It is amazing to see the continued and growing support and prayers that are being given for Hayden. I continue to be amazed day after day. I have written before about what it has done to Kelsea and I over the past 8-9 months to see others put our family at the front of their thoughts and actions. It has made me revaluate how I treat others and makes me more aware of friends, loved ones, and even strangers that are in need, even if it is a simple note saying they are loved or being thought of.
First off, if you are reading this because you subscribed to get daily updates, then most of the time, the post is from the night before. However, sometimes I add information the next morning, or the same day the e-mail is sent.
Much improved overnight. God answered prayers and eased Hayden's suffering and, at the same time, eased Kelsea and my suffering.... What a difference 24 Hours makes.....we've heard that one before!!!
A couple of days ago, Kelsea posted a video on Facebook and it was a perfect representation of how we felt. As my post last night showed, I was struggling. I know we are to put our worries and trust in God, but it is tough when you see your little one struggling so much. As Hayden and I were talking to God last night, we told Him that we know things will be alright and that eventually, probably before I know it, we will be home and back in our routine. However, we also asked Him for that little sign; that glimpse that would show us He is in control. I am sure God has been showing us that non stop for the past three days, but it is hard to see the good sometimes when you THINK all you have is bad. Well, the past 24 hours, HE did give us a glimpse and reassurance that He IS leading us through this! And about 5 minutes ago, before I started writing this post, Hayden and I were listening to the song on my phone. He is still heavily sedated and his left hand has been holding on tight to his vent tubing all day. Halfway through the song, on one of the chorus repeats where he sings, "Let me know the struggle ends".....Without moving his body, opening his eyes, or stirring, his left hand shot straight up and grabbed my pinky finger until the end of the song. I think it goes without saying what that did to me at that moment. Hayden had a few tears of joy dropping on him because I know God was telling me and showing me things are good. He was reminding me that He has a plan and that He is still here. It was pretty powerful.
He slept very well last night, which meant I did too. The diuretics (Lasix) helped tremendously and his morning x-ray had improved. His lungs and heart looked much smaller due to the swelling going down and they decided to hold off on the CT Scan. His face is almost back to normal, minus the mullet he has because they had to shave both sides of his head since the PICC line didn't work on the first side. Hayden has done pretty good today on the vent. Not perfect, and still struggling, but there is talks of extubating again. Kelsea and I are in no hurry. We have nowhere to be and want to make certain Hayden tells us he is ready. The doctors said they will do the ERT again tomorrow, but it will more than likely be Sunday or Monday. His new night Fellow (the one who was awesome Tuesday night and made, what I thought was, a lifesaving decision said he would want to keep him in the PICU for 24-48 hours after extubation, just to make sure he was ready. We are good with that!
Longo stopped by the hospital last night, saw Hayden and hung out with us while we ate dinner. Mom and dad were able to make it down today with a few minor supplies, Jimmy Johns for lunch, mail, and bills. They didn't stay long, but glad they got to see Hayden in a better light today. Not much is on his plate for the weekend except to continue to try to wean him from the ventilator. I have a feeling Hayden will be coming home with oxygen (whenever that may be) due to the Tracheomalacia and Bronchomalacia, but hey, that is ok! Not what we wanted, but it's not about what we want!
All for now, I think Hayden and I are going to waste an hour and watch something I look forward to all year long....one of the few Reality shows I can actually watch (besides Duck Dynasty).....Big Brother!
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