I keep starting this post, but all the exhaustion has been catching up to me and I just can't think enough to type. I mean, the hard post is already written, haha! Now is a good time, though. It's almost 8:30 and all my kids are upstairs, sleeping. The exhaustion has apparently caught up to them, as well. The three younger ones never sleep this "late".
Back to our story, It looked like David had a shot at life again. I wasn't saying anything for a few hours, until they did another echo around noon. I was beginning to feel joy again, and I wasn't going to spread that only to squash it again if things turned out to be not as good as we hoped. Over on facebook, his mother left a comment announcing his death. I was so shocked and angry, astounded she would take that upon herself before I confirmed he was gone. I confess I'm still dealing with mounting "mother in law issues". Because it was a comment, not a status, my hope was that it would go unnoticed. Of course it didn't, and goodbyes and condolences came pouring in. What a frustrating few hours, and of course it's small and petty compared to David actually living, but it's the small things that tend to eat at me. David was improving, even the bleeding at his wound sites were healing. I was able to make the happy phone calls, though those were surprising emotionally taxing to make. Such a bumpy emotional roller coaster ride. David was returned to Patient Status, rather than Organ Donor. I still have the paperwork, and just last night told him I have it if he ever wants to look at it (at this point, he does not, but had been marveling at how close he was). David was still unconscious, paralyzed, and cold. Being on a paralytic and being kept cool was to protect his brain, our big concern from this point on. The miracle of even his heart healing was spreading through the hospitals. I think I said in the last post that we were in Doernbecher's because of the ECMO machine being there. That meant David had staff from two hospitals, his nurses came over from OHSU, heart doctors from OHSU, ECMO from both, people were being trained to use the new one for OHSU. I remember being a bit alarmed at how ill stocked the unit was, they were constantly looking for supplies, not always finding them them. I don't know if one nurse noticed my face days later, but she said, "They aren't set up for adults over here, the bandages and things are all tiny, for the kids." A-ha!!!! That makes sense, and my already befuddled state of mind wasn't allowing for much thought outside of immediate needs and wants, so I hadn't put it together myself. By evening Friday, December 4, Dr Gelow ran into me in the cafeteria, covered in goosebumps again and said, "His heart is still healing, we're planning to remove him from the ECMO on Monday. I just still can't believe it." This was good news, but still scary. What if we got to this point, but his body couldn't take being off the machine? I let family know. Over the weekend, David was allowed to physically start "waking up" and was tested to see if he would respond to stimuli. December 5, he moved his right leg a couple times. The doctors would run a pen up his feet, and he tried to pull his legs back. He was responding to being pinched and poked. He scrunched an eye when a good friend spoke to him. Those monitering his ECMO repeatedly said he was definitely aware when I was just in the room, and how cool they thought that was. Monday, December 7 would be David's 44th birthday. Everyone wanted to come see him again and gather for his birthday. Removal was expected for evening, possibly next morning, as he was an add on for the day's surgery. Family was on their way, we were in David's room, when his nurse gets the call (I think it was only around noon) that they were ready for him, now! Surprised, the staff scrambled, packing everything up, hugs and encouragement given. I was invited to continue using the family laundry room and showers at Doernbecher's (the buildings are connected). Dr Gelow, who was off that week, was so excited, she still came in for the surgery. We waited in the family waiting room for a while before heading over. The ECMO lady that day was wheeling the machine back and let me know that at that point he was doing well. I got a phone call soon telling me the same. We headed over and let everyone know the surgery was going to be earlier than planned. We waited...and waited...and waited. It was getting so late, I was encouraged by family to call back and see what was going on, but was so nervous at that point that I just didn't want to call and find out he was still in surgery. Eventually I did call, and was told to come back by myself. Two women I'd never seen before were with him, hooking him up to an EEG. They didn't know anything about how long he'd been back there, or anything else. I could see he was alive, and it looked like that was all I was getting that night. Really, though I was kind of a wreck, that was good enough. I let everyone who had a long drive back home know. We were all frustrated that nobody ever came to update us, but we'd also seen several families coming through. Our best guess was that it turned into a crazy night in the ICU. Emily and my oldest niece, Naomi, had come to stay with me that night.We spent an uncomfortable night in the waiting room, my poor, hugely pregnant sister getting the worst of the uncomfortable chairs, sweet lady! My skinny niece curled up and seemed to sleep rather well. Oh, the good ol' days, haha. Next morning, I head back to David's room, hoping I might recognize his nurse for the day. I enter his room and it's actually my favorite nurse, Red-haired Jenn! (We had to differentiate, his first four nurses those two first days were Jenn, Jenn, Ken, and Jenn. Three different Jenn's!) I hugged her so hard and told her about the weird night of no updates, and that we thought the night had gotten crazy, to which she nodded and said it really did get crazy. After that we just shared how excited we were that David was doing well, and our hopes for a healthy brain. My sister and Naomi went home that day, I began a routine of going between David's room (where cell phones needed to be shut off) and the waiting room to post updates and check messages. We entered a new phase, and it's one I'm still a bit stunned over; in the best way!