Monday, December 28, 2015

Our Plans, His Plans (pt 3)

I tell you, Facebook is the best outline for helping me remember what all went on this past month! Still, there are so many people and things not included in these posts, I wish I could share it all without literally writing a book. The days between Dec 7 and Dec 10 were spent just watching, waiting, adjusting medications, and trying to keep David from biting his breathing tube in half! He hated that thing SO MUCH. Keeping the tube safe was pretty much a two person job, tying to keep fingers from getting bitten. As soon as one of us would get a bite guard in his mouth, he was pushing it out with his tongue. On the 10th, a neuro team came in to assess him. They pinched him pretty hard by his collar bone, to which he tried to yell, "OW!" We were pretty excited over that. His pain response was good, I've never been so happy to see him in pain, haha. It was thought David might need a couple rounds of dialyses, as his kidneys weren't able to keep flushing all the meds and toxins in his body, buy mostly he was physically doing well. I went home for a couple days to see my kids, take care of bills, and upgrade his phone service - because after not being updated the night he was removed from the ECMO, I saw several phone calls from numbers I didn't recognize. It finally dawned on me that David had never updated his phone service from limited calls and data  to a monthly unlimited plan! I laughed so hard at myself. My own phone had been broken, I was using his. Anyway, that morning, during rounds, it was suggested that he be switched from a breathing tube to a tracheotomy so he wouldn't be expending so much energy fighting the tube. I heartily agreed and kind of wished someone had thought of it sooner. It would have been so much easier on everyone! I went home that day, my oldest brother in law stayed with him. I felt bad for my kids, but I hated being home. I just wanted to be back with David. Still, it was good to be with them The first night I was just home with Aidan and Alan. I got some stuff done, then slept. Next day, I got the little kids from grandma's house.They were so excited, we were going to watch a Christmas movie together. We also planned to get a tree, but really, none of us were in the mood, so we didn't. That evening, a I get a call from OHSU. I'm filled with dread, but answer. The nurse says, "So your mister decided to wake up today! I almost didn't call you because I didn't want you heading up here tonight!" So crazy, and no, I wasn't rushing over (the weather in our state, specifically on the coast was awful, so much flooding, roads washing out, etc. she just didn't want me out in the dark on the dangerous roads), but that's where my mind was the rest of the night! I got up there the next morning, though right now I don't even remember who drove me. I have not been driving myself at all. I know I've been too distracted, I've only driven locally. When I got there, he was still intubated, so he could only look at me and make faces. I could tell he recognized me but wasn't completely sure why. The EEG he'd had showed he'd had a couple strokes and the expected shower of tiny brain injuries, but nothing was seen that was irreversible. That meant we'd really have to be patient while his brain both healed and cleared of meds and built up "stuff", which of course was totally fine; he was ALIVE.  Not even an hour later he remembered who I was. He suddenly started squeezing my hand and not wanting my to leave him. Nurses came in to turn him and clean him up a bit as they removed more and more from his body. One of them asked the ages of our kids, and when I rattled of , "23, 21, 15, 12, 10, 6, and 3", David gave me a look of pure shock and panic! We laughed so hard, oh my gosh. Yep, we have seven kids, honey! That became a favorite story spread all over and I still laugh every time I think of the look on his face!  Next day, he was extubated. I asked how his throat felt, he said, "Raw". Then he asked for coffee! That was a no, but they let me give him sponge swabs soaked in water. He loved it, he kept sighing the biggest, most contented sighs. Then he moved to ice chips to test his ability to chew and swallow, then jello. He did great. He also started remembering all those kids we have, heehee.  Next morning, the night nurse, Tim was quizzing him on what he remembered. What was his name, birthday, who was I, etc. He asked, "When were you married? Winter?" "No" "Springtime?"  He seems to affirm, to which I shake my head, no. He asks again, "Springtime?" David, to my hearing says/sings , "Springtime, mumble mumble" Tim says, "Are you singing Springtime for Hitler?" Then they proceed to sing it together! David's nurse is a Mel Brooks fan, what are the chances of that? David hasn't watched any of his movies for a long time, but David is one of those people who can quote movies and apply a song to just about any situation. Okay, I do that part, too. David and Tim spent the morning quoting the movies and singing bits of songs. It was so good to laugh so much!  Over the days, though, I found myself reassuring each nurse that the seemingly random movie quotes and song bits were the "real" David, haha!

Sunday, December 27, 2015

Our Plans, His Plans (pt 2)

  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!

Saturday, December 19, 2015

Our Plans, His Plans

You know the saying, "We make plans and God laughs"? The bible version might be, "The mind of a man plans his ways, but the Lord directs his steps" (Proverbs 16:9). Well, we planned for this Christmas to be a really great, full of fellowship Christmas. We'd been working on the kitchen, and although it was taking us longer than we'd hoped, it was coming along. It's always been the grody room, old floors that never felt clean, cupboards that always smelled old, no back door. Although it still wouldn't be considered a dream kitchen to most (we still have no dishwasher, haha!), it was "us" and we were loving it. We were rearranging the other rooms, touching up paint, determining what could and should wait for after Christmas. This year the house would feel more "finished", we were excited to decorate and have PEOPLE over again. I was beginning to get a little antsy, David got a tummy bug in mid-November. He needed quiet and rest, so I had to hold off on projects. I'd tell myself, "It's okay, so I go over a bit into December, once I can make noise again, it should go quickly." By the weekend of the 22nd, he's having pain just breathing, so we go to the ER. They test to see if he's possibly having a heart attack, but all the tests come back clear. He got a prescription for a bacterial infection in his guts. He gets in with his regular doctor a couple days later, where his blood pressure is perfect, cholesterol is great, everything looks good. His tummy is getting no better, so the doctor tests for C-diff, and it comes back positive. David is allergic to penicillin, so he had been given clindamycin, which unfortunately allows C-diff to flourish. Fortunately we have a medical health savings account, because the medicine for it was $588!! Yikes! I don't know what we would have done if we'd had to pay for that on our own, good grief. By November 29, his guts were feeling better, but his lungs were still hurting when he breathed in cold air. He was staying huddled up on the couch, with a heater going next to him. He was feeling bad enough that I tried to get him to go back to the ER, but agreed to wait if he was able to get an appointment with his doctor the next day. I remember looking across the room and an unbidden thought came into my head, "If he dies, we'll be okay." I believe the Holy Spirit prepares us that way at times. I have had similar experiences before, but I still felt appalled at this one. Come Monday morning, he called and got an appointment for 3:00. He made some other calls, watched tv, ate the yogurt he needed because of his antibiotic. I was figuring out which projects lying around the living room I could finish, when he sits up, throws up his bit of yogurt, turn red and just looks at me. I rushed over to him, asking if we need to go the hospital or should I call an ambulance? He just looks at me, unable to speak, so I called 911. As soon as I ask for an ambulance, his eyes become fixed and blank and he's out. I'm realizing his heart has stopped, his breathing has stopped the operator is asking questions and even as she's asking if I can pull him onto the floor, tilt his head back, etc., I'm realizing I have no choice but to start chest compressions. I absolutely don't want to, I want the medics to do it, but I have to. I was remembering a conversation with David not too long ago, he has CPR training through work regularly and was telling me how  breaths are no longer given, just compressions. Just keep the blood moving. The operator said to just keep going until help arrived. I was only partly relieved when help did arrive, they still had to do four rounds of CPR before they could even get him loaded onto the ambulance. I called my parents to come and get the kids, my wonderful neighbor and childhood friend came down, she had been hoping the ambulance wasn't for us, but then waited with me. I called David's work and let them know David had just had a heart attack. I don't remember who else I called, I know there were more calls. Jeni's wife, Dawn drove us to the local hospital, where I was told the helicopter was being readied to take David to OHSU. David's brother, Robin, met us there. David was stable at that point, but clearly only barely so. We go home, get a few things, my dad then drove me to Portland. His brothers are there, we just wait for him to get out of surgery. When he finally does, a rather grim doctor explains they've done everything they can, he had a 100% blockage on his left side, they put a stent in, but that side of his heart is dead. The rest is barely moving. They are going to put him on a machine, called an ECMO (Extracorporeal Membrane Oxygenation) that will pump and oxygenate his blood while allowing his heart and lungs to rest, the hope being that his body will heal enough to be able to figure something out. Because the ECMO has been used primarily on children, we'll be heading over to Doernbecher's and staying in the PICU. So much of that time has turned into a giant blur, but family and friends came in, Facebook was beneficial for once and the news and prayer requests were shared around the world! David's brothers stepped right up and took care of me. They cared for our kids. I could write a book about how wonderful they, their wives, and kids are! David's coworkers have been amazing, they immediately began collecting money for us, sending gift cards, good thoughts, plenty of prayer.  Jeni began a gofundme, which brought in more help. Accepting money is weird for me, but I know we'll be needing it and I know all who have helped are happy to do so. At some point, my sister was able to join me and stay at the hospital for a couple days. David was hanging on, some things improving, others deteriorating.His lungs were doing better, but he developed Compartment Syndrome in his left calf and was beginning to get it in his other calf and forearms. They had to make an incision to relieve the pressure. He was on blood thinners to prevent clots from clogging the maching, so his wounds constantly seeped blood. He received many bags of blood. His feet were bruising, his skin becoming increasingly pale. He looked awful by Wednesday. Thursday, December 3, he randomly lost blood pressure. He was given calcium and it improved. Later in the day it became clear his body was failing. The doctors said if he was disconnected from support, he would be gone in a couple minutes. If we left him on, he would be gone a couple days. I trusted these doctors and could see they spoke truth. If David was going to die, we wanted to help others, we had had that conversation before and he was a registered donor. The family all came in to say their goodbyes, some to David, some staying in the family waiting room to just be together during this time. I explained to the kids that daddy was dying, but it wasn't something God was doing to be mean to us. God loves us, even when He allows hard things to happen.  We would miss him here on earth, but would see him again when it was our turn to go to heaven , which would not likely be for a good long time. That he would get to see their brother and other two siblings we know to be in heaven.  Little Mia came in and told daddy goodbye, she was going to miss him and she loved him.  That about broke most of the staff. Geez, that about broke me. We met with the donor team, where Dr Gelow, one of the heart failure doctors cried, too. She was so heartbroken for us and our kids. She apologized for being unprofessional, but I found I preferred seeing genuine sadness to a doctor unmoved. Everyone was so amazing, they were so professional *and* caring. We filled out paperwork, the family left, my sister staying with me through the night. David would be kept on support while donor matches were made, I would notify the family when he was truly gone. The morning of December 4, I stalled a good bit on my goodbyes, staying in the waiting room as long as possible. Finally, I was as ready as I was going to get. Emily and I went to the PICU, rounded the corner to see the team in front of David's room for rounds. I stalled, not wanting to walk through that this morning, though I had been sitting in the other days. I could see I needed to hurry and go, the voices were extra quiet this morning, they were shooting me funny looks. I appreciated their sympathy, but was trying to hold it together until I could leave. I was hoping his body wasn't doing too much worse, I wanted him to be able to help other people. Emily and I hurried through the group and sat in the back of his room until they were done. I did get back up to go thank the team for how wonderful they were, how relaxed they had made me, how good and personable they'd been to David, I just appreciated them all so much. They all nodded, smiled, and looked funny. I went back to my sister and waited.  Finally, Dr Gelow and Dr Hagg (his other heart failure dr) came back, Dr Gelow sitting next to me. She says, "I can't believe I'm saying this, but... his heart is healing." I'm momentarily almost angry at having potential hope dangled in front of me while trying to grasp what she is saying. They, being so careful and thorough, were doing an echo in the morning. Dr Gelow checked it and called down to see if this was even the right heart. She said there was no medical explanation, she knew we'd had people praying, and even the previous night I had several people messaging me that they were repeatedly wakened through the night, feeling pressed to pray for David. She said the heart he had that morning was now one she could work with, and to ask everyone praying to send a double dose for his brain! I'll stop there for now, this is already long and my kids really do need mom today. I will add, this Christmas may not be what we planned, but it really is the best Christmas, and astoundingly full of fellowship!