Jordan in his Halloween outfit last Sunday when we were coming to Atlanta for his Cardiology appointment. Pa (my grandfather) texted me and said "Jordan didn't like being dressed in these outfits and that he needed to come live with them." If we could have stayed at home a little longer he would have been dressed in his Halloween outfits all week. Guess us being admitted into the hospital is Jordan's way of saying he doesn't like wearing girly outfits. I promise if he doesn't like them that much I will never make him wear them again.
Jordan is having an OK day. They tried his CPAP trials during the night and he passed one and failed one. They said his gases were not good on the second one and they would keep trying throughout the day. It was very disappointing to hear that he wouldn't be extubated today. It's just heartbreaking to see him get so aggravated with the tube being in his throat. He wakes up and instantly starts gagging and failing his arms all in the air. They are having to keep him sedated with versed or pain medicine so he will tolerate the tube. Yesterday we had to put socks on his hands to keep him from pulling out the tube. He has such a bad attitude! Everyone keeps wanting to know where he gets it from...I don't know where the attitude comes from! LOL All of the nurses and doctors keep telling us that his attitude is a good thing. That tells them that he is a fighter!
They have already done one CPAP trial today around noon and he failed. They keep telling me its normal. But I don't want to be normal! I want it to be like our first time being admitted to the hospital where he was the ROCKSTAR! I guess this is God's way of teaching me patience. One of the nurses came by and talked with me earlier to reassured me that he is still on the right path. That we are moving forward and to try not to get aggravated. I guess we were spoiled from the first surgery. They aren't going to make any sudden changes today and keep doing CPAP trials. They did see on his xrays that he has a small pneumothorax (a collection of air in the chest cavity). They will continue to monitor it and hope that it goes down on its own. They say its common when they have chest tubes.
Please continue to pray of him and us. Today has been one of those days for me. It's just depressing being at the hospital day in and day out. It's so sad to see all of these children with such critical illnesses. I just don't think its fair and I wish I could take it all way from them. I guess I never realized how many kids were affected by illnesses until now. I have met some wonderful people already and our journey has just begun. We've met several families this week that have newborns with HLHS. We have all started talking and finding comfort in one another. It's so hard to walk down this unknown path but it helps when you have others that know exactly how you feel. I would like to ask everyone to please pray for these families!