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.

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.

Spoiler Alert: We Are Home!

We got up early this morning to head back up to Egelston for our third post op appointment.

Our Post Post Post Op, if you will.

The doctor had told us to plan to be admitted for a few days, so we had our bags with us.  Andrew and I had talked to Gabe about getting the tube put back in and prepared him as much as we could to spend the night in the hospital again.  We arranged childcare, moved appointments, cried at the unfairness of it all.

I told y'all last week that the idea of being readmitted was wearing harder on me than the actual surgery had.

I was ready to be on the other side.  I thought we were.  And when they told me that there wasn't much chance at all to avoid it, that if the medicine was going to work to get the fluid off it would have already, it sucked.  Over the weekend we did a lot of life planning and dreaming, but under it all was this gross feeling that we'd be in the hospital soon.  I subconsciously counted down the hours.

By Sunday I was OK with it.

Hated it, but knew that we would get through it.  That a few days was worth it if it made Gabe more comfortable in the long run.

We drove through a torrential down pour to get there this morning.

It was hospital admission weather.  Dark, cold, wet.

He threw up on his clothes right when we got there.  Just a hint of anxiety.

They lost the blood work order and every appointment took forever.  Gabe screamed through the X-ray, screamed louder when they drew his blood.  The lab tech hushed him, which totally annoys me.  If a kid is getting poked over and over, by golly he can scream if he wants to.

By the time all that was done, I was ready to get admitted so I could maybe take a nap.

But as soon as we walked in, the PA showed me the X-ray.

Right is from Friday, Left is today.

The fuzzy area on the left side is the fluid.

To me, both sides look pretty similar, but I went with the smile on her face and assumed it was good news.  While the fluid isn't totally gone, it went way down.  They are confident that it will continue to leave his body over the next few days and that he will be good to go without being admitted.

So we got to go home.  And it felt like a big, huge victory.  Like we are at the top of the hill, almost over it.

Gabe will stay on two of the diuretics for awhile longer, but got to drop the one that made him gag.  We will get another chest X-ray and set of labs done on Wednesday morning before we see his actual cardiologist.  We can do all of that by our house so we won't have to drive back up to Egelston.  I'm super happy about that.

If all looks good on Wednesday, he will be released back to normal 6 month cardiologist appointments. Which means we should be right on target to leave next week for our trip.

And that is seriously good news, because I have honestly never, ever, ever needed a vacation like I do right about now.

Thank you again for all your kind words and love for Gabe.  I make sure to tell him all the time how loved he is by so many people.  This kid is something else.

The Proof

It's written all over his lips.

Pre-Fontan

Post-Fontan

Post Op: Round 2

The problem with being an amateur Heart Mom is that I'm naive.

I think it's ok to plan a field trip two days after open heart surgery.  A major vacation in two weeks.  I expect nothing but smooth sails because that is what I'm used to.  Our family rarely gets sick.  Josie has had one ear infection, we easily dodge the flu.

Our colds don't hold us back, we push through a little nausea.

But this?  This isn't a low grade fever or a spot of rash.

It's his heart.

And we went in there and rearranged without asking permission.  Changed all his pressures and sewed him back up.

And that's a big deal.

I've been surprised by the emotional level that is happening post fontan.  I'm anxious about things I've never thought to be anxious about before.  Playing out of earshot, not finishing his breakfast.  It all carries a different meaning now.

only one picture today.  

after this we had labs and he proceeded to cry and scream during every other appointment.  fun stuff.

The past few days, Gabe hasn't been himself.

Not enough to really concern me, but enough for me to notice.  We hoped it was just a delayed recovery to the surgery, but prepared for it to be the fluid building back up.

They sent us home from our second post op appointment today, not because he is doing so spectacular, but because there weren't any beds.  At our first post op appointment, the X-ray showed some fluid on the right side.  Today's X-ray was much fuzzier, meaning more fluid.  There is a small possibility the blur was from him not holding still since he was not at all happy at any of his appointments today.  The doctor said compared to Monday though, it appears his chest cavity is slowly filling up with fluid.

The hope is that it will keep the adjective "slowly" over the weekend.  If not, he will have a hard time breathing.  Basically it would fell like drowning.  We have to watch him closely and head to the ER with any signs of respiratory distress.

The doctor assured me that would be unlikely.  His stats were in the high 90's and he was buzzing all around the office playing catch with the nurses.

We will keep him on the 3 diuretics he is on with a tiny shimmer of hope that the fluid levels will start to taper off by Monday.  The were very clear that this is unlikely to happen though.  We will go back early Monday morning ready to be admitted for a few days.

If we are admitted, Gabe will get a new chest tube put in to drain the fluid.  They will do it in the cath lab and he will be sedated for it.  The actual procedure shouldn't take more than an hour or two and from there we will get a room for as long as needed.  Hopefully we can be home by Wednesday or Thursday.

All this is unexpected and new to me.

I have no idea what I'm supposed to feel or how to process or exactly how to conduct myself.  I know that I am exhausted and frazzled.  I'm trying not to think about pushing another week of school for Josie into the Summer months, trying to remember I have an awesome village around to help care for her while I'm not home.  So, so, so ready to be on the other side of this.

But let's end this on a happy note.

Even with the fluid, Gabe's O2 levels were 96.  He hasn't complained about pain at all.  We are lucky that Andrew is off today and tomorrow so we can get some family time in before we get admitted again.  I'm even getting squeezed in at the salon to cover up all the grey hair this is giving me.

We will survive this and Gabe will be fine.  It's not the timeline we were hoping for, but life rarely falls into the ideal.

Here's to enjoying the weekend.

Post Op

We woke up before the sun today to head back to the hospital for post op.

There are only two things I like about getting up that early.  First off, there is zero guilt getting the biggest sized latte possible.  Second, fuzzy bed heads.

I hadn't really put much time or thought into this morning's appointment.

Before we were discharged, the PA pulled us aside and told us that a pretty decent majority of Fontan kids were readmitted at post op due to a fluid build up in the chest cavity.  They rattled off signs to watch for and sent us on our way.

Andrew and I were both a little worried about how Gabe would handle going back to the hospital so soon after our long stay.  We made sure to tell him this was just for a check up and that nothing would hurt.

He strutted in there like a boss, didn't even do his usual screaming during the chest X-ray.

bonus: Josie got to watch the X-ray photos

Gabe hasn't shown any of the signs of fluid build up.

He is eating great, as active as usual, no trouble breathing.  So I was pretty surprised when they told me the X-ray showed fluid building up.  Not good.

The surgeon came in and told us that he really wanted to avoid readmitting us if he could.  Which I appreciated since I hadn't packed a single thing and had two kids with pjs still on.

He decided to add in another diuretic and hope that it would go on it's own.  We have to go back on Friday for another X-ray.

I'm trying not to worry about it.  Hopeful that the medicine will do it's job.

But I won't lie, this one threw me off more than I expected.  I was just so sure he was doing well.  And being readmitted really doesn't fit into our schedule.  We have our reward trip for surviving this coming up in two weeks.  We need to not be admitted.

So we are going back to no water for Gabe.

It feels so strange to push Sprite and Gaterade and not let him drink water.  If it were Josie, she would love it.  Gabe is super mad at us about it.

Anyways, that's how post op went.  Prayers appreciated for Friday.

At least the sun has decided to shine for us.

Home

It hit me in the middle of church this morning.

Started as a quiet, "Thank you, God."

For your grace.  For carrying me through the last few weeks, the past few years, my whole life.  For protecting my babies.  For not shielding us from pain, but from warding off calamity.  For saving my son.

My son.  Saved.

I don't let myself think about what would have happened to Gabe without this surgery.  But even without thinking about it, I know.  He would have died.  Not today.  Probably not next week, maybe not even next year, but inevitably, he couldn't have survived without it.

I feel like I'm finally feeling the weight of it all lift.  And it's been heavy.

Gabe is doing so great.

Way better than we expected.  There are signs of him being a little sore, he's pretty attached to me and Andrew, but he is very active and very much his usual self.  If it weren't for the traces of surgical tape all over his chest and arms, you'd be hard pressed to know he even had an open heart surgery 16 days ago.

We are getting used to his sort of crazy med schedule.  The most difficult part so far is the whole "bathe him every 24 hours" part.  I'm more of a "bathe them maybe once a week" kind of mom.

Tomorrow we go back to the hospital for post op.  

He will get a chest X-ray and we will meet with the surgeon.  They told us there is always a chance the fluid build up can come back, so we are obviously hoping that isn't the case for him.  He seems to be feeling good and isn't showing any signs of respiratory distress.  Fingers crossed.

We've been home for three days now and have miraculously fallen seamlessly back into our normal life.

The laundry is done, school laid out for the week.  My kids are once again covered in Georgia red clay.
 

Josie and Gabe spent a total of four hours showing outward displays of how much they missed each other.  Squeezes, kisses, "no, you can go first"s.  Now they are back to that sibling squabble that is my normal background noise.  You'd think it would drive me batty, but it doesn't.  To me, it sounds like Gabe is feeling like Gabe and after missing him so desperately, I'm glad to have him back.

The weather is toying with getting warm.

Flowers are blooming and our grass is beyond ankle high.  Every Spring I get all ooey gooey about life.  Cliche, I know, but I love the new beginning-ness of it all.  Each year I forget how nice those first nice days are after Winter.  We aren't quite there yet, but we are almost to where our days are more outside than inside.  And I like that.

So that's about it.

We are home and things are normal.  Except that I doubt anything will ever be normal again.

I think I'm going to like the new normal.

Busted Out

It's hard to believe we were only here for 14 days.

Time works different in a hospital.  You measure hours by when meds are handed out, days by how many clean underwear are left.  By Tuesday I had no idea what day it was.  I asked at least 3 times throughout the day, certain that 24 hours had passed, wondering when that nurse would leave.  We ate at weird times, went to bed at weird times, woke up at ungodly hours for needle pricks and X-rays.

It feels like we were inside those walls for years.

As glad as I am to be headed home, CHOA wasn't the worst place to spend a couple weeks.

I learned a lot.

About Gabe, about Andrew, about myself.  I'm walking out with a few new vocabulary words.  I loved my family the day we walked in those doors, but I'm walking out with a different level of love.  Our bodies are a miracle, finding each other was a miracle, Gabe's heart, while broken, is a miracle.

I realized the importance of smiling at strangers, bending down low to make jokes with a sad little kid.  I felt the embarrassment of having your kid puke in the middle of a gift shop and quickly learned it's stupid to be embarrassed by that.

I learned that, sometimes, grown men with lame jokes and .50 cent bubbles can turn a little boy's rough day into something a little special.

Andrew and I want to take this new knowledge and pay it forward.  We have dreamed and schemed ways that we can be involved in helping other families through these difficult hospital stays.

In a weird way, I'll miss it here.

I won't miss the pokes and prodes or sleeping on cots like that made us feel like permanent campers, but I will miss the hourless days with Gabe.  Nowhere to be, nothing that has to get done.  Andrew and I realized that this is the only time that Gabe has had us to himself for more than a few hours.  It was fun to listen to him and really hear him.

I'll miss the nurses that weaseled their ways into Gabe's heart and mine.  Sure at first I thought they were too gentle, too harsh, too soft, too cold.  But days wore on and I came to appreciate the way each of them cared for my boy.

I will forever be thankful for the Cardiac Unit at Children's Healthcare of Atlanta.

They saved my son.  Really, saved his life.  How do you ever repay that?  He gets to do things that he's never been able to do before.  Run, play sports, jump on a trampoline for more then 3 minutes.

This week wasn't easy, but it changed us forever.

And that is something I wouldn't trade for anything.

Today they handed us discharge papers.

We signed on the lines, packed up an absurd amount of things, and hugged our nurses goodbye.  We walked down the halls with Gabe leading the way, exactly how we walked in 14 days ago.

Only this time, our son didn't get winded.  He didn't turn blue or reach up to be carried halfway down the hall.  His heart is working.

It's working!

And with that, we are busting out of here and headed home.

With my super hero son and his amazing half a heart.

We accumulated a lot of stuff in 2 weeks!

Cathy was Gabe's favorite nurse.  Which made her my favorite too.  She played football with him and tickled him and talked us through countless near breakdowns.  I will forever be thankful for her.

Josie blew past me to squeeze Gabe.  And I realized how awesome siblings are.

My people.  Together!!!