course all that time I spend with my mouth wide open and smiling also means that I do a fair amount of drooling. People keep asking if I'm cutting teeth (not sure what teeth are, but mom says I'm not cutting them). Mom and these rotating grandmothers pretty much keep a bib on me as a fashion accessory because I do like to soak things with my drool.

I really like to eat here, too. When we left Raleigh, I was just eating a little bit of baby cereal. I mean, it's cool to get something other than milk now & again, but that stuff tastes and smells like wet cardboard. I eat it, cause I pretty much eat anything. But it's not my favorite. My favorite is Mangoes! And bananas! And green beans! And peaches! And carrots! And sweet potatoes! I pretty much love it all. Oh, I'm getting excited just thinking about food - and thinking about it makes me drool, too.

I'm really a rock and roll kinda guy. I can roll over both ways, and now mom finds me on my tummy most mornings. I keep telling her that she doesn't sleep on her back, so why should I? And I can sit up for a bit, too. The world is far more interesting when there's something to look at other than the ceiling. I sometimes crash over when I've been sitting too long, but they usually have a pillow or blanket nearby to cushion my fall. And to catch my puddles of drool.

But the thing I like best about being here is that I almost never have to sleep in my bed. See, I'm having such a good time that I've started getting up about 1:00 a.m. every night to see if I'm missing out on any fun activities. Mom says I should be sleeping, but I'd rather not. Night time is party time!! So, to get me back to sleep, she gives me milk. And rocks me. Then, she lets me sleep in her arms, or sometimes even in the bed with her. She says these are bad habits to be starting, but she gives in because she doesn't want me to wake up the entire RMH. She says going back to Raleigh will mean "baby boot camp". And that sounds like I'll be sleeping in my own room & my own bed again. I'm not too excited about that, 'cause a boy could get used to this rocking chair.

So while I'm not too excited about that part of going home, I am missing all my friends at church and at school. I hear lots of y'all have been praying for me too, and I'm glad. You know, sometimes we second kids get kinda forgotten, especially when our big brothers need lots of remembering. But there's no forgetting this big grin!

Money...

...it's a gas.

Grab that cash with both hands

And make a stash.

--Pink Floyd, "Money"

Jay continues to improve by leaps and bounds each day. No literal leaps yet, but I don't think it will be much longer. He is walking farther and farther each day, crawling up onto the couch, and going up and down stairs. His appetite is improving, and now he is up to about 80% of his caloric needs. It's not really a balanced diet (whole milk, French fries, chicken nuggets, and hot dogs), but it is calorically dense and high in protein! It is a good thing his appetite has improved because during one of his vomiting episodes yesterday, his NG tube came up. They decided to just leave it out since they were only using it for his meds anyway.

That is why getting his meds in has become more difficult. Fortunately, Jen figured out that mixing it with applesauce and letting him drink it with a straw would be fun. He thinks it is funny to drink his applesauce-medicine smoothie, and likes to show off this trick to his nurses.

So with continued improvement in Jay's strength and appetite, and in taking his meds, they are now talking about sending us home. The only problem--they cannot find the appropriate dose of coumadin. His INR is no where near the therapeutic range in spite of them giving a dose of coumadin that should be more than enough. Apparently, this is the most frustrating part of the whole recovery (for the docs and us) because each patient reacts differently to coumadin and it has an infinite number of drug interactions. So we can keep Jay alive for a week on ECMO, but tiny doses of rat poison are the best we can do for an anti-coagulant? Come on modern medicine!

In preparation of going home (eventually), Jen and I had to attend a CPR class. Both of us had been trained previously, but it had been a while and the recommendations had changed. Neither of us really thought about how emotionally hard it would be to take the class. When the instructor started performing CPR on the child size mannequin, the memories of the night Jay arrested all came rushing back. That vision was quickly followed by the realization that we could really have to use this training. So as a follow-up to Jen's post "Help," I'll ask that everyone get certified in CPR. Not just for Jay, but for your kids or your parents or that person beside in line at the grocery store. It has been dramatically simplified in the last few years, and you can find a class near you here.

While I'm asking for things, let me also ask that you give blood whenever possible. During Jay's surgery and while on bypass, he has received 5 units of blood and many different blood products (packed red blood cells, platelets, albumin, and fibrinogen). Only because someone was willing to pay it forward could this happen. Everyone who can should do it if for no other reason than you get free cookies and stickers. You can find a blood donation site near you here.

Finally (I promise this is the end of my public service announcement), there is a radiothon to raise money for CHOP on Friday and Saturday (hence the title of this post). The phone bank is set up in the atrium here in the hospital, along with the DJs from WOGL 98.1, a local radio station. The least I can do for these folks who have done so much for us is give them a bit of free publicity. The website for the radiothon is here with the phone number and a link for online donations.

Thank you again for all your funny stories, recipes, thoughts, and prayers. Maybe we'll be able to thank you all in person soon.

All by myself...

don't wanna be

all by myself

-Celine Dion, All By Myself

Actually, Jay DOES want to be "all by myself." He's starting to turn back into a two year old -independent-minded, determined to do it his way. It's a wonderful sight to see that he wants to stand up on his own. It's just not so wonderful to see him trying to stand up in his bed. Or in the wagon as it's rolling down the hallway.

His fine motor skills are absolutely back to where they were before all this started. He's hammering away with an accuracy that would impress most professional carpenters. He is still a master with a screwdriver and is currently gripping the saw with a pair of pliers, and then using said saw to "cut" the handle of his toolbox. Occupational therapy has been so impressed that they no longer want to work with him every day. One less thing!

The large motor skills are still coming back a little more slowly. He's trying to climb and stand and jump and walk totally by himself, but he's struggling to do those things. He's just a little too wobbly to do it alone, but isn't too happy having to hold our hands. I am terrified of him falling and busting his head. Every day he improves a bit, and we trust that in good time, he'll be back to doing all of those things independently, too.

Our biggest issue right now is with his tummy. Before surgery, the kid had a freakin' enormous appetite. He would routinely eat more than I did, and he ate a huge variety of healthy foods. But he just isn't interested in eating anymore, even things that were his favorites. He's got to get enough calories for his overtired heart to continue its recovery. We are doing all kinds of happy dances to celebrate every bite of french fry or chicken nugget that he eats. (There are different dances for different foods, ya know.) And then after counting every calorie and every ounce of milk, he pukes it all back up when he gets upset over some doctor coming in and offering to remove a bandaid. Fantastic.

We'd been a little concerned about his ability to swallow, which earned him the uber-fun swallow study during naptime today (and he was so not tricked into believing that chalky-tasting barium was milk!). A week after being on the ventilator, he was still coughing when he attempted thin liquids. He had been drinking his liquids with thickener, and surprisingly didn't seem to mind. But the swallow study showed that everything is totally normal. Yahoo! So, now he can eat what he wants including regular liquids. If only he wanted to eat something...

The worst part is that he is regularly yakking up his meds, of which there are many. Tonight we spent the better part of an hour cajoling and convincing him to take his medicines in tiny little sips. (Don't want to force them down - cause that just causes puking.) Just as he took the last one, up came his entire dinner and all of those medicines we worked so hard to get down. I seriously think I saw Derek knock his head on the wall in frustration. So, then we got the fun of doing it AGAIN!

This time, we decided to hide it in applesauce. I gave him the awesome line "You have to eat the applesauce so you won't be hungry during the night!" He totally sees through every trick we can come up with, and was well aware that there were drugs in the applesauce. Oh brother. I then spent an hour and a half trying to get him to eat 10 bites of applesauce (which were hiding the 8:00 meds AND the 10:00 ones!). Just another opportunity to practice patience, I guess.

Thanks to all of you who posted funny, interesting, or informative comments here and to those of you who sent email distractions today. I can't imagine trying to go through this without the support of family, friends, and internet strangers who are praying for us and pulling us through.

Help! I need somebody...

Help! Not just anybody.

Help - you know I need someone - help

-The Beatles, Help

So many people have asked (and continue to ask!) "What can I do to help?" It's the most natural thing in the world when someone is going through a tough time ... and the truth is it's a really hard question to answer. Our physical needs are taken care of right now - we have food here at Ronald McDonald House, shelter (me and Luke's grandmother-of-the-week at RMH, Saint Derek still doing nighttime hospital duty), the basics. We've found support from other families here at CHOP and lots of great practical advice from nurses. We've got the basics covered, and being here has really reminded us of how little stuff we really need. (Of course, the pile of stuff in our RMH room might indicate otherwise ... but you know what I mean.)

Here's how you can help - and have already been helping, The emotional side of this journey is still very, very hard. We've been here more than a month now. We're all starting to get more than a little tired of being away from home, of not getting enough sleep, of being surrounded with medical talk. Keep those cheery words of encouragement coming! I can't even begin to tell you how much it means to know that you're praying for us and still cheering us on from a distance. But do you know what's almost as good as praying for us? Any 30 second distraction from this world that we're so sick of living in. Tell me about the adorable thing your kid did at school today. Share your grandma's secret ingredient for a delicious meatloaf. Describe the awesome bridesmaids' dresses at your cousin's wedding last weekend. Give us the inside scoop on the UNC football scandal. (Sorry to the 3 among my blog-reading audience who are Carolina fans. We gotta get our scoop where we can.) Tell me what you're reading in book club this month. Whatever! It is so important for us to leave the hospital, mentally or physically, for a few moments every day. And it is so daggum hard to do.

We're entering the slow rehab phase where the issues Jay is having are not heart issues but living after heart surgery/heart attack issues. Re-learning how to do everything - EVERYTHING. Over the weekend, I ran into one of the ECMO nurses that we had a few days, and he said "That's so great that Jay moved to step down!" I replied, "Yes, we're thrilled. Now if we can just get him walking, talking, eating, sleeping, and pooping again, we'll have our old kid back!" And it wasn't until that moment that I really thought about how far he still has to go to get back to where he was. We can't take him home until he's able to live a semi-normal life ... and we're not there yet. We're getting hints that we may be soon, but not quite yet.

That's not to say that he isn't making huge leaps of progress. He is walking, with assistance. Each day he walks further and more confidently. He is able to do a lot more independent movement - sit up in bed on his own, climb a couple of steps with help, eat with a spoon by himself, talk in complete sentences. They are continuing to wean down his meds, and are trying to get him to take them by mouth like he will when we do get out of here. When I remind myself that a month ago we were just praying for his heart to start beating on its own, I am truly amazed. And I am at the same time impatient and ready to take home the same ol' kid that I brought here. So, keep reminding us that while the light at the end of the tunnel is visible, we've still got the Jay Foster fan club cheering us through the dark days. And share that meatloaf recipe.

We count only blue cars...

...skip the cracks in the street

and ask many questions

like children often do

-Dishwalla, Counting Blue Cars

One of Jay's favorite activities when we get home from work/daycare is to sit on our front stoop and survey the front yard. He'll say "Let's watch some cars go by," which is actually pretty amusing because we live on a dead-end street with only a couple houses beyond ours. So unless we're the first ones home from work (which we usually aren't) then there really aren't many cars going by for us to watch. But one of us will typically sit there for a few minutes with both boys since that allows the other one of us a good 15 minutes to get dinner started without little fingers who want to participate.

But we've found a great new spot here in the hospital to "watch some cars go by." There's a big glass window area between the CICU and CCU, and you can see all the downtown Philly traffic whizzing by the hospital. Yesterday, Derek and Jay even saw me whiz by on my way to the parking lot (though Derek didn't point it out as me just in case it was some other CRV going by!). But they have been pointing out the buses, taxis, ambulances and all different kinds of cars they see. Both yesterday and today they have been hanging out there when I arrived, and it's so reassuring to see him outside of his room. Good stuff.

It was another fantastic day in physical therapy - he WALKED all the way from our room to the PT exercise lab. It's probably 20-30 yards? I dunno - I'm a terrible judge of distance. But it's a good long way for someone who walked only a few steps yesterday and couldn't even bear any weight on his legs the day before. We retrieved his crocs from RMH, so he was pretty excited to get to wear his own shoes. (Given my love of all shoes, of course I'm going to attribute this new success to the new & improved footwear.)

(Seriously, could you stand on toothpicks like that for legs?! He's gonna hate me for that pic someday.)

His voice continues to get stronger, though it is still quite weak. He's tried to talk on the phone, but you just can't hear him on the other end. Not much improvement in the eating department, either. He's all about the thickened liquids, but he's having trouble swallowing anything thin and isn't much interested in eating anything else. Except broccoli. Seriously - what kid prefers broccoli to mac & cheese, ice cream, or hamburgers? A kid on coumadin who really shouldn't eat much broccoli - that's who! LaLa says he just needs some vienna sausages ... again, not sure what the cardiologists would say about that, but we gotta get some calories from somewhere if we're ever going to get this feeding tube out.

So, as you enjoy your Labor Day cookout burgers & dogs this weekend, think hungry thoughts for us and hope he starts getting back to the good eater we all know & love.

Because you're mine...

...I walk the line.

--Johnny Cash, "Walk the Line"

It has been a whirlwind of activity in the CCU this morning, so I actually had bit of a hard time narrowing down the song choice for the title. I first considered "Fireman" by George Strait since Jay went for a long ride in his firetruck. He quite enjoyed waving to all the nurses and other parents as we rode along. All we needed was the Helping Hand Mission Band and we could have had a parade. We even saw one of his old docs from the ICU who commented, "He looks really good when he's not stoned!"

Then we ran into the physical therapist. Jay hasn't been terribly cooperative during PT the last few days mainly due to poor timing. By the time they have come by in the afternoon, he's gotten all his noon drugs and is just zonked for the entire afternoon. So today, she asked if he wanted to take his firetruck to the therapy room to play right now, and he enthusiastically nodded. The next song I considered was "Gone Fishin'" by Chairmen of the Board because we started out sitting up on a bench fishing for some magnetic fish. Popper would have been proud of all the fish Jay caught--maybe he should consider switching to a magnetic hook?

The next song could have been "Stand" by REM. Jay stood for about 15 minutes with some help while we played another game catching ducks as they swam on a little plastic pond. Jay thought the fishing and ducks were pretty fun, but what he really wanted to do was "ride my bicycle" ("Bicycle Race" by Queen). Not really a bicycle, but a perfectly sized tricycle. After getting a helmet for the noggin', he rode 3-4 laps around the therapy room with some help from the therapist.

After crashing into the wall, we decided it was time to get back into the firetruck and head back to the room. But the truck was across the room...

...so we walked over to it! There was definitely some help, some missed steps, and lack of coordination, but for his first steps in 3 weeks, it was pretty darn impressive!

About this time, LaLa came to visit and helped Jay eat almost a whole bowl of Cheerios and drink a carton of milk. While eating, he introduced her to all his friends from church who were in the photos that we received this week. He was quite sorry he missed the swimming and pizza party and is hoping there will be another one soon!

The last activity of the morning was visiting the play room where they were having music therapy. So we joined "Uncle John's Band" (Grateful Dead) for a while. Unfortunately, Jay doesn't have any more rhythm than his dad, but he really enjoyed playing the drum.

Jay had another echo yesterday, and the big news is that his heart function is now low NORMAL! Still low, but now low-normal. In numeric terms the percent change in size of his left ventricle between contraction and relaxing (fractional shortening) is now 24% with 28-32% being normal for his age. This is a significant improvement over the previous weeks, and they expect that his heart function will continue to improve to completely normal over the next 1-2 months. His coumadin dose is almost therapeutic and they continue to decrease his morphine and amioderone (anti-arrhythmia medication). His pneumonia and phlebitis are resolving quite well, and he should come off his antibiotics in the next couple days.

All in all, a great morning, and if he keeps up this pace, we may be seeing you all again sooner rather than later!

I'm back...

...in the saddle again.

I'm back!

--Aerosmith, "Back in the Saddle"

So after abandoning Jay and Jen for a couple days while I recuperated at the Sheraton, I'm back and feeling better. Not 100% yet, but much better than a few days ago. Sorry for the lack of updates, but I had no computer access and Jen was just too busy.

One good thing about me being gone for a couple days is that I can tell how much Jay has changed in those few days. When we're here with him all the time, it is hard to see how different he is each day. The changes are just so small and incremental--kinda like watching your kids grow up.

So what's different? His voice is getting stronger (still a hoarse whisper, but now a louder one), and he is using more sentences. He would still prefer to grunt and point, but if we ask him what he wants, now he is more willing to us. His hand-eye coordination is improving as is his upper body strength. The shakiness that he had over the weekend is also gone, but it may come back as they further decrease his morphine and Valium. The occupational therapist placed toys around on the floor and made him lean from a sitting position to get them, and he was able to do it without falling over, so his balance is getting better too.

One the digestive front, he still has a big, gassy belly. They are now going to turn off his NG tube feedings during the day to let him eat on his own. Today we had bacon, tater tots, strawberries, peaches, yogurt, and applesauce for breakfast. Gotta love a cardiologist that lets you have bacon and tater tots! Unfortunately, the bacon was a bit too much to chew, but the rest went really well. So, he's off pureed foods and now on to soft foods. Pasta and mac and cheese here we come! Liquids were still challenging, so he is going to get thickened water and juice to drink for a few more days.

On the cardiology side, he is continuing to improve as well. He did have a brief period of arrhythmia on Monday night, but hasn't had any since. So after a brief pause, they are continuing to decrease his amioderone. They're still working on the appropriate coumadin dose, so for now he is still getting an infusion of heparin, which means he's keeping his PICC line. The biggest change today has been that he is now off oxygen, and so far so good.

Overall, slow steady progress, but no discharge date on the horizon yet. It is both hard to believe we have been here 3 weeks already, but also it seems like we've been here forever. Hopefully we'll back in Raleigh before too much longer, and can get back to some semblance of normal. Thank you for all your thoughts and prayers for Jay (and me).