Jack is doing great--still tolerating feeds as they increase them. He is still doing good on his oxygen. He looks around a lot more and snuggles down with us when we hold him. He only cries when he is being messed with and calms down quickly. The last time he was weighed, he was almost 2lbs 13oz!
So Luke takes one little step forward and then end up 5 leaps backwards. He has a great day yesterday until the afternoon and then he got bad again. He had an episode after being suctioned where he dropped his heart rate and oxygen levels. After that his oxygen levels stayed low and they had to turn him back up to 100% oxygen. They did a chest xray--which looked worse. One issue is that Luke tries to breathe over the vent and doesn't let the vent do the work for him. The doctors tried him on a regular vent but his blood gas was worse so they decided to put him on an oscillator. Before they did that the doctor decided to give Lucas Vecuronium which paralyzes muscles to see if that would help him relax and not fight the vent. They also increased his Morphine and Ativan doses to keep him comfortable. Once he was on the oscillator, his gas was a little better and his chest xray looked a little better. They started him back on antibiotics and put a catheter to drain his urine. I was at the hospital until midnight last night while they were doing all this and trying to get him settled. Today he is doing okay--gasses not great but not bad either. He is still on 100% oxygen and his nitric is still at 20%.
So I am so frustrated and don't even know how to pray right now. I keep praying for his healing but that does not seem to be happening. I know that I am impatient but every time he gets a little better, he has huge setbacks. Him being on the oscillator is a big deal and I don't know much more they can do after that. I just look at him and he is so perfect but so sick. I just want him to be better or at least making some consistent progress. I want him to respond to the antibiotics, the other medications, and the vent changes. I keep praying for his healing and that is not working so what else do I pray for? I don't want him to suffer but I want him healthy and better. I know that God has a plan but I cannot and do not want to think that it is anything but healing him. So how do I pray? How do I pray for my little sweet perfect boy?
4 comments:
I'm just praying that God will put His hand on that little boy. When you look at his perfect little fingers and toes remember that God did that. He created every part of him and He has been watching over him this whole time. He knows every hair on Luke's little head and every beat of his heart. As much love as you have for him, God loves him more. Don't think of it as struggling to get God to heal him. Think about it as talking to someone who cares deeply, intimately about the life of the little guy that you see. Philippians 1:6 says, "He who began a good work in you will carry it on to completion" I don't know what that completion looks like for Luke. But I do know that God is faithful to His promises and when he says in Matthew 11 that when we come to Him He will give us rest for our souls he means that even in the middle of chaos. I'm praying for a miracle in the life of your little boy and I'm not giving up! I love you guys :-)
I'm praying for you guys! I don't know you personally but we attend NLC as well.
We're praying for God to give you peace through all of this. We know God is in control of the situation and his hand is on all that is done for those little boys. He has a work created for them and he will continue to take lead in that work. Love God, love each other and love those boys. Trust God and trust that he has complete say in those beautiful angels lives!
I believe we all know that God has promised us great things but sometimes it is difficult to not necessarily remember that promise but have faith in it.
"God is not a man, so he does not lie. He is not human, so he does not change his mind. Has he ever spoken and failed to act? Has he ever promised and not carried it through?" Numbers 23:19
Hi, Ken and Rachel.
My experience with Ethan's birth was not as intense as you are going through with Luke, but I remember praying at the time that I didn't know whether or not he was going to stay with us---"God, whatever happens, keep my faith intact! If I lose my faith in You, his short life has meant absolutely nothing. You gave me this child...he is Yours, not mine, You have only loaned him to me until You decide to take him home with You. Let me praise You in this storm and when we have passed through." It was very hard to be in a hospital bed watching your child whisked away in an ambulance not knowing what his condition would be in three days when I saw him again. I continue to remember Ethan is His child through all the illnesses we've been through over the past two years. Just cry out to Jesus; let Him hold you in His arms and cry on His shoulders. He will see you through. I am praying for both of you, Jack and Luke. I can't imagine what you are going through, but I know God is faithful. Many prayers sent your way, Melanie Brown Powley
You don't know me, but i've been following your journey after a prayer request posted by Rachel Johnson Wentling. You are in my thoughts and prayers daily and I am praying for the peace that passes all understanding. Your boys are precious! Enjoy and cherish every moment!
Sharon Gravley, Rock Hill, SC
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