2/13

Today is a new day. I say that because I found myself frustrated and scared many times throughout the day yesterday. Peyton still had a hangover from the cocktail of drugs that had been heavily pumped through his system over the weekend/week. He was not himself...distant, out of it, bug eyed, scared, unemotional, tremors. Dr. Jennings stopped by first thing to check in on us and by the tremors that Peyton was having he thought that he need a benzo (like Ativan) in order to mellow him out. He gave direction to feed him as much as he tolerated it and work on chest PT in order to help teach him how to cough again. Soon after the pain team rounded and were weary about introducing a benzo and thought that we should try small doses of the drugs he was on in the ICU to see if that would help stabilize his tremors. I worked with the feeding team and Peyton took 15 cc's of thickened Pedialyte. They said I could try again in a couple of hours. I tried to put Peyton down for a nap and as quickly as he fell asleep I watched him wake himself by violently thrashing around his crib. I called the nurse in because his pupils were very dilated, he had large bug eyes with a scared look to them, and was throwing himself around the crib. The head nurse came in and said that his proprioception was off due to the drug withdrawals. We tightly swaddled him and put barriers on either side of his body so that he could feel safe in his bed and put calming music on. He quickly calmed down and his pupils began to go back to 'normal.' We called the pain team down to assess and they agreed at this point that introducing a small amount of Ativan would be in our best interest. Once we did that the tremors dissipated and his pupils came back to normal. I tried feeding him a few times after this and he would throw everything right up. We agreed that it was best to put another IV in since he lost the one that was put in his foot before we left the ICU in order to administer some fluids. He let them put the IV in without a cry. After a while he started to show signs of his normal self. He grabbed for his blankie, he sucked his thumb here and there, and he sat up curiously looking around. Chris came to take over and stay the night. They had an uneventful evening and both got some sleep. I woke up to a text from Chris with a picture of Peyton smiling! He also told me that he had started eating and keeping the food down. This news made my day. We are working on teaching Peyton to cough and doing chest PT. We have a Endoscopy and Bronchoscopy scheduled for tomorrow afternoon to assess the esophagus and the front of his airway. Depending on what Dr. Jennings sees tomorrow will tell us if we have to have an aortopexy at the end of the month or if the thoracotomy was enough to fix his ever so complicated airway. Once again, thank you for your support and prayers.

 Peyton post proprioception scare