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. 

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