I am riding the emotional roller coaster today. I cried when the doctor came in to talk to us even though we already knew what she was going to say. Logan will be having another major open heart surgery tomorrow. They will enter in through the same incision (for the third time), and the surgery will require him to be on bypass again. My heart is torn. I am devastated he has to go through more, but at the same time I know this is what he needs. He is not his normal self, part of that is being in a hospital, some might be teeth, but the bottom line is his body is not tolerating the changes in his heart's anatomy. He is not able to keep his oxygen saturation's consistently above 80% here and we are at sea level. So when we come home to 4500 ft. he would be even lower. If we kept things how they are his lifestyle would be so limited.
I feel selfish complaining about how I feel because it is Logan that has to go through everything. But until today I was really holding it really together. But I really miss home. I miss Ashlyn and Tanner like crazy. We have been gone 2 weeks now- that is by far the longest I have ever been away from them. I want a real shower, a real bed, and normal food. Hospital life is exhausting. And I don't know if I can handle holding Logan down anymore while people poke him and cram medicine down his throat. He is getting feisty now and pushes anyones hand away that comes near him.
As I was sitting here in the hallway outside Logan's room complaining (he is napping) I struck up a conversation with a mom I have seen wandering the halls with her baby and his IV pole. Now I feel like I don't have so much to complain about. Her baby was pre-diagnosed with HLHS and when the dad found out he skipped town. So she is here alone, and will be for at least the next month. Her baby has coded (heart stopped) twice since she has been here and he is only 3 months old. I am humbled. I have Brad sitting right next to me- I have always known he was a good dad. But these last 2 weeks I have found out he is an incredible dad. And he is my very best friend. I am humbled. But I still wish my little Logan didn't have do go through this at all. I want my happy boy back.
If I could write your story son,
(Oh how I wish I could)
I'd pen for you a journey,
That held nothing but good.
Wouldn't it be perfect?
If that job belonged to me?
I think I'd change a thing or two,
While writing your story.
I'd write of lasting happiness,
The storms would stay at bay,
I'd write your story carefully,
I'd have so much to say,
You'd know not of a hospital,
Or days in ICU,
You'd only know of simple things,
Like other children do.
The sun would rise...Yes everyday,
And shine to make you smile,
You'd never know a day of pain,
You'd never face a trial.
You'd dance to music all your own,
While watching Sesame Street,
I'd tuck you into bed each night,
And life would be complete.
I'd write of picnics in the park,
And winters in the snow,
I'd write of laughter,joy and love,
I'd sit and watch you grow.
I'd proofread till my eyes grew tired,
Each line and paragraph,
And let my pen fall to the floor,
Then stop to hear you laugh.
And never would I question,
What sick children must face,
Never would I have a need,
To ask God for his grace.
I'd likely live oblivious,
Of what it means to be...
A member of this "special club",
I call my heart family.
If I could write your journey son,
Perhaps I'd not convey,
The message that HE longs to share,
"We must live for today".
Your story has been written,
Each stroke penned with great care,
He knows each thought I have of you,
He's numbered every hair.
No, I can't write your story,
Although I wish I could,
I must heed what HE says to me,
"All things work for the good".
If I could write the life you'd live,
I'd fail...don't you see?
I'll leave it in much better hands,
He'll write it perfectly.
As emotional as it is, I really believe this is Logan's Journey. Brad was researching every possible "repair" for the heart on the Internet last night and all the outcomes. Then today he said, "You know, we were lead here for a reason, and we felt good about that decision. It isn't our job to fix Logan's heart and to have the knowledge to do that. We need to trust the doctors we were lead to to do that." So we will again hand him over tomorrow and trust that he will be in the care of great doctors, but also a loving Heavenly Father. I know he has hundreds of people praying for him. This sweet baby has a way of getting into other's hearts. Thank you for your support, prayers, and love.