First let me say thank you so much for all those who have prayed and called/emailed/commented/etc that to let us know you are praying.
I'll give you a quick update as of now. Dillon was just taken off the PICU floor and sent to the Pulm floor, which is good because they don't consider him in as much danger as he was. They have had him off all oxygen since 10am and he is doing great - as long as he keeps the CPAP on. They want to take him off CPAP for a few hours and use oxygen, just to make sure that he could be taken off of CPAP at home for therapy and stuff if needed. He is so comfortable - probably the most comfortable I have ever seen him in his whole life! He is cooing a lot when we are in the room walking and touching him. Yesterday they had him on 4 liters of oxygen because every time we left it seemed they were giving him seizures meds for things that weren't even seizures. But we talked with them and cleared things up so they won't give him the drugs for the things we are telling them are not seizures.
It looks like the allergy medicine is making a HUGE difference! He has 1/100 of the secretions he had before. So they are not even thinking we need to do the Botox injections! Praise the Lord!!!! I really didn't want to inject a toxin into his glands, so now we don't even need it! They talked with me about it though and are saying that 100% of the time the kids never have pneumonia again - even kids like Dillon. It is something they would have to sedate him for then in radiology inject it into two glands in his neck then every 3-4 months he would have to get more. But they are finding after 4 to 5 treatments the kids need it less and less frequently until they don't need it at all anymore. We have lots of decisions to make here soon!
Our new room phone doesn't work either, but it is a large private room so Jay can play and I don't have to worry about him making noise. What a blessing!! It will make it so much easier for me, plus the computer is right outside my room so I can be on the computer while Jay is in there sleeping (like right now).
What God has shown me: I am finally able, for the first time since was born really, to claim the promise "all things work together for goo to them that love God to those who are called according to his purposes." Why? Because I know this is NOT good, I do not like being here, I don't like the emotional roller coaster of not knowing what is going to happen to my little boy, I don't like being away from home, I don't like to see doctors poke and prod at him. But we have given out so many of his stories and there are so many hurting families here it is humbling. I can only pray God will use Dillon's story to encourage other families here and bring them to a point in their life where they see that they can not only trust God with their child, but with the own life too. To see that sin separates us from having a relationship with the God who knows all and is in control of everything, no matter how crazy it seems here. So you see, this isn't good, but I have a feeling God is using this to work all things together for good.
Song:Yesterday I was singing over and over the chorus of a song Melissa S (from church) wrote. I think I have them all right...
Lord, here's my Issac, I give him back to you,
And when you see my Issac, you'll know my faith is true.
And if you choose to take him, Lord,
Your promise will not cease.
For even though I don't understand it,
by faith I do find peace.
I think that song sums up everything else I need to say.