A few days ago, he was suffering so much and I felt horrible for him. We were all so helpless. I couldn't believe how much pain he was in and I want him out of pain. Even if that means losing him.
But now? He's been suffering for several days non-stop pretty much. (He's screaming Owie as I write this.) And I had a change of heart today. He's already suffered/suffering ... so we might as well win this fight. To me, the worst thing would be for him to suffer and then still lose the battle. So we have no option but to keep fighting and win. This suffering will have to pay off somehow.
So I leaned over his crib and told him how strong he is, how much of a warrior he is. I told him he could do this and that we were going to help him fight but this is mostly up to him so fight!. He said, "OK".
The rest of the night was full of screams and crazy breathing. By morning he was really struggling to breathe. The blood work showed he was still getting enough oxygen but only because he was working sooo hard. The docs were surprised by the numbers being stable. But I know he's a fighter. Chest xray showed left lung very "wet" but right lung almost completely full of fluid "pulmonary edema" and it's quite painful. By the time the docs arrived, he was doing "air gasping/swallowing"... think fish out of water trying to get a breath. It's so stinkin' pitiful and completely helpless feeling.
|getting a chest xray... he usually says "Cheeeese" the whole time. But not this time.|
And then he kinda fell asleep. He was exhausted. This is actually NOT a good sign. When he was screaming like a maniac, he had some "fight" in him. And now he's lost some fight. I think he'll get it back. Even as he slept, he was doing all the signs of respiratory distress.
Doc came in and said they would put in a chest tube to drain off some of the fluid. He's been on lasix and it's not making a dent ... he's pooling faster than it can come out. This is a direct line to pull the fluids.
|I was telling him what was going to happen (chest tube) and that he was fine and strong and I loved him. Didn't realize Val took the picture until she showed me later. Thankful as it's my only picture with him I have.|
Val showed up with lunch and about that time, it was time for the procedure so we had to go to the waiting room. What seemed like an eternity later, it was time to go back. They were able to get over 200 ccs of fluid immediately off his chest. They also put a temporary line in his femoral vein (upper, inner groin) so they have access for TPN and blood draws. (There are currently 9 tubes/wires going in or out of him.)
His breathing was much better but not good. Only time will tell if he still has to go on a ventilator or not. The problem is ... with his underlyng condition, it's very high risk that he could go on and never go off (be on life support forever). So we'll only do that if we have to. (But it's a distinct possibility that he'll need a breathing tube.)
|the orange is a cleaner, not blood. See the blue box? the tube coming out of that is the chest tube|
Dan and Kaley came by for a little bit. Kaley was quite emotional ... not outwardly with words but with actions (like clingy). She said she cried all night last night worried for Manny. She's the only one who has seen him in this condition. She asked if she could sleep in my bed tonight until Daddy goes to sleep. And she kept wondering how quickly she could return here with me.
|Kaley in her bow (it was the belt from the isolation gown we have to wear). Cute, huh?|
So tonight as I type this after a long, emotional day, he's sleeping (finally). His breathing is questionable. And the whir of the chest tube machine is actually quite therapeutic (like a fish tank) .. unless you think about what it is for and doing.
His weight is back down 1kg which is great news. He was 15.4 last night and 14.4 tonight (but still up from his normal 12.1)
I plan to go to bed really soon here because he is sleeping. Don't want to miss this window of opportunity for sleep.