Cardiologist Update

It's been two months since we took Gabe off his Carvedilol.

Warning: Extremely Basic Explanation of why Gabe was on this medication:

When the heart pumps, it squeezes all the way and pushes all the blood out.  Gabe's was only strong enough to squeeze a little bit and couldn't get all the blood out so it pumped double (more like triple) time to get enough blood out to keep his body going.  This was a smart solution for his little body, but would end up wearing the heart muscle out very quickly as he grew, thus landing him on the transplant list.

He had been on this medication for a couple of years.

Some of you may remember that back in 2012, we were told Gabe wasn't a candidate for the Fontan surgery and would have to go on the transplant list for any chance of survival.  Then the doctor decided to try this medication and, while we aren't sure if it was the medication or just his heart getting stronger, he became a candidate for the surgery and the rest is history.

Since the Fontan surgery, he's done awesome.

Like for real.  You would never ever know he has half a heart if you didn't know.  His new cardiologist is blown away every time we see him.  Which is why we have been slowly weaning him off medications.  Many of these pills may very well have been needed pre-surgery.  But post-surgery, we want him on as little as possible.  Many of these medications he will need in the future.  So getting him off of them now if he doesn't need them will reduce the risk of him having a tolerance for them later when he actually does need them.

We've reduced 3 so far with no issues.

But this last one has felt different.

I got booted from the bedside seat.  Big Sister was his hand holder of choice.

It's tricky because, for a HLHS kid, Gabe is a beast.

T-ball, biking, running, not needing any resting.  He does more then he really should be able to.  But to us, the ones who know him best and see him everyday, he's just off the past couple of weeks.

His teacher says he says he has a headache a lot and he needs to lay down quite a bit at school.  We went on a normal bike ride last week and he struggled bad.  He's grouchier than normal and super tired by the end of the day.

All of which could be explained by starting kindergarten, a Summer of not being very active outside, and a few strings of later than usual nights.

Or it could be his heart telling us he's headed for trouble.

So we headed in to the cardiologist yesterday to see what was going on in there.

Since it was a somewhat emergency, we weren't able to see his usual cardiologist.  I was kind of glad because I wanted a second opinion in taking him off the meds.

The appointment went great.

His ECHO was showing strong heart function and all of his pressures are still awesome.  The doctor thinks that what we are seeing is just what it looks like for an HLHS-er to be growing.  He recommended just going with his lead and allowing rest when needed.

And like a real son of a gun, this past few days he has been back to his usual wonderfully active self.  He even got an exceptional behavior certificate yesterday at school.  His teacher said he was like a different kid.  So here's to hoping he keeps this up!

To Live Like Aaron

Yesterday Gabe had his best cardiologist appointment to date.

I expected nothing less since the child is honest to goodness going at full speed from the time he wakes up (at 6:15 every. single. day.) to the time his little curls hit the pillow.  He runs and bikes and swims for hours on end and even when I convince him that watching a little TV would do him (e.i. me) some good, he still fidgets and wiggles and drums on everything in reach.

His ECHO results were fabulous and all his numbers were exactly where they needed to be.  His doctor, that I love, thinks that he's ready to come off another medication.  Music to my ears.

The doctor was so positive about it all, that I mustered up enough bravery to ask a question I haven't been ready to ask - What exactly does Gabe's future look like?

I know that he didn't want to answer me.

We'd just had this great, uplifting conversation and now I was asking for him to pop the bubble, give me a dose of reality.

He sighed and gave me the rundown:

The Fontan will work wonders through his teens.  We'll barely notice a difference between him and other kids.  He can't play Varsity sports, which will be a huge bummer to my sport loving boy, but he'll be alive so it's a fair trade.

In his 20's, we'll notice him slowing down, but with rest and medication modifications, he will be alive so again, a fair trade.

The 30's are when Gabe's outcome starts looking bleak.

Survival past 40, unlikely.

40.

Just a few years longer than my brother walked this Earth.

And as the doctor kept talking, about medical advances and stem cells and how long 35 years is in medical terms, I couldn't get that number out of my head.

I sent up a fervent prayer: "Please God let him blow that number out of the water."

But the prayer I offered up on the heels of those words is the true prayer of my heart.  And not just for Gabe, whose future is unclear, but for Josie and Andrew and myself and everyone that I love: "Let him live like Aaron."

Let him be cool without flaunting it.

Let him be accepting of all people, an instant friend to many.

Let him hold those he loves the closest.

Let him be funny and let his shoulders shake when he laughs.

Let him drive his beat up car across the country to go to concerts and ride the country's highest roller coasters and name weekend parties after himself.  Let him be brave enough to do all those things that I never did.

Let him find a love story that will inspire everyone that hears it.

Let him be funny and a bit sarcastic without being biting.

Let him find his art and his voice and, when the day comes that we know the end is near, let him decide to not go gently.  Let him decide he will live, and live well, every damn minute he gets.

Let him live like my big brother.

Let him be my hero, my inspiration.

Today I'm boarding a plane to fly up to Minnesota.

We are going to carry out Aaron's request to lay his ashes in the river where we grew up playing.

This weekend will be a different kind of hard.  My emotional stuntedness had me numb at his funeral.  More concerned about how everyone else was feeling than about my own heart breaking under my ribs.

But now, 9 months after he died, I feel it everyday.

There aren't many songs I can listen to that don't make me think of him, mostly because I know he'd hate them.  I hold my breath when it hurts and have to remind myself to exhale.  That it's OK.

I'm glad that I got to look up to Aaron for 32 years.  That he led the way.  I miss him every second.

And I want to live like him.

His Little Ticker

It's been a year since Gabe's surgery.

I can't decide if that feels like yesterday or an eternity ago.

Maybe that's just how it is with things that monumental.  

I look at him today; running, playing, talking all the words.  The boy honestly never, ever is still until he goes to sleep at night, where he falls asleep fast and hard and wakes up ready to tackle the new day.  It's unbelievable to think that he only has half of a heart.  One ventricle doing all the pumping and oxygenating for that busy body.

We are under routine maintenance care now.

Going to see the cardiologist every three months for now with hopes of cutting back even more in the near future.  Last week we had one of those visits.

Finding a cardiologist out here has been trickier than I expected.

We found one when we first got to Arizona that was good, but we ended up switching insurance and that doctor wasn't on the new plan.  We ended up not really knowing who to go to, but after some hunting, we found a doctor just in time for his second Arizona appointment.

Obviously, Gabe's case is complicated.  We want a great cardiologist that we can stick with until he ages out of pediatric care.  His new doctor walked in and just had the Grandparent-esque feel to him. Gabe loved him, I loved him.  And bonus, he wants to immediately start working towards getting Gabe off these diuretics.  

umm, when did my daughter get so big?!?

Nothing new to report.

We go back in May just to assess how he is doing coming off the meds.  So glad to be in the part of this where we aren't waiting for a shoe to drop at all.

1st Fontan-versary

One year.

One magical, adventure filled, strong hearted year.

One year of red lips and pink nail beds.  Of O2 stats at 99.

Gabe runs and plays hard.  We've come to expect the look of disbelief when people see his scar poke out of his shirt and we tell them what it's from.

Sometimes I look at him and think, "Good Lord kid.  you only have half your heart!"

How are you alive?  How are you hugging me and talking to me in that little munchkin voice?  How do I get to keep you?

I remember this moment.

The first time we saw him after doctors cut his chest and broke through his breast plate.  When his eyes were so puffy he couldn't see and blood flowed through the tubes.

I remember his screaming in terror from the morphine induced nightmares and not being able to hold him.  I remember telling him he couldn't have a drink as he begged for water.  I remember hours that turned into days and honestly not having a clue if the sun was up or what day it was or when any of us ate last.

And then I remember watching my baby boy recover.

Beat every odd I had placed on us.  He'll never walk that soon.  He can't play or talk or eat.

But he did.

So fast.

And even though it wasn't an ideal recovery and he hit setbacks and, God, was it scary, he did it.

Gabe did it.

I'll never forget the way those two weeks in the cardiac unit felt.

Every up and down.  The desperation to be home and never wanting to not have nurses there to help.  The frustration and anger and hope and peace.

I'll never forget watching Gabe come back to life.

Gabe's life was saved one year ago today.

And that's a day worth celebrating.

if you're a hlhs mom or know one, i'd absolutely love to connect with you.  these kids are amazing.

Bits & Pieces

Can you believe October is half over?

I'm a bit excited because the end of October signifies some fun stuff for us.  Not only do I get to eat all my kid's Reese's Peanut Butter Cups, but I've been promised that Halloween is when the weather starts staying perfectly perfect.  Oh yea, and it's when my family starts rolling into Arizona for the Winter!  I may be scheming ways to be with them every day without wearing out my welcome.

Anyways, we are headed to the state fair today and I'm planning to do a lot of eating.  So while I go find my stretchy pants, here some bits and pieces of life from this past week.

It's been gorgeous here.

Last week we had one day in the high 90's, but since then it's been high 80's to low 90's with no humidity and a wonderful breeze.  Not quite the Fall of our past, but I've been able to leave the air off and the windows open so I'll take it.  It's funny how fast we all forgot the grossness of Arizona Summer once it went away.

Let us commence the next 7 months living outside.

josie's jeans and long sleeves are totally unnecessary.  it's cooling off, but not that much.

Need a good devotional?

I bought this one after reading "Give Them Grace" and it's a great one.  We have been reading one of the stories and questions during breakfast each day.  It's quick and to the point and perfect for young elementary kids.  Gabe answers every question with random facts about football, but God's word never comes back void, so I guess he's still getting something out of it, amiright?!

School and sensory tubs and doors open and clown suits. 

These are a few of my favorite things.

Fall is for baking.

This day it was whole wheat pancakes.  With chocolate chips.  Because life is about balance.  Last night I ordered a whole wheat bun on my bacon cheeseburger and the server audibly laughed at my refusal of a white bun.  Listen dude, I get it but it makes me feel better so lay off.

I want to be a mom that encourages her children to play music.

Really I do.  But this thing is loud.  Maybe lessons outside the home are more my speed.

Gabe had his first appointment with his new cardiologist yesterday.

I hate change and this office did things a bit different.  Nothing major, just little things like putting the EKG stickers in different spots.  I'm sure that has no bearing on the results, but it made me miss our old doctors.

Most of my nitpicking ended pretty fast when a big, beautiful 100 popped up on the pulse ox monitor.  I know a lot of you don't get what that means to us, but before Gabe's last heart surgery, he never, ever, ever hit about 86 on his Oxygen levels.  So a full, normal 100 was exciting!  The Fontan is working!

The ECHO showed that his heart function (his heart has always had trouble fully squeezing with each pump) is improving.  That was also pretty exciting.  This new cardiologist was awesome about explaining things to me.  He had me sit right next to him as he looked over the ECHO shots and showed me what everything was we were looking at.  I've been a Heart Mom for 4 years now and I've never understood what's going on in his heart as much as I do now.  I'm thinking this doctor is going to be good for us.

We celebrated with Subway.  I keep trying to convince him to step up his game when I say we can eat wherever he wants, but Subway is his jam.

The only hiccup in our appointment was that Gabe still has a Junctional Rhythm.

In extreme layman's terms, that means the electric waves in his heart don't follow the path they are supposed to which can lead to some yucky stuff, including the need for a pacemaker.  We learned he had this a couple of years ago, but it was minor enough that no action was needed.  Our new doctor doesn't feel like it's any reason for concern, but wanted to get a good baseline reading so he sent us home with a 24 hour Holter Monitor.

Basically, he hooked Gabe up to a mobile EKG machine and handed him a cell phone that transmits the data back to a monitoring service.  As you can see, Gabe is pretty stoked about his new phone.

sometimes i look at my phone like this too.

We did this when Gabe was 2 (minus the cell phone) and I was pleasantly surprised at how well he did not messing with the wires and transmitters, but was skeptical about how it would go this go round.  But he's doing awesome.  He's pretty proud of it and checks his phone for "twext massages" on the regular.  He even wore it at t-ball last night.

I'm expecting the results to be perfectly fine and we will resume life as usual.

Time to head to the fair!  

Have a good Wednesday friends!

Our First Goodbye

Last Wednesday, Gabe had his last heart check in Georgia.

It was a little bit of a tear jerker.

I love his cardiologist so, so much and trust her completely.  It's hard to imagine starting over with someone who hasn't watched his little body perform miracle after miracle.  The new doctor won't be as amazed at his pink lips or 99 O2 stats.  Dr. Streiper has talked me down from many ledges and never once made me feel crazy for asking my strange questions.  She loves Gabe and puts up with his very, very active self during our long appointments.

She pointed me towards the most patient doctor on her list of suggestions as we walked out the door.

Bless her.

 

This visit wasn't technically needed since he just went in last month.

But last time, he really didn't want to do an ECHO, but before she released him to another doctor she wanted to get a peek at what was going on in there.

I'll be honest, I was a wreck at this appointment.

With everything going on with Livi, I'm already on edge.  Add that to not having an ECHO since right after we left the hospital and I had all kinds of ideas running through my head.  He's been sweaty and a bit clammy lately.  And not eating as great as he had been.  All hints towards fluid accumulating in his chest cavity again.

But she gave us the all clear.  His blood pressure and stats were all great and he is growing.  Slowly, but growing.  His heart function (squeezing) isn't great.  It's not awful, just not where they were hoping it would be post Fontan.  She thinks that this may just be how his heart is going to be and since it obviously isn't slowing him down at all, she isn't concerned.

As we walked out of her office and down the hall it hit me.

This is it.

Our first goodbye.

I turned around and walked back in, looked her in the eye and said, "thank you."  And those two little words got me all choked up because, man, they just don't cover it.  We hugged and said goodbye and walked out the door.

Since then, I've had a hard time keeping my thoughts straight.

I feel like it was moving so slow and now all of the sudden we only have single digit days left.  We've sold all of our big furniture and reserved the uhaul.  We have airline tickets purchased and everyday the house is more and more empty.

I'm so super excited, but man, leaving is harder than I expected.

3 Months Post Op

Kind of hard to believe it's only been three months since Gabe's Open Heart Surgery.

It seems like a lifetime ago.  So much has changed and he is just so, normal.  Part of me thought that life would never be the same after surgery.  And while that technically is true, it has nothing to do with his heart.

From where we sit, here on the outside of his body, Gabe is doing excellent.

He is active and eating like a beast.  He stopped puking up his meds about 6 weeks ago and has gone back to taking them without any issues (thank the Lord!).  He's growing well, probably from the excessive amounts of food he's eating.  Sleep is tricky, not because of his heart, but because he wants to stay up late and gets up by 6:30 in the morning every morning.  Bless it.  We're back to that glorious spot where, if you didn't know already, you'd never guess he has such a huge heart defect.

And even though I see all this outward evidence on a daily basis, I still get a little jittery the day of a heart check.

We went in yesterday for a normal cardiology appointment.  Josie had stayed the night with Andrew's Mom, so he and I had a nice morning together and headed out around 9 for his appointment.

This one was quick and to the point.

He just had an ECHO so he didn't have to do that and, since he's such an expert at the steps in these visits, they were able to get all his stats pretty quick.

His Oxygen level was an amazing 99.

Yea, as in 1% off of a normal kid.  He's such a rock star!

He weighed in at 33.6 pounds and has grown to 3 feet, 2 1/2 inches.

The Doctor listened to his heart and said he sounds great.  We took him off the midday diuretic with the caveat of needing to watch him closely over the next month for signs of fluid build up (shortness of breath, not eating, lack of energy, blueness).

And that was it.

She wants to see him one more time before we move so we will head back in a few weeks.  He'll get a full work up that day before she sends us on our way.

We celebrated his clear chest cavity with a sub as big as his head and, of course, his favorite Doritos.

Gabe's Ticker

Last week, Gabe had another follow up appointment at the cardiologist.

This appointment was planned before he had the fluid build up that landed us in the CICU a couple weeks ago.  We go to a small office where everyone there knows us and each person commented on the stark difference between that day and the day we came in for the fluid.  He was hopping all over the place, making everyone laugh.

He's an old pro at these appointments.  The tech doesn't have to do a thing.  Gabe knows what goes where and what buttons get which numbers.  I'm not sure if that's sad or adorable, but it sure makes for an easy appointment.

I love Gabe's wonky toes.

holding super still for the EKG

sassy little thing

His chest sounded great.

We did an ECHO just to make sure there wasn't any fluid trying to creep back in.  There is a small sliver located just below his heart.  The doctor said that, if it weren't for Gabe's history of being so stubborn getting fluid off, this would be a totally normal finding.  But since he has had issues in the past, we are going to keep an eye on it.

Other than that, everything was great.  She lowered one of his meds.  Yay for not having to wake up at midnight for meds!  He is still on some heavy diuretics, which results in a lot of potty breaks everywhere we go.  After having to change sheets 3 times a day (once at nap, twice during the night), we switched from pull ups to pull ups lined with a pad and a puppy pad on the bed.  That still wasn't keeping his sheets dry.  Finally I tried those overnight diapers.  He isn't a fan of wearing diapers, but glory, it's keeping the bed dry.  God bless the maker of waterproof mattress covers.

We go back in one month, which should be our last appointment here in Georgia.

Quite a few people have asked how his care will be effected by our move.

This was a major variable in our decision to move.  Gabe has done so well overall and we want to be sure it stays that way.  Atlanta ranks the 4th best children's cardiology in the country and Phoenix is 5th.  Gabe's cardiologist was very sad to see him go (seriously, who doesn't love Gabe?), but had no reservations about him switching doctors.  At our last appointment, she gave me a list of cardiologists to research and at our June appointment she will set us up with a referral.  As soon as we get out to Arizona, we will meet the new doctor and proceed as usual with his heart checks.

For now, we are enjoying his majorly increased energy and trying to keep up with his appetite.  Dude is eating constantly!

We love our Heart Warrior something fierce.

My Baby Is Home

Last night I looked over at Andrew and smiled.

We did it.  We survived our first unexpected hospital stay.  Friends stepped up to the plate, family rallied.  We were able to spend five days sequestered inside the walls of the hospital without losing too much of our sanity.

obviously impressed with each other.

Andrew and I switched places on Monday.

I cried the whole way home.  The amount of guilt I felt was heavy.  I felt like I lost either way.  Guilty for leaving him there, guilty for not going home to Josie.  After about ten minutes, I was done feeling sorry for myself.  I realized this is what it is, hard.  There are no easy fixes, no outcomes where I do it all.

I walked into a totally clean house and found my favorite wine and ice cream and instantly fell a little deeper in love with Andrew.  The guy knows the way to my heart and that's through high calorie groceries.

Josie got home from a weekend at the lake about an hour after I did.

Girlfriend was exhausted.  I watched as the shell she'd put up to deal with the unexpected unknowns from the past five days started to crumble.  She cried hard.  She had been so brave, such a big girl, but coming home brought all the worry to the surface.

I understand the feeling exactly.

One hot bath and a back rub later, she was fast asleep.  I'd like to say I joined her, but I couldn't sleep.  To much going on in my head.  I stayed up way to late enjoying the presents Andrew left me.  Nothing like a pint of Ben and Jerry's before going to bed at 2am.

Andrew's night resembled mine.  

I didn't get full details, but word is, they had the perfect guy's night.

Late night playing video games and eating pizza and nachos.  I laughed that I ever questioned leaving him.  A night with Andrew was just what the doctor ordered.  I'm sure a break from his overly doting Mother was exactly what Gabe wanted.

Especially since I got a call the next morning that the tube was coming out.

Finally.

Andrew is a total guy, so again, no details on how the X-ray looked or any explanation on fluid levels.  Just that it was coming out and if the X-ray that evening looked good, Gabe could be home in time to sleep in his own bed.

Eight hours later, I tucked my baby into his bed.

Snug and cozy.  I lingered at the door a little longer.  Just a bit more thankful than I'd been before.  Sometimes I forget what a miracle it is to have these kids under my roof.  Safe, loved, and free from fluid in their chests.

Gabe is feeling great.

He is back to his usual silly self.  The only sign that he was in the hospital at all is the sticky residue from all the monitor leads.  That junk never comes off.

Thank you again for loving Gabe so well.

Your kind words and prayers were felt and helped me get through the days I was sure I wouldn't make it.  This little place on the internet means so much to me and it's because of you.

Here's to hoping we don't see the inside of the hospital for a very, very long time.

Popped Bubbles

Gabe is doing awesome.

I wasn't sure he'd be able to turn Friday's nasty attitude around, but he woke up Saturday morning a new man.  He's been happy and funny and full of spunk, making all the staff giggle every time he opens his mouth.  His appetite came back with a vengeance Saturday night and he's been full of energy.

When Andrew came to visit that night, he rigged up Gabe's chest tube box to the little wheelchair we borrowed and there was no stopping the kid.

watch your ankles, speedy gonzales coming through

He was still putting out fluid, but on Sunday the output dropped significantly.

We started to see the light at the end of the tunnel.  Gabe felt good, Josie was off having fun with the Mabrey's, and we were able to somewhat enjoy the day.  Andrew was planning to come up to visit, but I was so sure we were about to go home that I told him to stay home.

Every nurse we flew past on our multiple trips around the hospital could not believe how active he was with the chest tube.  His somewhat extreme volume level was excused with smiles, "it's not everyday we get to see kids feeling so great around here!"

hey, if he won't sit in it, I will!  I'm so tired!

I was so sure, so, so sure, we'd be getting the tube out today.

I woke up feeling good.  Our last day in the hospital.  Gabe had virtually zero output overnight.  We went down to X-ray early and waited for the doctors to come for rounds.  

We rigged up his bike and went on long rides since it was obviously his last day getting free range here.  I packed up our things, loaded up the wagon.

Rounds took extra long.

We are at the end of the cardiac unit which makes us the very last stop.  

My palms always get super sweaty when I see them standing in the hall.  They have such power over my life.  My day hinges on what they decide.  This time I was confident.  Every nurse, even his surgeon's assistant, had told us it was time for the tube to come out.

I'm sure you know where this is headed.

As soon as they walked in and pulled up his X-ray, I knew we weren't going anywhere.

Today's X-ray showed more fluid than yesterday's.  Not good.  We get a different doctor everyday at rounds so I had to sit and listen to them go over all the stats and med changes from the last 5 days.  I kept thinking they had to have something wrong.  He feels fines.  He's acting fine.  There's no sign of fluid anymore.

I held it together for most of the meeting, but eventually I just had to cry.  I was so disappointed.

Of course I don't want them to send us home until the fluid is gone.  I don't want to end up back here again and I saw the fluid on the X-ray with my own eyes.  I know leaving the tube in and staying a couple more days is what he needs.  But that doesn't make it even a tiny bit easier to accept. 

I want to take him home.  

I want him to enjoy this nice weather and go on the field trip we had planned.  I want to spend our last few weeks with all of us in Georgia together.  I'm sick of all night wake ups and watching them struggle to find veins to take blood each day.  The thought of eating one more meal from the cafeteria makes my want to puke.

Basically, I'm feeling extra sorry for myself.

I'd say for Gabe, but he doesn't seem to be phased by being here.

Which is a huge silver lining.  He's enjoying causing a ruckus in the halls and eating pizza for every meal.  The chest tube, which I'm told is one of the most uncomfortable feelings in the universe, doesn't seem to bother him other than slowing down the speed he races down the handicapped ramps.  He loves when the guitar guy comes to sing with him and, for Heaven's sake, he's getting to go to a petting zoo with Fancy Nancy officiating this afternoon.

After having a nervous breakdown (for real y'all, it was ugly) on the phone with Andrew, he made the call that we are switching places for the night.  I also know that this is a smart move, especially since we have no idea how long it will take to get this fluid off, but it's not an easy move.  There's no way I could verbalize that I need a break, so I'm thankful that he knows me well enough that I don't have to say it.  

I haven't seen Josie since Thursday.  I know she had the greatest time with Amber and Olivia at the lake, but I miss her.  A lot.  Thursday was a rough day for me and I wasn't very nice to her.  In fact, an hour before we made the call to take Gabe to the cardiologist, I'd sent her up to Amber's to play so I could regroup and fix my attitude.  Then all this happened and I hate that that was our last interaction.  I need to see her and spend some time with her tonight.

I'm hopeful that the fluid will miraculously be gone by morning.

That 36 hours from now, we will all be home.  If you're the praying type, I'd appreciate your remembering Gabe.  I'm ready for my family to be back together.

  

Pleural Effusion-ing

When you've slept as little as I have in the past 48 hours, you also will be allowed to make nouns into verbs.

We still aren't sure the exact cause, but Gabe for sure had a nasty pleural effusion.  Which means that fluid had built up in his chest cavity.  In the first 10 hours after they placed the chest tube, he dumped out over a liter and a half of fluid.

That's a ton.

self entertainment at its finest

Our first night here, I was able to get a couple hours of sleep while he did and when I came back to the ICU at 3:30 am, he looked so much better.  The puffiness was gone and in it's place was the nastiest attitude this side of the Mississippi.  Let me tell you, it was a super fun day.

The Cardiac Floor is very full and we were told that there were 4 people waiting for beds in front of us.  So basically, we'd be spending another night in CICU.  

This will sound strange, but I actually don't mind the CICU.  We get personalized care by awesome nurses, they do all X-rays and labs at his bed, and there's a strange adrenaline that flows in there making the time not pass so slowly.  I swear the second I step out I'm hit with exhaustion, but as long as I stay in there, I could go for days without sleep.

But around 4 on Friday afternoon, we got word that they had a bed for him in the step down unit, so we gathered our things and Grumpy Gabe and headed for our room.

Man.  It was a long afternoon.

Gabe was downright mean and so frustrating.

"Rub my hair.  NO!  Don't touch me, just rub my hair!" 

"MORE pizza!  NO!  Not like that, just cheese!"

I couldn't win with him.  It was exhausting and depressing and man, did I want to pack up and go home.

Fortunately, we were both able to fall asleep by 10:00 and slept (for the most part) through the night.

Since it's Saturday, everything runs a bit later.  Labs weren't until 6:30, X-ray at 9:30.  Those extra hours are precious and were obviously much needed.  Gabe woke up today still not exactly pleasant, but easier to live with.

We went on lots of walks and had an amusing situation where I attempted to push an oxygen tank, a wheelchair, a chest tube box, and a latte back to our room.  Bless the lady that took pity on us and offered to help.  I was about to have to choose between my son and my coffee and, after yesterday, I think you can guess which would have won that competition.

this edible arrangement didn't stand a chance against gabe.

The doctors came around 11 and told me that, while his X-ray was much, much better, he was still draining too much fluid to remove the tube.  Sentenced to 24 more hours.  He was able to come off the oxygen and is holding a stat of 92 on 100% room air.  Not where we want him, but headed that direction.

I'm trying to track the fluid and with all the walking he is doing he's still not putting out much.  I'm cautiously optimistic that the tube may come out tomorrow.  Man, I hope I'm right.

It feels really weird to be here.

I told Amber I'm pretty sure I have a touch of post traumatic stress disorder.  I'm anxious and liable to break out crying at any given moment.  I want to pinch myself and wake up at home.  I do not want to be here.  It's difficult for an over planner such as myself to realize how very little I actually control.  We were so prepared for surgery, even ready for a readmission in the weeks following discharge. But this? Seven weeks post op?  We didn't see this coming.

I had the realization this morning that this is what it means to parent a special needs child.

We've been so crazy blessed that, for the past three and a half years, Gabe hasn't needed a single hospitalization.  Not one.  His little heart kept beating and his body kept working hard and Gabe grew and we looked at him and never once saw a kid that was anything less than a healthy little boy.

And now we are getting a small glimpse of what could have been for him.

This in and out of the hospital.  Simple coughs turning into stay in the ICU.  Looks of pity as you roll through the lobby dragging an oxygen tank and trying not to spill your latte.

Gabe will bounce back.

He will be home soon.  And while I'm under no illusion that this will be our last unexpected hospital stay, I am confident that we can climb any mountain that gets in the way of him being happy and healthy.  We will fight for him and be more observant and be a little extra thankful for each day we aren't here.