Celebrating

Santi is celebrating with a lollipop because he just got cleared to go back to a full fat diet. He has been on a low fat diet since his surgery in November. Last week he went in for an X-ray, everything looked great, so we had a three day "fat" trial. Meaning he could eat whatever he wanted. The doctor encouraged us to feed him ice cream and French fries!  

Today we went back for a follow up X-ray and once again he had a clear chest. No fluid retention! It feels great to be over this hurdle. 

Now we just have three more months on Coumadin and some diuretics to wean. 

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Six Weeks Post- Fontan

Santi had a check up with his San Diego cardiologist today. His X-ray showed a tiny bit of fluid on his right side. The Doctor didn't seem too alarmed and didn't make any changes to his medication. 

Overall, everything looked good and Santi did great at his appointment. It was a long day with lots of waiting around. Santi played quietly, ate lots of snacks and waited so patiently every step of the way. He constantly amazes me. 

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RAD!

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His shirt says it all! Santi had a rad follow up appointment. 

Santi's X-ray was clear, no pleural effusion! His blood work came back good too. The CHLA team is handing us back over to our San Diego cardiologist for regular check ups. Hooray!!

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The weather and traffic getting to LA and back was awful! We left the house at 10:30am and didn't get home until 8:30pm. But getting the good news  was worth the effort! Now we get to enjoy a relaxing weekend at home. 

The Best Day Ever

We were discharged early this afternoon! Knowing how easily it is to be re-admitted, it's hard to celebrate too much, but we are thrilled to be taking Santi home today. 

Ready to roll! Check out daddy's Dusty CropHopper

Ready to roll! Check out daddy's Dusty CropHopper

Santi had another good nights sleep and a crystal clear X-ray this morning. I couldn't ask for anything more. 

He is going home on higher doses of diuretics, something we believe may have been overlooked with his first discharge. Santi is not on a fluid restriction, but we will closely track his intake to ensure we are doing our part to keep him healthy.  

Our first stop after the hospital was Lassens market in Los Feliz. They have the best sandwiches! 

Our second stop was Studio Number One, the office of Obey Giant, to visit Abes' friend and fellow artist, Ernesto Yerena. Their office and design space is just as cool as you'd imagine. Santi managed to get his second celebrity photo of the week with Mr. Obey himself, Shepard Fairey

Shepard, Santi & Abe

Shepard, Santi & Abe

the gallery at the studio

the gallery at the studio

I love my guys!

I love my guys!

It has been a roller coaster of a week. We are happy to be on our way home! 

Sleepy guy

Sleepy guy

 

An Awesome Day

What can I say, we had an awesome day. 

For starters, we had our favorite nurse last night. She is so considerate of Santi. He managed to sleep peacefully  from 9pm to 6:45am, when blood draw came in. She does her job, IV meds, vitals, etc, she just has the magic touch to not disturb him and I am so grateful for that. 

I've been working with Santi on staying calm for X-Rays, and today it paid off. It's the first time, ever, he didn't scream through his X-ray. I felt so accomplished. On top of that, his X-ray was perfect and clear. 

Practicing for his X-ray 

Practicing for his X-ray 

Since Santi had zero drainage overnight and a clear X-ray ​they pulled his tube this morning. Yay! Within 20 minutes of losing that tube he was more of himself than I've seen in a month. He was SO HAPPY. He just wanted to walk the halls and play all day. 

Playroom!

Playroom!

Then, we were treated to another surprise. Actress Malin Akerman (The Heartbreak Kid, 27 Dresses) was visiting our unit, bringing toys to each child. She was so sweet and beautiful and surprisingly tall.  (I'm 5'9 and she makes me look petite in this photo).  She gave Santi a HUGE box of crayons and a cool coloring book. Santi and I were both thrilled. By the way, I'm glad I actually showered and got dressed today!

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The tube is out and we're off oxygen​, so if our X-ray looks good tomorrow then we are one foot out the door. 

Steady Improvement

We are having a great day. 

Santi had another clear X-ray this morning, no sign of fluid. His chest tube had ZERO output in 24 hours. And he was given the green light to resume a low fat diet. Yay for milk & cookies! He's still on a fluid restriction of 31oz a day, so we have to pace ourselves, which is as hard as you can imagine. Try telling a toddler who hasn't eaten in 5 days that he can only have 2 ounces of milk at a time, LOL. He was thrilled to eat low fat/no fat food and have sips of milk throughout the day.  

Happily snacking

Happily snacking

We also had a special visitor, Panda the puppy​! Oh man, dogs make Santi SO HAPPY. This therapy dog program has made such a great impact on us. 

Panda the puppy!

Panda the puppy!

kisses

kisses

If his output stays minimal while on the low fat diet, then his chest tube will be removed tomorrow or Wednesday. That will be followed by another few days of X-rays to ensure the pleural effusion doesn't return. 

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. 

A Better Day

Santi's X-ray looked "fantastic" today, said the team! I saw it as soon as the technician took it and even my untrained eyes could see a huge difference. It was super clear. Getting the tube was hard, but I know it was the right thing to do. 

They are going to stay aggressive with the IV diuretics for another couple of days. Unfortunately his IV isn't looking great, so they'll have to put in a new one today. He's still on a clear liquid diet. They agreed to let him have a lollipop this morning and we are going to try Jello later today. There has been no word on when he can eat real food. My poor guy is so hungry. We went to the playroom and he ate pretend food.  

Preparing his pretend lunch :(

Preparing his pretend lunch :(

In the playroom

In the playroom

Another Chest Tube

After three doses of IV diuretics overnight and being on a restricted amount of clear liquids, Santi's X-ray showed no improvement this morning. 

The X-ray on the right is from the day of his discharge last week​ and the left is from this morning. You can see all the pleural effusion (fluid around his lung) built up in the right side of his chest. 

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We went to interventional radiology around 11am. They took him back for his new chest tube around 11:30. This is a different tube than he had before. It's called a "pig tail." It's smaller in diameter and has a perforated end that curls around, thus the name, pig tail. I was back by his side by 12:30pm. He was still sedated and sleeping. ​

The doctor said that he drained 250cc when the tube went in, that's a lot of fluid! All of the fluid was putting pressure on his lung causing it to collapse. This is why his sats were dropping so low. 

I don't really know what to expect now. We will watch the drainage and tweak his medications​. Same old, same old. 

Re-Admitted

Ugh. Uuuuuggggghhhhhh. 

Despite our efforts this week, restricting his liquids and increasing his diuretics, Santi's X-ray looked worse today than it did on Monday. They admitted us as soon as the team saw his X-ray. We are all pretty devastated. 

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The plan is to have three doses of IV diuretics overnight, 5pm, 11pm and 5am. He just had his first dose. His X-ray will be a little later than the usual 6am. But they have prepared us for the possibility of another chest tube. And by prepare, I mean they said, "he'll most likely get a chest tube tomorrow." 

Of course Abe and I immediately asked, "Why not give the diuretics a chance to work????" The team is very concerned with his low sats, now 89-91. And a chest tube is the quickest way to get the fluid out. Best case scenario is that these three doses make a good enough improvement overnight that they don't need to put in a chest tube. 

As soon as we checked in to our new room, which is actually our old room, the one we were discharged out of, one of the aids came to say hello. The same aid that walked us out a week ago. I burst into tears telling her why we were back. Santi looked at me so confused and shocked, "oh no mommy!" He said. He's never seen me cry. My sweetheart wiped my tears and gave me a hug. Can you imagine your toddler consoling you? It only made me more sad. 

Let's hope the IV diuretics work. We avoid a chest tube and we can go home with a healthy boy soon.  

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Post Op Check Up

Santi had his post-Fontan check up on Monday. Our day included an X-ray, blood draw, echocardiogram, standard vitals, like blood pressure, temperature and pulse ox. He was seen by both the surgery team and his cardiologist. 

The legend himself, Dr. Starnes. The man who has held Santi's heart in his hands. 

The legend himself, Dr. Starnes. The man who has held Santi's heart in his hands. 

I wish I could say it was a great appointment. But it was just okay. His sats were 92-96, lower than we expected. They were 97-100 at discharge. His blood pressure was good. Echo looked good. His X-ray was the most worrisome. It showed more fluid building in his chest. Ugh. 

They increased his diuretics. And Abe and I decided to put him on a voluntary fluid restriction. The doctors want to see us back on Thursday to see if this dries him out. If this approach doesn't work and his X-ray on Thursday shows no improvement, we might be re-admitted for IV diuretics. I really hope this doesn't happen. 

We drove back to San Diego on Tuesday. It has been so nice to be home, in our own beds. It would be an awful tease to have to go back to hospital life. ​

Adventures

Friday and Saturday morning, we started the day with a family hike up to Griffith Observatory. Los Angeles was showing off with gorgeous 80 degree days. 

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Tonight we went to The Grove for dinner and to see the holiday decor. It was much cooler and raining. As you can imagine, Santi hasn't seen much rain. He was so excited to stomp in some puddles with his cousin Ricky. 

Santi leading the way

Santi leading the way

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Naturally, we checked out some local murals. Can you spot Santi?

mural by Cyrcle

mural by Cyrcle

Happy!

On our drive home from the hospital on Thursday, Santi called to me from the backseat.

"Mommy!!" He's shouted.

"Yes, my love" I said.

"HAPPY!" He replied through a big smile. 

"I'm happy too," I told him. So incredibly happy to be home.  

But Friday morning we woke to a scare. I was on the phone with CV Acute at 6:30am. Santi woke up with swollen, puffy eyes. We were so worried. 

After talking with the Nurse Practitioner we narrowed down the cause of the puffiness to 1) drinking more liquid than his body was used too  2) sleeping flat for the first time in 3 weeks. 

We've been less generous with milk and water. And we propped up the mat in his pack n play so his head can be elevated when he sleeps.  

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!!

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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!

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

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Let's get outta here!!!

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.  

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Recovery- Day 17

The chest tube is out!!!

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

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!

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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. 

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Santi got to eat something besides fruit and clear liquids. 

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

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We made another new puppy friend!

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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. 

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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.  

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