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!!
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.
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
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
the gallery at the studio
I love my guys!
It has been a roller coaster of a week. We are happy to be on our way home!
Sleepy guy
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
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!
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!
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.
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
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!
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.
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.
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 :(
In the playroom
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.
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.
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.
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.
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!!!
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.
Just doin' our thang...
we shared a smoothie
We visited the playroom
Another day, another doggie
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!
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.
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.
Hospitals are nonstop. And when you're a patient (or a parent of a patient) you live by their 24 hour clock. Here's a snapshot of what our days living in the hospital look like.
6AM- Blood draw, I mean who doesn't like being woken up with a poke in the arm.
6:30AM- X-ray, they wheel a portable machine right into our room.
7AM- Shift change for nurses
8AM- Medicine & vitals (blood pressure, temperature, feel pulses and listen with stethoscope)
8:30AM-12PM- Play, watch movies, wait for rounds. Doctors and NP's round every morning between 8:30 & 9:30 You learn so much by listening in on rounds and sometimes they even listen to you!
12PM- Vitals
1-3PM- Nap! It's amazing how he's fallen back into his sleep patterns despite this hectic atmosphere. We worked really hard on having a consistent sleep schedule when he was a baby. There has been slight adjustments to it over the past two years, but ultimately it has paid off. Seeing him find his schedule here, after all he's been through, is simply delightful.
4PM- More vitals
4-8PM- More playtime, movies, books
7PM- Shift change for nurses
8PM- Medicine & vitals, Santi is currently taking three diuretics, enalapril for blood pressure, Zantac for his tummy, sodium chloride (which tastes 100 times saltier than ocean water) because the diuretics have depleted his system of sodium, Coumadin to prevent clotting, miralax as needed, Motrin for pain during the day and loratab (Tylenol with codeine) before bed to help him sleep comfortably.
9-10PM- Sponge bath in bed, another movie, lots of cuddles, Sleep!
12AM- Vitals
2AM- IV diuretics every 6 hours (for now)
4AM- Vitals
...and then it all starts over again with a 6AM blood draw.
I am always awake to enjoy the sunrise over downtown LA
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.
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.
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.
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.
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.