Well Here we are on our Roller Coaster

Well boy we have another roller coaster week. Elijah was put on the regular floor on Friday and did pretty good. After several days he began to have more problems breathing regularly, which caused some more concern. On Tuesday night we were moved back to the PICU. Elijah did well at first, and was weaned from his high flow oxygen at a very fast pace. This was not a good thing. As of yesterday morning he started having troubling keeping his respiratory rate down and was extremely cranky. He has been crying a lot without being able to be consoled at all. He arches and stiffens his body and can't even be straightened out by Ryan (and he's pretty strong). So as of today we are still in PICU. He is still very irritable we think due to his tracheomalacia (floppy trachea). Plans for the next few days include another bronchoscopy to look at his trachea to check for any improvement. To increase his reflux medicine since we are pretty sure he is having some acid reflux (stomach ph is low...not good). If there has not been any improvement in his trachea then we are going to need to readdress an aortopexy (stitching his aorta to his sternum). Ryan and I don't want him to have surgery, however if this is the best for him we will be on board. We praise God for the hours that Eli was able breath on minimal oxygen. And we also praise him for the trouble he is having, which lets us know what we need to do next. One thing is for sure you learn that you have to always look to God not just in the good but also in the bad. It is just like Job said that we need to praise God in the good and bad times. You know what they all will ultimately glorify God if we allow it to. When he was doing good we were very quick to question whether it would last and what would happen next, but then we realized we needed to praise God for the moment and pray about the next moment.
While I have been here all the verses and bible study I have done has lead me to things that tell me to cast all my anxiety on him, wait on him, be strong in him, give him glory in all things. I think in life we sometimes take our eyes off God and look at our situation and think how could this get better, but he has a plan if we let him work it out.
I can say this has been a definate emotional roller coaster but holding on to God's promise never to leave us or slumber has been so reassuring for both of us. Please continue to pray that Elijah would be healed according to God's plan and his timing and not ours. We have given Elijah to God and know that he holds this situation in the palm of his hand. He loves him much more than we do and will do what is best for him.

Also, please pray for Matthew as he is away from us. And for us as we are away from him. We really miss him. This is just another part of the journey we are on having our family separated by hundreds of miles. Boy, I never dreamed this would be part of my future. But you know what God did and I thank him for the trial in order to refine me during the process. I pray that if GOd would chose for us to bring Matthew back to us in MN he would let us know. We may be here for at least another month, especially if we have another surgery. That is way too long to be separated in our minds, but we want to do what is best for Matthew.

Thanks for all your prayers and storming the gates of heaven for our family. Please remember a family we met here. They are the Roth's and they lost their son today after a long battle. Please keep them in your prayers. Their son was born on the same day as our Eli and was his roomie when we got here.

Talk to you soon,
The Frazier 5