This is a photo of our sweet miracle baby that I took this morning. My heart is just breaking for him that this is what it has come to for him. Amazingly enough, he is actually doing okay, relatively speaking. His heart has stayed perfect ever since his surgery, his trachea is now perfect as well, and his lungs are improving every day. The problem we face now is that he has a raging infection in his body that is not responding to any of the medications that the doctors are throwing at it. Thankfully he remains sedated (for over 3 weeks now) so hopefully he is not feeling any of what is going on around him.
Yesterday I actually thought I was going to need to sign the forms giving consent for him to be removed from life support. He had crashed on Monday, but then was doing okay until Wednesday. On Wednesday his phenomenal pediatrician, who has been my encourager through all of this (always saying "It's not time to worry yet, I'll let you know if we get to that point), was the one to say that she thought the writing was on the wall that we were going to lose him. I had actually come to a place of peace with that outcome even before I heard it from her. There had been one night last week where he had kept his eyes open, watching me, for the whole half hour of visiting that I was allowed to have. It was the first time he had kept his eyes open and he just watched as I talked to him, sang to him, and prayed with him. As I prayed, asking God to free him from this pain whether it was through healing or going to Heaven, I looked at his face and there were two tears running down his cheeks. Of course that brought many more than two tears from me as I hadn't seen him cry throughout any of this.... Back to my story, so when the doctor said she thought we would lose him, I felt that I had made my peace with that a week earlier during my time with him since I just could not stand to see him suffer anymore.
On Thursday, the doctor phoned me saying he'd had a terrible night and an awful day and she thought that it was time to do one final assessment and then let him go. She asked if I could come Friday morning (yesterday) to be there to sign the consent form since we would likely end up taking him off of life support.
So I arrived yesterday morning and she examined him with another specialist and they found that his vital signs had improved overnight to the point where he was actually doing very well aside from the infection, and they didn't want to give up on him yet. I actually got in the car and cried after finding that out because I had really becoming settled with the fact that he would finally get to be whole and healed with Jesus and now felt like we were going to continue putting him through this horror.
The thing is, he's still fighting. Though he's not awake, every time he hears our voices, and anytime we touch or kiss him, he squirms and wiggles. So... now we pray for this wretched infection to leave so that he can continue on the road to recovery. His doctor has put a "do not resuscitate" order in place, and has promised me that we will not put in any more drainage tubes (like the ones you can see leading to the bag on his stomach to try and relieve his distended abdomen) or do any more invasive procedures. So if he crashes again like he did last Monday, he will get to be with God. I am praying that there will be resolution one way or the other before I leave for the US next Friday since I can't imagine leaving him like this. I've been with him every day for nearly 7 weeks now and I am going to have such a hard time if he passes away and I am not here. So please just pray for quick healing for my baby boy! :o)
Okay... gotta go, but wanted to put up an update!
See ya'll soon!
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