Cardiology Check Up

It's hard to believe it has been 1 year since Santi had the Fontan, his third open heart surgery. Santi has recovered beautifully from his surgery and his heart function is excellent. Words every heart family longs to hear. We are down to annual cardiology visits, which is also phenomenal for a young HLHSer. Santi's highlight to our (4 hour!) appointment, was getting this cool Hot Wheels car carrier. It certainly helped us get through the last hour of waiting around. We were sent home in a Holter Monitor (24 hour EKG) which is pretty standard. Santi will wear it for a day, then I mail it back to the doctor and they read his heart rhythms. My little trooper did great today and we are  happy to hear his heart is doing well!

November 2014

One year ago, Santiago recovering from the Fontan

Recovery- Day 4

Santi had an uneventful night last night. He and I both slept well, with few interruptions. X-ray arrived at 5am, Eeek! An hour and a half earlier than usual. Because Santi is in the last room in ICU, he's usually the last for things like X-Rays and rounds. His night nurse noticed air bubbles in his chest tube, so she requested his X-ray be first. There are some air pockets in his chest cavity, but they assured us it's nothing to worry about. 

How cool is his custom gown!

We spent more time standing, taking small steps and sitting up in a chair. Santi even got to go for a ride in the wagon to the playroom!​ It was a quick trip, but it was also Santi's first time out of his room post op. 

The most traumatic part of the day was the removal of his IJ, internal jugular central line. Abe and I both helped hold him down as they pulled the tape away and took out the line. It was awful. Santi was hysterical. Screaming, ​kicking, trying to twist and wiggle away. All while the nurses were using sharp scissors near his jugular to snip sutures. As if the tape pulling and suture snipping weren't enough, then we had to hold him down, 4 adults on 1 post op toddler, for 10 minutes while a nurse applied pressure to the incision. I don't ever want to do that again. 

Naptime 

We also saw a lot more smiles today, a lot more of our sweet Santi.  

And to top off a full day, we were transferred to CV Acute!! CV Acute is a step down from ICU. It's also the place you go, before you go home! Not that we're close to going home, but closer than we were yesterday. 

Post Op - Day 2, update

Baby stepping our way to CV Acute. 

Santi made great progress today. He stood up, with assistance and lot of screaming, for about a minute. He also sat up in a chair twice. 15 minutes the first time, 30 minutes the second.

Aside from the three diuretics he's on, getting him moving is the only way to help clear all of the fluid away from his lungs.  

First time standing post op

Naptime 

He is still very depressed. Which is just about the hardest thing in the world to see. Nothing makes him smile. Not new toys. Not special visitors. Not his favorite movies. Nothing. It's awful. 

I know this is only temporary. I know we will be home soon and soon this will be a distant memory. But for my sweet toddler, every hour is a miserable eternity. 

Please continue to send love and prayers for Santi's happiness and wellbeing. We want to see his smile!

Movie and cuddles with Mom and aunt Renee 

Story time with daddy

Post Op - Day 2

Santi is exactly where he should be in the recovery process.

Yesterday they removed his urine catheter and V wires. We didn't even know he had V wires pacing his heart. But it's standard Fontan protocol. They also removed the arterial line from his groin and the IV from his foot. And he's down to 1 liter of oxygen. 

​He returned from surgery with a lot of accessories. It's nice to see them go away, one by one, until eventually I will just be looking at my sweetheart and his fresh incision. ​

The fluid output from his chest tubes are average. His pain management is on track. Everything is as it should be, except my baby is sad. 

He's sad he can't have as much water and milk as he'd like. His fluid intake is restricted to 1oz per hour. For a kid who's used to 30+oz of water and 30+oz of milk (goats milk) a day, it's a very difficult adjustment. He's sad he can't sleep on his belly. He's sad we can't go home. His nasal cannula and IV  are upsetting and annoying. He's so sad.  It's a very confusing situation for a toddler. Throw some pain meds on top of that and ​you get an unhappy, disoriented, thirsty little dude. 

The gifts are helping by offering a brief distraction.  I'm hoping to see Santi's big, bright smile ​again soon. 

What does it look like?

What does it look like to have your child return from open heart surgery? 

When we saw Santiago for the first time yesterday, post-op, this is what we saw:

his chest was closed

Extubated (breathing tube out)

he was on 5 liters of oxygen 

Central line in his neck

IV in one hand and one foot

Arterial line in his groin measuring blood pressure 

Urine catheter 

Medial chest tube and right side chest tube draining fluid

Pulse oximeter on his finger reading the oxygen saturation in his blood

leads and wires measuring his heart rate, respiratory rate, etc

POST-FONTAN

Post-Fontan! I can't even write that without tears. 

Make no mistake. They are tears of joy! I hear all the heart mamas clapping, shouting, celebrating and cheering for us as I say,

WE ARE POST-FONTAN!!!

Freakin' post-fontan you guys!! Since the day he was born we have wondered if he would make it to the Fontan. Some kids don't. If we would ever jump this hurdle that has been on our calendar and in the back of our minds for years. 

When I was pregnant and received Santi's HLHS diagnosis, they tell you about the "3 surgery process" for transforming your child's heart into a functioning single ventricle. Just to be clear, he will never have a left ventricle. 

First, there's the Norwood, which they have as a newborn. Santi was 4 days old for his.  

Pre-Norwood. No scar!

Post-Norwood. 2 weeks old

Then, there's the Glenn, which happens around 6 months old. Being an overachiever, Santi had his at 3.5 months. Prefaced by a 22 day hospital stay for a blood infection and 3.5 months on continuous oxygen. That was fun. 

Post- Glenn. 4 months old

Finally, they tell you about the Fontan. The third and "final" procedure for HLHSers. The Fontan usually happens at age 3 or 33lbs. My dude is on the fast track once again. He's 2.5 years old and 31.2lbs.  (I say "final" because it's only final for the lucky ones. So many HLHS kids have to endure many more.) 

After the Fontan? So what's next? LIVE LIFE! Not that we haven't been living a fabulous life with Santi. We have. But it's a whole new world not having something like open heart surgery looming over you. 

We are facing a few rough weeks of recovery, but we can handle that.  

The Fontan- update 2

We are with Santi and he looks great!

I'm hesitant to say surgery went well because we have not spoken directly to Dr. Starnes yet. But no news is good news. I'm looking at my sweet guy right now and despite the incision, IVs, drainage tubes and wires he looks fantastic.  

He arrived in CTICU around 1:15pm.  It took about an hour for them to get him settled. Abe and I were able to come in at 2:15pm. The morphine and Ativan are keeping him comfortable. I Reiki'd the room and did a session on Santi. And the nurses are just phenomenal. 

Santi's first words post fontan were "go go!" As in, get me outta here. I'm ready to go home! His second was "Nemo," referring to his Nemo water bottle. The poor guy is so thirsty. But he cannot have any liquids for a few more hours.  

I'll post again after the surgery team gives us the full run down.  

The Fontan

We checked in to CHLA at 6:40am. 

Santi needed additional blood work and another EKG.  

Its 9:25. He's on Versed, aka "happy juice" to keep him mellow while we wait. And wait. And wait. We're waiting for the surgeons to take him to the OR. 

We are receiving all of you messages, texts, love and prayers! Keep it coming. As difficult as this part is, recovery is the real obstacle. We feel the love and we truly need it today and for the next few weeks. Thank you!!!

Admitting

Showing coco, papa and daddy all the cool toys. 

Pre-op

Today was Santi's pre-op appointment. Blood work, X-ray, EKG and all vitals. Let's be honest. It's not fun. We do our best, bribe him with toys and a lollipop. But Santi is too smart. He knows what's coming. He begs to "go go." It is so hard seeing your baby upset and uncomfortable. And there's nothing you can do except push through and stay positive because it's all necessary. 

Cardiology Check Up

It feels like it has been just about forever since I've posted anything heart related. I guess that's a big sign that Santi is a two year old first and an HLHSer second. His heart condition doesn't prevent him from being a normal (wild, unruly, loud, demanding, hilarious) two year old.

We had his six month check up with Dr. Frazer at Rady Children's in SD. The good news is that he is doing great, there is really nothing to report! Except this...
He's ready for his third open heart surgery, The Fontan.
Just to recap, Santi had his first surgery, the Norwood at 4 days old. His second, the Glenn, when he was 3.5 months. It's been a LONG time since we were in-patient at CHLA. He has a good track record of speedy recoveries and few complications. Let's hope (and pray and hope and pray some more) that this surgery goes just as smoothly.

Here's what the CHLA website says: Fontan procedure. This operation allows all the oxygen-poor (blue) blood returning to the heart to flow into the pulmonary artery and lungs, greatly improving the oxygenation of the blood. The Glenn shunt, connecting the superior vena cava to the right pulmonary artery, is left in place. A second connection is made directing blood from the inferior vena cava to the right pulmonary artery as well. This connection can be created in slightly different variations, depending on the method your child's surgeon prefers, and what is best for your child.

We will take Santiago to CHLA the first week of September for his pre-op cardiac catheterization. At that time we'll get a date for the Fontan. Most likely mid October.