The plan is home in the morning! We cannot wait. Alex took a LONG time to wake up on Saturday. He was so funny and drugged. His stomach was considerably more distended again so we wound up doing an xray and draining his Jtube again. Yesterday, Alex stayed in bed most of the day playing quietly and watching movies. Last night was his best night pain wise. He pushed his button once before bed and then slept through the night. When the team rounded this morning we decided to take him off the pain pump. He has handled it well today. He has complained of pain a few times, but mananged to tough it out knowing if he needed pain meds it means we can't go home.
The plan is to go home tomorrow on full TPN/IV meds. He is getting nothing in his tube at this point. We are also back to draining his G tube. We will follow labs and see how Alex feels and slowly try and get some meds into his tube. When we can give some meds without pain and/or a big increase in his pancreatic enzymes then we will slowly try and get some feeds going.
The doctors have also decided we need to cancel his Heart Cath. It was scheduled for mid April. They feel like he needs to be closer to his baseline before we undergo anesthesia and put his little body through more. We have also decided to reschedule our 6 appointments we had scheduled for next week. We need some quiet time at home!
We are so grateful for everyone who has prayed for us over the last 12 days. Alex is definitely feeling better, but still has a ways to go to get back to our baseline. Everyone who saw him a week ago is amazed at how much better he looks. Now we need his energy and endurance to return. We saw sparks of our spunky guy today.
PS- I have a very specific prayer request. Alex really needs IV arginine. It is on national backorder. We need some vials to be found for our little guy. Otherwise we are in a rough spot.