Sweet puffy boy - keeping it in perspective

This was little Mav when he was on ecmo.
This was a picture of his room. Yes, there's a baby in there.

Oh, Little Mav... He's puffy again. This was him yesterday. He really can't even open his eyes today. They've changed his dialysate to 2.5% and are doing hourly dwells to get some of the fluid off. He continues on the heparin for the suspected protein-losing enteropathy. They got a call from the lab yesterday about the alpha1-antitrypsan level - that's the test to see if he's losing the protein in his stool - and guess what they said. The quantity of poo was insufficient. They waited a week to let everyone know that. So, we're back to square one on that test. Other than that, not much has changed. They are wanting to do another heart cath. I just don't think he's up for that right now. Maybe after they get some fluid off. His little bottom is so bad right now. We're trying everything and it's just not helping. He's just not at a prime state for healing right now.

Greg started back to work yesterday. He's doing well, but is very tired and his back is sore at the end of the day. This week has been challenging so far. I didn't get home until 8:30 yesterday evening, so the kids were upset that they didn't get to see me longer. I left the hospital today at 4:00 so I could see the kids more this evening. Then I felt bad for leaving Mav. I just hate the thought of him being awake and just staring at the wall or his mobile with no one to talk to him. I'm sure the nurses talk to him, but I'm sure you know what I mean. They have other things to do. My aunt Cindy and my granny went to sit with him for awhile yesterday evening and my stepmom, Teresa, is sitting with him tonight. If you'd like an evening shift and know my numbers, give me a call. He likes his head rubbed and will listen to anything you have to say. You can't be scared of machines, lines, and tubes, though. I'm used to seeing them, so they don't bother me. I've had visitor in this week and several have commented on all the pumps and tubes and machines. My response is always, "This is nothing compared to what he was on after the first surgery." The above pictures just help me keep things in perspective. He's doing better now than he was on ecmo (thanks for all the gentle reminders when we were in Dallas, Mr. Perky).

Thanks to everyone for your thoughts and prayers. Love you all - jc