Sunday, November 6, 2011

Memories and Thoughts on Sacrifice

Today, I am grateful for the sacrament and the chance I have to renew my baptismal covenants. I'm grateful for the other parents here from whom I draw strength. It's good to sit with friends in church.

Aaron did well all night on his home vent. He's trying to decide if he's throwing another curve ball here, though. His x-ray this morning was a bit strange, so they let him have some time and have just repeated it. I've seen almost every x-ray we've ever done on him (and let's just say that I think he now glows in the dark!) and it looks a bit stranger than the first. Hoping it's just odd, and not bad.

Anyway, this seems to be a time for reminiscing for me. Some dates just really stick out in your mind. This week has some of those. One year ago yesterday, we learned that Aaron had a very compromised airway. But his doc wanted to give him a shot at breathing. He’d never seen anyone able to breathe with so much collapse, but he pointed out that Aaron obviously had been.

Usually, if a child ends up in the PICU still intubated from surgery, the PICU team extubates, or pulls the tube when they feel the child is ready to not be on the ventilator. The attending or fellow (top dog in the PICU) is there and, of course, precautions are taken.

Then there was Aaron. When the team came to extubate him, I told them I thought Dr. M, his ENT, had said he wanted to be there when it happened. I really wasn’t sure, but asked them to call him to double-check. No problem. They did, and he did, so we put it off until Saturday, November 5, one year ago today. They also parked the crash cart outside Aaron’s room. I chose not to ask if that was typical protocol until fairly recently. I didn’t think it was, and I didn’t want to know then. I was right. It’s not.

Saturday afternoon came and Dr. M came by. Because he was known to have a difficult airway, and there was a good chance that he would not make the jump, sedation and paralytic meds were prepared and ready to go before they pulled his tube. He was put directly on a high flow of oxygen at 8 liters per minute and he tried. He tried and we watched. And he tried some more. My little guy worked with all he had to breathe. He wanted to so badly. He finally passed out from the exhaustion of trying to breathe. Somewhere in the whole process, they poked his toe to get some drops of blood for a blood gas test.

Remember pH testing in high school chem? Our bodies like to be in balance. They like 7.4. Acids and bases need to work together for a balance. It’s not great if one is too high, but if the other can come up to help stay balanced, it still works. When we breathe out, we exhale carbon dioxide, or CO2. It’s an acid. Our kidneys make bicarbs, a base. Any CO2 above 45 on a blood gas is high. Even at 45, we’d be panting like a dog just to get rid of the CO2. When you hold your breath, it’s the buildup of CO2 that makes you give up and start breathing again. Before his surgery, Aaron usually hung out in the high 50’s or low 60’s. But as long as he was there, his kidneys were able to help him stay balanced. Much above that, and he’d need some help, usually from high flow oxygen, to blow off the CO2.

That blood gas they pulled, probably five minutes into the trial, it was 130. The machine stops measuring at 130, so we really don’t know how high it was. His pH was 6.8. Doesn’t sound like much, but, trust me, the body thinks it’s huge. So we made the decision to have him trached.
I was scared, I was so scared. But I kept hearing a back-to-school speaker challenging the kids to do hard things. He told them, “You can do hard things.” And I kept hearing that in my mind over and over. And I knew we could do it. The challenge has been great, but the blessings that have come from taking on this challenge have been so huge.

The definition of sacrifice is giving up something in exchange for something else. The Bible dictionary in speaking of sacrifices in Bible times says, “Sacrifices were thus instructive as well as worshipful. They were accompanied by prayer, devotion, and dedication, and represented an acknowledgment on the part of the individual of his duty toward God, and also a thankfulness to the Lord for his life and blessings upon the earth.”

There have been sacrifices this last year. Many of them. But what I have given up in exchange for being able to love and care for Aaron pales in comparison to the blessings, both seen and unseen. I have been taught and instructed, both by family and medical professionals, and by the Lord. I have come to rely on Him for my strength. I knew He was there before, but not as I do now. I am grateful He was willing to entrust Aaron and his special spirit to our home for our learning and growth.

There have also been miracles. Many, many miracles. As I've sat here and read through my notes from last November and December, I am overwhelmed with the goodness and grace of God. I am in awe of the love and support and prayers offered on Aaron's and our family's behalf.

Many dream of angels, we hold one in our arms. And as we do, our angel ministers to us.


  1. Hi. I have a 5 mos old Bb girl with full t18, she was a premie at 30 wks, intubated at birth. She was extubated at 2 mos but she didnt tolerate it. Trached at 2 1/2 mos. She also has a gtube. She's also on vent.
    I been reading your blog since I gave birth. You and Aaron in a way gave us inspiration, and our love to our daughter , it gave us courage to push through with the trache 2 1/2 mos ago.
    Thanks to you and continue inspiring other families. :)

  2. Love Dr. M. Anytime you are in his's all good. :)


  3. Wow. Thanks so much for sharing this. I think I've been in a state of shock since my Levi was trached two weeks ago.