Cardiac cath

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.

We're Home!

Our little love did great in the hospital overnight. I cuddled him all night in the makeshift recliner. Making sure he got to rest and wasn't disturbed by the routine vital checks.
When he woke up Saturday morning he seemed to be almost back to himself. He was a little fussy and irritated (understandably!) by the IV in his hand and the leads stuck on his chest, but before I knew it he was happily playing. By 8am I received word that we would be released WHOO HOO! We were home by 11:30, greeted by Stella and a million puppy kisses.

Cath Update

Leaving your baby in the operating room is the worst feeling!

We checked in at 9:30 this morning, went through the standard series of paperwork and waiting rooms until 11am. Despite having his last bottle of milk at 5am, Santi was doing great...until it was time for his vitals.

He is terrified of having his blood pressure, height and weight taken! We powered through it and he was back to his playful self by the time we got to pre-op. A nurse came to get us and escorted us directly to the operating room. We took him in and spoke with the doctors. The anesthesiologist had me lay him on the table and we held his hand while he was given gas to fall asleep. Once his screams through the mask subsided, they told us it was time to go.

It is SO HARD to leave the room. Handing your child over is bad, but waiting to hear from the doctor is the worst!

At 2:30 we heard from the nurse. "He's in recovery and everything went well, the doctor will be out to see you in 30 minutes." At 3pm, on the dot, the team found us in the waiting room. "Everything went great!" She said. Whew, Such a relief!!

Santi is in recovery now, but we won't be able to see him for another hour or so.
They closed two large collaterals that were putting stress on his right ventricle, making it work harder. He did not have any narrowing, so no ballooning was needed. They also confirmed that his left ventricle is unusable and he is not a bi-ventricle candidate.
He and I will stay here tonight and he should be released in the morning.

Cardiac Cath Tomorrow!

It's been a crazy week!
On Monday we found out that his cardiac catheterization was scheduled for Friday, tomorrow! Whoa, that's too soon!

We were unsettled at the short notice and needed to get a second option ASAP! I was given the runaround by Radys records office when I called to get the echo results overnighted to CHLA. You know...policy, procedure, mail us a consent, we can send it next week, blah blah blah

So you know what I did? I went down there and sweet talked 'em. After a few minutes they said they'd work on it, it would probably take a few hours. I didn't have a few hours. But instead of rolling my eyes and stomping my feet, I graciously smiled and explained the importance of getting the second opinion. It's amazing how powerful kindness and sincerity can be. But honestly, Santi was with me and I think it was his smile that really won them over. Ten minutes after they told me it would take "hours" to get the Echo on a disk, I was walking to my car, disk in hand!!

I drove the disk to CHLA and hand delivered it to our former cardiologist, whose opinion I value and respect.
Just a few hours after getting her the disk, she emailed me some answers.

She explained that he has both types of collaterals and that they would need to be taken care of sooner than later. She said it could wait a few weeks, but after a lot of deliberation, Abe and I decided to keep Santi's appointment tomorrow. We're nervous, anxious and sad to send our baby in for another procedure but this cath will give us a better understanding of his hearts current function.

With all that excitement over the potential of a bi-ventricle repair, I also asked her for a second opinion on that too. Here what she said:
"As far as left ventricle growth- unfortunately, what is seen is not his left ventricle; he has a thick muscle that appears to be the wall between the ventricles but his LV is still extremely small."

Sadly, it looks like he is not a candidate for the bi-vent.

Santiago's cath is scheduled to start at 11:30am tomorrow. Please keep him in your thoughts and prayers. I'll keep you updated right here, on the blog.