We Need Your Prayers for Another Miracle

Luke doesn't give us a chance to catch our breath. It seems like as soon as we get a chance to catch our breath something else happens. We need your prayers for another miracle folks.
Last Thursday, the docs attempted to take Luke's breathing tube out to see if he could breathe on his own. He only made it a few minutes before they had to re-intaibate him. They told us not to worry, Luke just simply wasn't ready to go on his own yet, but we would try it again this week. The doctor on call this week was shadowing the doctor on call last week, and was present for Luke's attempted extibation. He had a hunch that something more was going on with Luke than a simple, "he's not ready." So yesterday he sent Luke down to the OR where they put him under anesthesia and took out the breathing tube. While he was still asleep and breathing on his own, they dropped a scope down his airway to take some pictures of what was happening down there. They discovered that Luke's left bronchus is "floppy" (the highly technical medical term they used). It closes when it doesn't have the positive pressure from his ventilator. The bronchial tubes are cartilage - like your ear or your nose. In very young babies, the cartilage of of the bronchial tubes has not hardened like it has in adults - making it more "floppy". So they re-intibated Luke and brought him back to the PICU.
We are basically faced with two options. 1) They could do a tracheostomy. They would cut a hole in Luke's throat and insert a permanent breathing tube in the hole. Since Luke needs the positive pressure support of a ventilator, they would hook that up to his trach and he would go home on a ventilator. It's extremely difficult for a child to learn to eat with a trach. Since Luke never has learned to eat in the first place, that makes it even more difficult. So, we are also looking at them putting in a gastrostomy tube (or G-tube). This would be a permanent catheter inserted into his stomach where he would receive breast milk for as long as he needs the ventilator/trach. It is difficult to estimate how long Luke will need the trach while his bronchial tubes grow and strengthen and harden. Likely he will need it until sometime between his second surgery (at 9 months) and third surgery (at three years). That's a big time window, and we're looking at several months to three years.
Option 2) is we could keep him in the hospital on hospital ventilation support until he can breathe on his own, which again would be several months to multiple years, there's just no way to tell. Needless to say this isn't really an option for us. We have to take him home.
Last night, I admit, I lost faith. I despaired. Maintaining a trach is a huge job. You have to clean it, suction it, and change it. Plus, Luke will constantly be attached to his ventilator. Though it's supposedly only the size of a laptop, we will have to haul it and all his back-up trach accessories everywhere we go. We would only be able to leave Luke with a caretaker who has undergone extensive training on how to care for his special needs (that's assuming I could ever let him out of my sight). Because Luke will still be on the ventilator, he still won't be able to make sound - no crying to alert mom and dad that something's wrong; no cooing and laughing when we play. Also, no swimming or submerging in water. I think the most heartbreaking for me is that it precludes nursing. I've gotten through countless tedious pumping sessions by thinking about the time when I would finally get to hold him to me and bond with him while he nursed. The death of yet another one of my hopes. We've buried and grieved for so many.
Last night I cried and cried. I doubted. I wondered how we will take care of such a special needs child. I worried about screwing up and that screw up being lethal to our child. I think that this is such a huge mental and emotional hurdle for me because we were ready for an extended stay in the hospital, but the expectation was that when we went home, we would leave this nightmare behind us as we prepared for round two at 9 months. Now it looks like this nightmare's gong to follow us home. Before last night I knew I was going to struggle to find the energy to do normal mommy things after staying so long at the hospital - how in the world am I going to find the extra energy to take care of a baby with a trach, a ventilator, and a G-tube without the everyday little gifts of joy that other mommies get like hearing her baby coo or cradling him at her breast? You think taking your first baby home for the first time under normal circumstances is daunting - lets add a trach and a ventilator...
It may be selfish, but I really don't want to do this. I'm DREADING doing this. I don't know if I CAN do this. I hope it's not too much to ask for a little bigger sense of normalcy, because I'm going to ask. I want Luke to have a more normal upbringing. I want him to experience pleasure in tasting his food. I want him to learn to walk without having tubes attached to his neck. Selfishly, I want to eventually be able to leave Luke with a sitter and go on a date with my husband again. I don't want to have to cry as Luke struggles and I have to hold him down to change out his trach tube. I want to get some sleep instead of lying wakeful because I'm afraid Luke will get into respiratory distress without me hearing that he's in trouble. No this is not a life or death thing, but it certainly is a quality of life issue - for both Luke and his parents.
Folks, when Luke was in the NICU, you prayed that Luke would be able to use his left lung. He started moving air through that lung a week later. You prayed that his heart rate would slow, and a few days later he went into the cath lab and came out with a brand new (and perfect!) heart rhythm. Please stand with me and ask God for another miracle. Nothing is too hard for him. A collapsing airway is not harder for him than a collapsed lung. We are going to wait two weeks and repeat the scope procedure to see if anything has changed. They are not expecting it to change and are fully expecting that they will do a tracheostomy on my son at that time. Wouldn't it be fantastic if God stumped them again?? If in two weeks they walk out of the OR and say, "We can't believe this, but his airway stays open!" My faith has been renewed. Dr. Kao made the call to wait two more weeks before doing the trach, and I believe it happened that way specifically so that we could stand and be amazed once again at God's work in Luke's life.
We ask that you pray once again. Please pray that Luke will not need a tracheostomy. If God decides that he does need it and we need to go that route, please pray that David and I will have the strength and the endurance to handle Luke's care. I admit. I'm tired. I've had it. I don't think I can take one more thing. I need your prayers for my son and for me. Thank you for your faithfulness in prayer. Thank God for his faithfulness and mercy in all things.
We pray that you are blessed as we are.
Rachael & David