Friday, March 16, 2012

Open Heart Surgery #2

Part 1...

Where to begin? I should start with praise and thanksgiving that we are home and Max looks healthy and is back to his happy self. Thank God!

We checked in to Texas Children's, Monday March 5th at 8:00am. This was a really long day. Max was examined by the surgical team of nurses and nurse practitioners. We met with anesthesia and he had blood work done. The only bump was we were sent to the lab to have his blood drawn and they had a very difficult time of finding a good vein. After one very poor and ill trained attempt, I told them I was done and we would talk with the Heart clinic about other options to do his blood type and screen. I'm usually not one to raise hell and complain, but I wasn't going to subject Max to multiple pokes and lots of tears. We did that the first time around and now I'm wiser. When we were finally admitted to the hospital, the vascular access team came and gave Max local anesthesia to numb the pain and proceeded with collecting the blood they needed. Beautiful!

Tuesday morning began early. We were woken up around 5:45am and we were heading to the 20th floor to prepare for surgery by 6:15am. We met with anesthesia again. They gave Max a dose of Versed which is a medicine that essentially makes Max drunk and eases the separation when they take him back. It might have been inappropriate to laugh in such a serious situation, but Max was hilarious. He was pointing at all the nurses and people that were going by and telling them all kinds of things in baby babble. Apparently he's very talkative when he's under the influence. Interesting. He was very animated and had lots of smiles. Edgar and I prayed over him and by 7:00am he was heading back for his second open heart surgery in 10 months. Heavy. It's not easy to hand your kid over to strangers, even when the strangers are very intelligent, caring, and qualified. Neither one of us cried and we felt an immense amount of peace. Again, the power of prayer absolutely carried us through such a seemingly tough situation.

Throughout surgery we were given updates every hour. The updates are like a roller coaster. Because we were not sure what exactly Dr. Heinle (pediatric heart surgeon) was going to do for Max, we were very hopeful with each update to find out what was in store for our boy. We have prayed and will continue to pray that Max's heart will be fully repaired and healed, but with this surgery it was not the case. It's still not out of the realm of possibility because Dr. Heinle left the option open to make a full repair in another surgery when Max is 3 or 4 years old. He received what is called a pulsatile Glenn. In my very basic understanding, they connected the superior vena cava to the pulmonary artery which diverts half of the blue blood directly to the lungs without using his ventricle. His procedure was somewhat unique because they left the option open for superior vena cava (I think) to be reattached if in a third surgery they felt like they could give Max full function of his heart. In other words they didn't want to fully commit to the Glenn and future Fontan route because after these procedures the only thing left for him would be a transplant. We are so hopeful and we will continue to pray that they can give Max full function of his heart!

By 4:00pm, Max was in recovery and we were able to see him. It wasn't quite as intense to see him this time because we were in awe of how big he was. In his first surgery at 6 weeks old, he was tiny and the cords, wires, and tubes consumed his entire precious body. This time he seemed big and strong and honestly I was a proud momma. There's not much I can do to help heal my boy besides loving him and feeding him. I was proud that I had fed him well! I mean, have you seen his double knees and his chunky cheeks? Awesome.

They extubated him later on that night and it was absolutely amazing to hear him cry. With the tube in his mouth, you could see him cry, but you couldn't hear it because it's placed very near or maybe on the vocal cords and it prohibited him from making a sound. One of the unbelievable blessings of all of this is how I constantly feel like I'm getting to meet my son for the first time over and over again. It's incredible. When you've carried a baby for 9 months, nothing is sweeter than hearing your precious child cry when they are first brought into the world. I have the same feeling each time they bring Max out of surgery. When I heard him cry after they extubated him I cried. It was a physical sign that he had made it. It was a loud sign of how hard his body was fighting. And it was a sign of his incredible spirit. Of course he was mad, but thank God he was. Anything different and there would have been a lot of concerns. Pain is weakness leaving the body. And he cried it out because he is incredibly strong. I'm inspired every day.

Friday, March 2, 2012

Let the countdown begin...

It's hard to believe we are officially so close to surgery. One thing I learned is when the doctors tell you surgery will be within a couple of months, they don't really know the exact timeline, but they are just trying to give you a ballpark. They told us initially that Max would have surgery when he was between 6-9 months. Monday he will be 10 months.

A month ago, we were hospitalized for five days because of ear infections. I took Max in to the pediatrician because he had a really bad cold. They took his pulse ox and it had dropped to 65. Normally he's around 75. We were admitted to Texas Children's after a speedy trip to their emergency room and spent 4 nights in the hospital to receive oxygen and monitoring. This was the first time I was disappointed with Texas Children's. The first night the nurse told us she didn't want to bother Max to put the pulse ox monitor on. Later we discovered that the oxygen wasn't even at the right level and was barely on. The doctors couldn't explain why his pulse ox wasn't coming up, and thanks to a respiratory tech (that no one believed initially), they finally got their explanation. The oxygen was barely on. No wonder Max was annoyed at having the cannula in his nose. Nothing was coming out! This prolonged our stay in the hospital and it really made me want to scream, "I want my money back!" As we were being discharged, we were given a surgery date and told to not take Max anywhere if we could. We were told to keep him away from sick people and to really protect him so he will be healthy going into surgery.

Sunday he developed a runny nose and a dry cough. I became pretty worried. We waited 5 weeks and hadn't gone anywhere and now I thought he was coming down with a cold. I've been in constant contact with Max's cardiologist and it seems like he just has allergies. Monday, when we check in for pre-op, they are going to do some checks for infection to be sure that he's clear for anesthesia and surgery.

I am a whole range of emotions. I'm hopeful for surgery and when I picture what needs to be done to fix his heart, I have a lot of peace. I'm praying that they will be able to do a full repair and this will be our last surgery. Of course I'm scared. I'm scared of infection. I'm scared of seeing my little boy laid out after surgery. It's different this time. He's bigger. He's more mobile. He's talking. He has a personality and I know him. He's so joyful and I'm scared to see him in any other way. I'm scared to see my son suffer. When I think about him suffering, my heart is so heavy. I know he will be comfortable with medicine, but it's still more than anything I have ever endured or could even imagine. When your kids go through things like shots or a finger prick, I've felt that. I know what it's like. I can confidently tell them it's going to be ok. The pain is only temporary. I don't have that confidence with open heart surgery. And then I'm brought to my knees because I inevitably think of the Blessed Mother. She watched her son suffer and was supernaturally strong.
Hail Mary, full of grace...
Lord, grant me the grace to get through this.