We had a good night in CTICU. Santi stayed pretty medicated on morphine throughout the night. They say the thoracotomy, or incision through the ribs, like he had yesterday, is one of the most painful to recover from. We're doing our best to keep him comfortable. I even slept in his bed part of the night. Mom cuddles seem to be the most effective form of comforting.
We moved back to CV Acute earlier today. Santi has spent the day resting.
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.
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!
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.
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!
The highlight of the day was when a special visitor named Puppy Brewster stopped by to cheer Santi up. Santi loves dogs! It was a great treat to have one stop by our room.
The bummer of the day was taking Santi for his special X-ray.
They confirmed that the right side of his diaphragm is not moving. It is a mild paralysis, meaning it is possible to heal on its own, very slowly. However, the surgeons are currently discussing the option of taking him back for another procedure in which they would tack the diaphragm down permanently. Ugh. Another procedure means another intubation. Another sedation. More trauma for my sweetheart (and us). But it could also help stop the fluid buildup in his lungs and get us home.
Waiting to see if it improves on its own could mean a longer hospital stay. Keeping the chest tube in longer and even then, they might still have to do the procedure anyway. Ugh.
We will find out more tomorrow.
We had another restful night! Which is very rare in the hospital. We slept from 10:30pm-3:50am, then it was time for meds and vitals. Santi was back in dreamland by 4:30am. Only to be awakened for an X-ray at 6am. He dozed off again until 7:15am when they came in for a blood draw. The peripheral IV in his hand was removed overnight. I'm not sure if they'll put in another, or just stick with blood draws.
The not-so-good news is that Santi is still having a lot of fluid draining from his chest tube. It should have slowed down by now. They believe this is due to excess fat in his diet. Per Fontan protocol, he's been on a low fat diet (no more than 25g per day) since surgery. Thursday to Sunday all he had was his fluid restricted servings of water, goats milk and Orgain (an organic supplemental shake). He regained a bit of his appetite on Sunday and ate plain noodles, peas and carrots. So I don't know where excess fat would be coming from. Anyways...as of this morning he's on a "clear liquid and fruit only diet" to see if it helps reduce the fluid output. Ugh. Do-able, but no fun.
In the months leading up to the Fontan, our goal was to get Santi to gain weight. He snacked on things like cashews and dried coconut. We discovered Orgain, a high calorie, organic, supplemental shake that he absolutely loves. So now we have to shift to the complete opposite direction, denying him some of his favorite foods. When he comes home he will have to follow a strict, low fat diet for a few months, which shouldn't be too challenging. As a vegetarian, his diet is inherently low fat. But for the next few days it's strictly clear liquids and fruit.
He will also be taken in for a special X-ray sometime today. They believe his diaphragm might be paralyzed. Which is not uncommon following heart surgery. Looking at the X-ray below, you can see that his diaphragm comes up substantially higher on the left side of the photo (right side of his body). You can also see many of this battle wounds. The drainage tube. The curly q's are alloy coils from closing "collaterals" or rogue vessels during past Cardic caths. You can see the permanent metal wires that hold his sternum together. On the outside, he's a typical toddler, all soft skin and squishy sweetness but the X-ray shows a different story. This kid has known more pain than most adults ever will. What a warrior.
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.
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.
Santi and I were both able to have a restful nights sleep last night. We had almost 5 hours of uninterrupted sleep, 10pm-3am. When Santi woke up at 3am, he called for me, I slid into bed with him and we just cuddled. I've been playing a Reiki sound healing station on pandora throughout the night and it's really helping us sleep. He stayed awake until 5:30am, which is fine, more cuddles. Oh, and he had a bowel movement. I'll spare you the details, but it was very exciting!
He started today off by sitting in the chair again. Santi did great in the chair, he slept, watched a movie and spent a total of almost 4 hours sitting up.
During that time, he took a break from sitting to stand up. He stood with my help for 3-4 minutes and even took a few steps. The highlight of my day was getting a high five and a fist bump from Santi after his strenuous workout.
Napping in the chair
They also removed Santi's medial chest tube this afternoon. WHOO HOO! He has been resting comfortably on morphine ever since.
1 chest tube out, 1 to go!!
UPDATE: more standing and he ate his first real food since Wednesday!
Plain noodles, peas & carrots
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
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.
We made it through our first night!
Santi was up every hour and a half to two hours asking for water and milk. He's still on a fluid restriction so all I can give him is the damp sponge on a stick, which I kindly refer to as a "sponge-pop." He gets upset at first because it's not even close to what he actually wants, but then he realizes there are a few drops of water on that sponge and he sucks the hell out of it.
He also had a slight fever throughout the night. It lingered around 102 a little too long so his nurse had a cooling blanket on him most of the night.
Overall it was a good night. Actually it was like the greatest night ever. No emergencies. No bleeding. Minimal crying. We both slept, a little. It was really more than I could ever want for our first night post-Fontan.
the cooling blanket
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! 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.
Dr. Starnes and the surgical team stopped by for 3.5 seconds to say "he did great!"
We waited all day to hear those three little words from that insanely talented man. We let out a collective sigh.
Recovery starts now.
I've said it before and I'll say it again, surgery is the easy part. Recovery is hard. It's long, arduous, painful, stressful and just no fun. Santi is a toddler. He doesn't know why he hurts and can't move around. He doesn't know why we can't just "go go." It's our job for the duration of his hospital stay to keep him comfortable, happy and on track to go home healthy. All of the sweet cards and thoughtful gifts Santi received before surgery will certainly lift his spirits and help brighten the rough days ahead. Thank you to our loved ones for being so generous!
Please keep Santi in your thoughts and prayers. Continue to send him love, light and healing energy. He needs it all!
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.
They took him at 10:05
continue to send love, prayers, positive thoughts, healing energy and all the goodness in the universe to my beautiful son Santiago
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.
