Fruit!

The good news of the day is that Santi can now eat fruit in addition to drinking clear liquids. He has enjoyed watermelon, grapes, an apple and half a banana so far today. Although he's still begging for "cookies," which in his world are actually graham crackers. 

Other good news is that his X-ray looked really good today. Still nice and clear. 

The not so good news is that they are being extra cautious with him. No sudden movements. Which means we are looking at another week or so in the hospital. They want to start food and wean IV diuretics very, very slowly. This is so we don't end up back here again. 

With the holidays rapidly approaching, I can't help but feel sad not to be able to participate in all of the festivities. I don't know if I'll get to send out Christmas cards or if Santi will get a photo with Santa. Maybe we'll do a Happy New Year card this year instead. 

THREE WEEKS

21 days in the hospital

2 surgeries

3 chest tubes

25+ X-Rays

25+ blood draws

5 IVs 

A dozen wonderful nurses (and 2 not so great)

And one family who is very happy to tell you WE ARE GOING HOME!!

It has been a wild three weeks. Emotional, frustrating and intense. But also filled with love and joy for every baby step of progress. 

Time to decompress, enjoy the sunshine and spend Thanksgiving with our family. 

Santi was so excited when I told him we were going home!

Let's get outta here!!!

Recovery- Day 19

Believe it or not, staying in the hospital with your child actually has some perks. The one on one time is unparalleled. There is no pressure (and no possibility) to leave, to be anywhere, to make play dates. Just me and him. 

Abe has been with us all day, everyday. Our families have stayed for countless hours and made sure we had plenty of delicious, non-cafeteria food to eat. But the one on one time I've shared with Santi over the past 19 days is priceless. They haven't been the best or most enjoyable days of our lives, but they are days I will cherish. Days when I could be there for him, around the clock, without distractions. I cherish them because they are rare and limited days when all he needed was me. 

Another perk of our extended stay? Watching him sleep. At home, as soon as he's napping or in bed for the night, I'm off to take care of other things around the house. I check the baby monitor, but I don't take the time to just watch him sleep. Here in the hospital when he falls asleep, I get to enjoy the precious serenity of his sweet face and tiny body. I love to watch him drift off to dreamland so comfy and cozy. Getting the space, time and solitude to see a toddler at rest is really special. I wish the circumstances were different, but I'm grateful that I can recognize every bit of joy in a dark situation. 

This guy. He is everything.  

Recovery- Day 18

Just doin' our thang...

we shared a smoothie 

We visited the playroom 

Another day, another doggie

Recovery- Day 17

The chest tube is out!!!

This dude was seriously thrilled to get rid of that tube!

It was removed around 12:30pm today. I can't tell you how happy this makes all of us! No more chest tube also means means no more oxygen! Yay! The most exciting part about removing the oxygen is seeing his 95-100% sats!

So what's next? 

We will stay in the hospital and continue to have daily X-Rays and blood work. The cardiology team will follow him very closely, tweak his medications as needed and they'll send us home when they see stable and consistent numbers.

Anyone who has ever had an extended hospital stay knows it's bad juju to speculate on a discharge date. I'm not even going to throw any dates out there. We are happy to stay here as long as Santi needs to and we will go home when Santi is ready. 

We did a lot more walking today. It felt great to get out of the room without wheeling around the chest tube pump and oxygen tank! Freedom!

Recovery- Day 16

It has been a mellow day at CHLA. 

Santi's chest tube drainage dropped to 35cc over the past 24 hours. Yay!!

They lifted the fluid restriction today to make sure he can eat and drink as much as he wants without producing more drainage. From my laymans perspective, his output did not increase. We'll get official numbers in the morning.    

We took another long walk through our unit and even stopped by the playroom.  

Recovery- Day 15, update

Today was pretty great, as far as hospital stays are concerned. 

Santi got to eat something besides fruit and clear liquids. 

We took two long walks. Despite the sullen look, he actually enjoyed getting out of his room. 

We made another new puppy friend!

Santi had a music therapy session. So cool!!

...plus he did all of that wearing Woody jammies. Santi continues to amaze us, everyday.  

Recovery- Day 14

Two weeks. In the big picture of our lives, it's nothing. 

Santi is a professional patient. He has gotten used to the daily activities of hospital life. He holds still for the blood pressure cuff, he lifts his arm for the thermometer and lowers it back down. A half dozen people, or more, come at him with stethoscopes throughout the day. His only request is that I hold his hand while the strangers hover over him. X-Rays and blood draws are still met with terror, understandably. He can power through his oral meds (6-8 syringes twice a day) like a champ. Even the most veteran nurses are impressed with his ability to take sodium chloride (liquid salt) twice a day with minimal hysteria and zero gagging. When his nasal cannula falls out (because we don't need to tape it to his cheeks) he fixes it himself or asks for help. 

We are equally happy and sad over his professional patient status. Happy he can adjust to new and difficult situations. And so, so sad that he has to learn this skill as a toddler.  

Santi had a big day today. The first bit of good news is that his drainage is slowing down enough that we've heard mention of tube removal. His drainage has decreased from 200cc to 150cc to 120cc to 80cc over the past four days, respectively. If he's down to 40cc tomorrow he'll most likely return to a low fat diet. If his fluid output remains low after a day on a low fat diet then the tube can come out. Let's all root for that! 

Santi also walked more today than he has in the past two weeks. We walked from our room to the furthest nurses station and back! He did amazing. I wish we had a photo, but our hands were full. Abe rolled the pole with the oxygen tank and chest tube pump. He also wrangled the tubes and wires. I hovered my hands on either side of Santi's ribs. Just in case he lost his balance. He didn't. He was so strong. 

We celebrated by spending the rest of the afternoon on my bed by the window. Santi opened a few more presents and watched a movie on the iPad.  

Recovery- Day 12

More smiles from our main man today!

We played with playdoh, blew bubbles and had another special visitor, Coco, the beagle spaniel mix. Whoever came up with this therapy dog program is a genius. I am forever indebted to them. 

As we approach two full weeks in the hospital, I can't help but think about something Dr. Starnes said at our pre-Fontan consultation. He said that if the drainage tube is in for more than two weeks, they might have to do more to stop the drainage. This morning during rounds I asked that terrifying question, only to get an even scarier answer. ​

I said "we're almost to the two week mark, what happens next if his drainage continues?​" "There is a possibility for additional surgical intervention," they answered. 

That is not what I wanted to hear. ​I can't believe that being on three diuretics and a tight fluid restriction hasn't dried him out like a raisin. 

Oh, and he had his first box of apple juice, ever. 

Recovery- Day 11

Smiles!

Santi treated us to several smiles today! There is nothing better than seeing his face light up.  He had two special visitors, his heart buddy Zoe and a new puppy friend named Archie. He also received a new "twain" from great aunt Carolyn. 

Recovery- Day 10

I can't believe it's been 10 days since his surgery. Even with the additional procedure and all of the ups and downs, I think everything is going fairly smoothly. 

We spent today resting and helping Santi relieve his constipation. Sedation from surgery and morphine for pain really slowed down his gut. His belly has been uncomfortably distended. A few days on miralax and two suppositories later...let's just say he's much more comfortable now. The top photos are pre bowel movement. The bottom photos are after a few diapers. He was ready for watermelon, his fruit of choice since he's been on the clear liquid and fruit diet. 

The daily X-rays show his lungs still have pockets of fluid around them. They switched his diuretics from oral to IV. The IV diuretics work more aggressively. 

More of the same tomorrow. Resting and encouraging him to move around more.  

Recovery- Day 8

Dr. Wells came out at 12:30. Everything went as expected. Only one scary, little surprise. 

Having his diaphragm fully expanded for so long caused his right lung to partially collapse. After plication, his lung returned to normal. 

We were able to go to Santi's new CTICU room around 1pm. I've been laying with him ever since.  

He has a 3 inch incision across his ribs. They removed his chest tube, but placed a new one lower on his belly. So many battle wounds for our little warrior. 

Surgery is underway

It was a long night, followed by a rough morning. In preparation for surgery, Santi was NPO since midnight, meaning he couldn't have anything by mouth. Naturally, he was not thrilled about being denied water and fruit for breakfast. We did our best to keep him distracted this morning while waiting to hear what time he'd go to the OR. He loves watching daddy draw on the whiteboard!

Luckily, they came for him around 10am. So his suffering was not prolonged. 

This morning has been the hardest of all the entire Fontan stay. We were blindsided by this procedure and had little time to prepare. Santi was thirsty, tired and uncomfortable. He kept screaming "mommy, mommy," pleading for me to help him. To protect him. To make everyone go away. He calms down when I snuggle my cheek up to his and shield his body with mine. "Hug,  HUG!" He says through tears.  It brakes me to pieces. 

We are his parents. We should be able to protect him and keeping from suffering. How do we do that when we are faced with the necessary? 

They took him at 10:30. Each time it gets harder and today was no exception. We hope to hear something soon.  

We appreciate the endless love and prayers​. We feel it. Santi does too. 

It's 4:30am

I'm wide awake and anxious. 

This has been the most restless night all week. I'm not sure if it's because we have surgery later today, or if it's because we've had an awful night nurse and assistant. Probably a little of both. Why are they awful? They have been very disruptive and inconsiderate. The type of night team that is simply checking off to-dos without being mindful of the importance of sleep for a toddler. The only thing I can do at this point is let our charge nurse know that I do not want them assigned to us again. And I will. And if you ever have a hospital stay with your child or loved one, know that you can always speak up. You have a say in who cares for you. 

After being awake and mad for a few hours the reality of another surgery set in. The Fontan didn't scare me. We knew it was coming and we were prepared. We kept Santi healthy and quarantined for a few weeks leading up to it.  Going into it, I knew he had all the strength he'd need for a successful surgery. 

Todays surgery is unexpected. Santi has been in-patient for a week. He's recovering from major OHS. He has been in physical contact with more people here than he was at home, Healthcare providers who are in contact with many other people who could potentially be sick. His incisions are healing and he's been poked for blood draws numerous times, potentially exposing him to infection. He has had poor nutrition with his clear liquid fruit only diet for the past few days. His body is tired. What if it's too tired?

Please help us get through today safely and back on the road to recovery. 

In other news...Santi received a wonderful surprise yesterday! His heart buddy Maverick, in NY, sent over a thoughtful gift and a big balloon. Oh that smile! He was so excited. Thank you Mav, Nikki and Charlie!! You made his day!

Recovery- Day 7

We are one week post op, but it feels like we've been here for months. We spent the first four nights in CTICU (cardio thoracic ICU), the next two in a shared room (not fun) in CV Acute and last night we were moved to private room, yay! 

We had another restful night of sleep. They really respect our wishes of not disturbing him while he sleeps. We no longer have to wake up at 3am for meds. Hooray!

Santi started today off with a trip to "Mommys bed" by the window. He enjoyed the change of scenery and sunshine. 

My gorgeous boy

sweet cards and posters from our stroller strides friends decorate his room

Daddy recreated his favorite scene from Cars for him

But the fun stopped there. 

The surgery team came in late this morning to inform us that Dr. Starnes agrees with the cardiologists that plication of his diaphragm is necessary. He is scheduled for surgery tomorrow, mid-day.

They will access his diaphragm by making a new incision on his right side and separating his ribs. Then they will suture his diaphragm down so it no longer expands. I can't tell you how sad and angry Abe and I are over this.

Paresis of the diaphragm during open heart surgery is fairly common, but it's also avoidable if they are cautious of the phrenic nerve. At some point during his Fontan, his phrenic nerve was disturbed or damaged causing his diaphragm to expand in a state of shock or paresis. It might/maybe/possibly heal itself over time, but that isn't guaranteed. And until it does, it's crowding his lung. As you can imagine, that's a very dangerous scenario for a single ventricle kiddo. 

Our little guy has been through so much. The suffering feels endless. We know this is necessary. We know this is temporary. We know we will get to take him home soon. We know we will see him running and playing again. But man, enough is enough. Blessed are the families that never have to see their child experience this type of pain. 

Please continue to send love, prayers, positive energy and healing thoughts to Santiago.  

Recovery- Day 6

We have not heard from the surgeons yet regarding the plication (tacking down) of his diaphragm. During rounds this morning the team said today will be more of the same, no new changes. 

On the brighter side, his oxygen saturation is phenomenal. Pre-op and pretty much since birth, Santi's little heart only managed to provide his body with 75%-80% oxygenated blood. See that 100 on the monitor?

Oh how it fills me with greater joy than I've ever known! 100 PERCENT! Just like me, you and everyone else who has normal heart function. Yes, he is on half a liter of oxygen, but that's practically nothing. He will probably average 95% when we're home. I'll take it. ​Gladly!

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. 

First Post Op SMILE!!

Santi had a full day of visitors, people he loves and adores. But no matter who walked in the room Santi maintained his blank stare, pouty face. Until about 8pm when I left the room to eat dinner.  

Since we're still in ICU, food is not allowed in patient rooms. Abe brings me dinner every night and spends some one on one time with Santi while I go to the lounge to eat.  

With only the silliness a father and son can share, Abe cracked through Santi's depression and managed to get a smile on his lips! Not only a smile, but giggles too!! GIGGLES! Best news ever. 

When I returned, Abe told me about the elusive smile and I couldn't believe it. Like any great dad, he had pictures to prove it. My heart just melted all over everything. 

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.