I woke up earlier that day, took a shower and headed to the hospital. Since you were an add on to the OR, we didn't know what time your surgery would be. I parked my car and as I was walking towards the hospital, the phone rang, an "Unknown" number, that's when I knew, they were telling me that it's about time. I hated it honestly. The nurse called to tell me that your surgery will start in an hour. I said I am walking in now.
When I got there, I couldn't help but to cry.... you were laying there, sleeping so peacefully with the mask.
I had to take pictures of your neck because I know that for years, it will never be the same.
I held on to your hand, telling you to not worry and that I will walk with you and hold on to you and NEVER will let you go no matter what happens and that things will just get better from here on.
Since they couldn't wheel you down with the vent, they needed to know if they could just put the nasal cannula with oxygen or they have to find an alternative. Honestly, I was praying that they would just wheel you down with the nasal cannula, that way, I can see you one more time without anything connected... just the feeding tube :)
I was able to see your last yawn without the trach....
And... was able to see your face one more time without the mask and trach for a long time.
A few minutes after that, Dr Patrick Olamu came... he is the anesthesiologist for the surgery. He again explain to me what he will do and thank goodness Shelley was here to warn him about the sedative that most CCHS kids have issues with. He checked and said that Laynson has used it 2 times and it shouldn't be a problem for him. Soon after that, you were wheeled to the OR, honestly, I had walking down there and seeing you being pushed in for a surgery that I did not want you to have but you had to.
Grandpa, Miss Shelley and I waited in the surgery area. Again like I keep saying, God sent an angel (Shelley) to me, she sat down for the time that you were in the OR, telling me lots of stories, explaining to me about things that I don't know and best of all, giving me hope.... hope that you will survive and will be as normal as possible. She didn't have to come at all.... but she did, not even my siblings came but a stranger... that I have not even meet would come, hold my hand and walk me through the darkest moment in life.... God still loves me, that's what I keep saying. Even though it may seem like he doesn't by taking away a healthy baby from me but he did not abandon me. Thank you Shelley.... I don't know what else to say.
Shelley told me to be prepared, at first in my mind, I could envision a trach but she's correct, as soon as I walk into the room.... I just broke down... It made me so sick till I felt like throwing up. It's like seeing a knife cut through my sweet baby boy's throat and he was there, laying down lifeless. At that moment, I honestly regret for agreeing to this.
It took me a long time to finally have the guts to go close to him to snap some pictures. He open his eyes for a while, looked around and went back to sleep. They needed him to not move for at least 5-7 days.
I left early that day with a heavy heart. I feel so sad leaving the hospital that day, well, everyday but especially that day because I knew that there is no turning back but of course I know that this is for the better. I know that by doing this... we are one step closer for you to come home... come back to your family, the one that loves you deeply. Take care my sweet baby boy. I am so very sorry that we have to make this decision but in order to keep you living healthy.
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