Last night: Considering what Frankie has just been through, you'd think he needs ALL the rest he can get, right? Yeah, we thought so, too! All night long the nurse was irritating Frankie. Joe finally spoke up and said enough! And kindly but firmly asked that everyone be as hands off as possible. They tried to do his ERT (extubation readiness test) but he was getting bothered and desaturated so they decided to end it and leave him on the vent for today. Which I think he needed one more day. Frankie was irritable and wasn't seeming to respond to his mild sedation medication. Why you ask? Read on...
Morning: The iv that the sedation medication was going in to had blown out and they didn't know yet. So he wasn't getting any and was antsy and too awake to have a breathing tube. They switched to another iv (the one his fluid was going in to so they had to turn that off for a bit). Once he was mellow again, the iv team came in and poked 3 times to get the iv in. The actually ended up using ultrasound to get it because they were having difficulties. Once that was in, they returned to giving him fluid. Frankie has been getting a little respiratory therapy on his left lung. To be technical it has a small collapse in it. It's nothing to freak about. They do a little banging (gently) on his left side to loosen mucus. Then they suction it out through his vent. It's more like a "sleepy lung". Minor, but it's getting taken care of. The docs started giving Frankie lasixs every 12 hours to help him pee and get off some fluid since he was so swollen. No more fever.
Afternoon: Frankie's vent settings have been weaned all day. They're pretty dang low. So, the plan is to do another ERT in the morning and PRAY for extubation. I think Joe and I are as ready for the breathing tube to be out as Frankie is. It's just scary. Frankie made three small steps this afternoon. We will take any size steps forward we can get! Frankie had his epidural removed and his catheter! He's been peeing well on his own! Surgery came by and said he looks great (very good to hear that from them!) and if he gets off the vent tomorrow, they will try giving him some food through the ng tube. We shall see!
Evening: Frankie got a good amount of rest today. He hasn't had any major issues. No major desats in o2. He's holding strong. He's a tough dude! He was peaceful when I left to bring Lu home. He was a tad antsy at shift change when they messed with him but he calmed well. Joe has been staying overnight with Frankie so I can bring Lu home and let her sleep. He's a rock star dad. Joe and I are so used to being teamed up, side by side through every moment and since Lu can't come in to the icu it's been tough. My mom has been extremely helpful in watching Lu and visiting Frankie all at once. It's so hard as a mom to be in two places at once. My heart is so torn! I know Joe's is, too. We are both looking forward to Frankie moving to the floor so Lu can be in his room.
Overall, Frankie's doing fine. As Joe and I both said today, slow and steady wins the "O" race! We have to do this in "Frankie time". He will let us know when he's ready for the next step.
Side note from Joe: I love my wife and family very much and it is comforting that the other o baby is going through a lot of the same stuff. I had to towel off with a pillowcase after my shower and Frankie tries to pee on the nurse. -I asked Joe want he wanted to add and this was it!-
Please continue to send Frankie (and his O buddy and neighbor in the picu) and Hayden your prayers. We all appreciate it so very much! Love to you al!
Sorry to hear they had to put another IV line in. Strange, but it is comforting, in a way, to know that Hayden and Frankie are facing some of the same issues. Makes it a tiny bit easier to accept what they are dealing with. Stay strong, both of you, and if Frankie gets out to the floor before Hayden, tell him Hayden will be there shortly!
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