Yesterday morning they turned off the PGE (med that has been keeping valve open) and Landon did not tolerate it. The doctor told us sometimes it takes up to 24 hours for the patient to react to it, but Landon let them know within the first hour that he wasn't having it. His Stats went way up and his blood pressure dropped dramatically. They resumed the PGE and within a couple hours he was stable again.
We spoke with Dr. Bryant last night and he told us that it is going to take patience to really determine what is the best route to take. We need to wait and let Landon decide. He would like to try to take him off of the PGE at least one more time before they do surgery to replace the valve. During rounds today they decided that since they will be waiting for at least a couple days to do surgery there is no reason to keep him sedated and on the ventilator so today they will be weening him off of those which is great news! This means he will be fully awake and breathing on his own since his first days of life. This means daddy will finally get to hold him. He's been waiting so long :)
We had an exciting morning already today. We got here and found that Landon has a nasty red rash on his neck. They told us that they just discovered it and it's due to moisture and him not being able to move his head. They called a wound specialist and hopefully it'll heal up quickly.
Ryan and I were over his bed and his nurse was monkeying with some stuff when I started to notice him squinting his eyes and slowly he opened them. I'm so happy that every time he's decided to open his eyes we've been here. I think it's because he hears our voices. He had them open just long enough for me to snap some great pictures of him looking up at daddy then he fell back asleep.
I was in the bathroom when I heard an alarm going off, I rushed out to find two nurses and Ryan around Landon. I guess his breathing tube came undone and his nurse wasn't in the room so we had to call her. Ryan found what was wrong and put it back together before she even got back. He's so calm when it comes to stuff like that. Landon is so blessed to have such an amazing papa.
So they just turned his ventilator down from 24 to 20 and their going to give him an hour before they try to turn it down more. Prayer requests for today would be that he reacts well to the weening of the ventilator and the meds and that he is able to pick up breathing on his own again.
We just take things one day at a time. As much as we wish we could just rush through all the hardest parts and get to the recovery phase so we can take him home, we realize that this is going to be a lengthy process. Landon overcomes so much each day with every small change they make for him. He is an amazing child and we are so proud of how he is doing. The nurses all love him and marvel at his strength. He will grip your finger and he won't let it go :) He will do whatever he can to have his hands up by his face no matter how many times they put them down by his sides. Now he has to wear little socks on his hands because he loves to play with his face and put his fingers in his eyes. He actually sucks on his breathing tubes like it's a pacifier :) Even while sedated he is our Landon and we are loving everyday we get to know him more :)