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!
Santi's Fontan has been postponed.
CHLA called us this week and Dr. Starnes is no longer available on October 16th. Santi will now have his surgery on November 6th.
Having something like this hanging over your head just weighs you down. We're as prepared as we're going to be and we are ready to face the Fontan. At the same time, I take comfort in knowing that it will happen exactly when it's supposed to.
So we will enjoy the next few weeks at home, make time for some more adventures and continue to keep Santi happy and healthy pre-Fontan.
There is no way to tell how long he will be at CHLA recovering after surgery. The quickest discharge I've heard of is 7 days (the amazing Zoe Lihn)! I'm prepared for a 2-3 week hospital stay. Anything less will be the most wonderful surprise. Santi will have at least 8 weeks of limited activity while his body heals. Can you imagine limiting the activity of a toddler?!
If you've ever spent any time with a two and a half year old, you know they have the attention span of a goldfish. Our generous and supportive friends have been sending the sweetest surprises for us to give Santi during his recovery. I imagine that even on the toughest days he will find something to smile about. BIG THANKS to our loved ones who have Santi in their thoughts and prayers and who have sent such thoughtful gifts for Santiago. We love you!
I know, I know...we were just there! But Santi had the greatest time we wanted to squeeze in one more trip before his Fontan.
The first step towards the Fontan is having a cardiac catheterization. It's a procedure where they enter the heart with a tiny catheter and scope, to get images of the heart and even close pesky vessels and veins (collaterals) that have formed and are making the heart work harder.
We took Santi to CHLA for his cath this week. On Tuesday they took care of all his vitals including X-ray, EKG and echocardiogram. We returned early Wednesday morning to check in for the cath. Since they use general anesthesia, Santi could only have water up to two hours before the procedure. He didn't seem to mind. He brought all of his cars and kept himself entertained as we moved from waiting room to waiting room.
This was his third cath and the fifth or sixth time we've had to turn him over to a team of doctors and nurses. Seeing them wheel him away never gets easier. In fact, the more aware he is of what's going on, the harder it is for us. He looks at us with sadness and confusion. His eyes plead, "Why are you letting them take me?" It just crushes us to pieces.
Overall, his cath went well. His heart function is good. They coiled a few collaterals. There were no surprises. Except when it came to waking up from anesthesia. Santi had a rough time waking up. He was disoriented and confused (rightly so!). But he thrashed around so much that he opened up the incision in the artery in his neck. As you can imagine, he bled quite a bit. By the time they allowed Abe & I into the recovery area, Santi had a huge compression bandage around his neck. He also had a terribly sore and scratchy throat from being intubated during the cath. My poor baby was so uncomfortable and upset.
For the next 7 hours we stayed with him in recovery. He had two doses of dilaudid, an albuterol treatment, a steroid shot to reduce swelling in his throat and a dose of Tylenol.
We were transferred to our private room around 7pm. Santi showed little hints of his true self peeking through the pain and medicine. I kept wondering when my baby would be back to his sweet self. He even managed to eat a few bites of his dinner. With the help of more Tylenol and a belly full of milk, Santi fell right to sleep. But not for long.
He was up quite a few times throughout the night. Oh, and it was around 1am when I knew my baby was back! He woke up and wanted to go walk the halls, which we did. He wanted to cuddle on my bed (aka, the couch), which we did. And he insisted on driving all of his cars in the window sill, which we did.
He stayed with me on the parent bed for the rest of the night. No complaints here. I want nothing more than for him to feel safe, loved and comforted. We had a restless night, but we were together and that's all that matters.
The next morning he had a series of Doctors come through to check on him. Once they saw that the morning X-Ray showed no sign of fluid in his lungs we were free to go! Yay! Discharged, the best word you can hear in a hospital.
His Fontan has been scheduled for OCTOBER 16th! Oh wow! That's just a few weeks away.
For years, Abe and I had annual passes to Disneyland. We live about an hour away from Anaheim, so we used to drive up for the evening, have dinner at downtown Disney, ride a few rides and head home. Short & sweet. So easy, nothing to pack. I probably didn't even carry a purse. I'd just bring my pass in my back pocket.
We would laugh at the parents dragging screaming toddlers and sleeping babies around the theme park, pushing loaded strollers and carrying diaper bags. We'd roll our eyes and say "we will NEVER come here with anyone who requires a stroller or frequent diaper changes!"
We'll guess what?
Sometimes "never" just means until we have our own adorable two and a half year old who we're sure will absolutely love Disneyland and be on his best behavior.
The real deciding factor in bringing Santi to Disneyland so young, is his looming surgery. He'll have his third open heart surgery in October. We want to fill him up with fun and adventures before he faces the traumatic experience of recovering from surgery and staying in the hospital for an extended period of time.
To be honest, Disneylanding with a toddler wasn't as bad as we imagined. In fact, it was SUPER FUN! We did it right. We had a beautiful suite at Grand Californian, 2 day park hopper passes and the helping hands of Coco and Papa.
We made the Best memories!
Santi loved seeing the fireworks (we could see them from our balcony!), which he calls "pop pops!" We surprised him with a huge lollipop! You should have seen the smile on his face when he saw that sucker! He was so thrilled to ride the rides. I think he liked Jungle Cruise the best.
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.