Benjamin isn't doing as good again.
Yesterday afternoon they had to switch out his oscillating ventilator for another one since it was making a high squeaky noise. So they did that and his saturations dropped and they had to turn up his O2 to 80%. He had been at 40%. Usually he recovers within a couple hours and they can wean him back down to 40%. Last night they couldn't. All though the night they had him at about 70-80% and were trying to wean him down. But it didn't work. His saturations apparently dropped to the low 70's (for him right now they are aiming for greater than 85). Also yesterday when I went to put my hand on his back, he shrugged it off. So I put it on his arm but he shrugged that off too as if to tell me to just leave him alone. He doesn't like to be touched at all right now and that is hard for me.
This morning when we came in he was still at 65% O2. That's when I knew for sure things were going downhill. When rounds came to Benjamin we decided to join in this time. So we listened to them and then the doctor told us he'd like to talk to us in the conference room. Uh, oh, I thought, they never take you in there for good news. So the doctor talked to us. He said that since they took him off ECMO on February 24, he was doing good over the weekend but that since yesterday he has started going downhill. They are having a hard time keeping him oxygenated even when they change the pressures on the oscillator. He said that there is a great possibility he might not make it through and a great possibility he will. Right now in my heart I feel like he is not going to make it. I haven't felt like that for a bit since he seemed to be getting progressively better until yesterday. But now I feel like that again. They are going to aggressively dry him out by giving him diuretics to see if this will help him. But that comes with its risks too as they want him quite dried out but if they go too far it could damage his kidneys and he would have to go back on CRT (kidney dialysis machine). They basically don't know if it is the extra fluid that he has on board or if he just can’t get over RSV. They did another RSV test again last night to see if he still has it and yes, he does. He also has pseudomonas which is an infection in his ventilator tube (ETT). So it is basically just a waiting game to see if he will get better.
Right now we are feeling very down as it’s hard to know what to think. Our plan yesterday was to come home for the weekend as it is Devon’s 1st birthday and that Gary would go back to work on Monday. But now we are not sure what the weekend holds. I have very confusing emotions right now as I feel like our other children need us too but don’t know what is going to happen this weekend with Benjamin. We are planning to wait until closer to the weekend to decide as that will tell us more about Benjamin’s condition and whether we should even leave here. Please pray for strength for us right now as there is no way we can get through these next couple days in our own strength. We don’t really know what the future holds and find that difficult even though we know that God holds the future. I find the yo-yoing back & forth very difficult. I want Benjamin to live but know that if that is not God’s plan then I want him to go quickly so he doesn’t have to suffer. Please pray for Benjamin as well that he would have peace and be comfortable.