Our morning got started early…about 2am, when I nursed Luke for the last time before surgery. At 5:45am we were en route to Dell Children’s and right on the dot at 7:30am, they took him back to the OR for his tethered cord spinal surgery.
Keep in mind, this was supposed to be our “easy” surgery. We’ve recently dubbed Luke’s hospital stays as “the Luke experience.” That’s gotten a few chuckles from the hospital staff.
We were tha-rilled to see our friend and anesthesiologist, Jeff Klein, on the morning of surgery. If you’ll remember from Luke’s December surgery, Jeff lost the ‘rock-paper-scissors’ game that would’ve let him carry Luke to the OR. This time, he won.
Dr. George strolled in, ever confident, and asked how we were doing. I replied, “I think we’re ready.” His reply? “I think so, too.” Scott and I kissed Luke, loved on him and then I handed him to Jeff. As they walked away, I saw those cute little eyes peering over his shoulder and that did it. Those dang boxes of Kleenex are too small, I say. That moment of vulnerability – of handing your child’s life to the surgeon and his team – is so…extraordinarily difficult. I hope we never have to do it again.
We waited with two dear friends, Kelli and Angela, in the waiting room. I heard that damn ball machine upstairs, bong-bong-bong, and I prayed the time would pass quickly. Indeed it did, and we were led to the PICU waiting room to talk to Dr. George. Jeff came in and told us how beautifully he did during surgery and that he came out of anesthesia smiling. Hey Jeff, if you’re reading this, I don’t think Scott and I can adequately express how much it means to us that you made every effort to get on Luke’s case. Having someone in that OR that knows and loves Luke gave us the peace we so desperately needed.
Unfortunately, just after Luke’s surgery Dr. G was paged to an ER trauma, so we talked to him after we saw Luke. Even though we didn’t get the full report until later, it was especially sweet to see our Luke. He was quiet, not crying, and just looking around. We were hopeful that this time, the pain management would be different. We got him started on morphine, visited with the anesthesia nurse practioner and all started looking hopeful. I tried nursing him a bit later and we finally figured out a system that worked.
I should explain here that spine surgery is different than other types of surgery. Luke has to be flat for 24-36 hours post-op to ensure there’s no spinal fluid leak. So, it’s likely that we won’t be able to hold him for quite some time. That also means nursing became an Olympic sport. I’ll spare you the details of how we made it work 🙂 About an hour after feeding him, the pain started and so began our walk down “horrible pain management lane”. I’m sure some of you are reading this thinking, “Um, didn’t the staff learn anything from previous surgeries about Luke’s high pain needs? Why is this happening again?”
Luke is an interesting cat. With every surgery, his pain needs are so different and he’s started developing a high immunity to what worked the time before. So, we usually start with what finally worked last time and go from there. Unless I shot a video of our afternoon and evening with Luke, it’s not really possible for me to capture the pain he was in and the frustration that we felt. When we say that Luke cried non-stop for 16 hours, we really mean it. That is NOT an exaggeration. Scott and I took shifts and prayed incessantly all night long.
At 7pm, things took a turn for the worse. Luke’s color was bad and the blood draw came back with a bad case of anemia (for our medical friends, his H&H levels went from 12 to 7). Not good. Belly was distended and firm. Double not good. The scene is never a good one when you have two surgeons (neuro and pediatric), the intensivist (doctor assigned to the PICU), two nurse practioners, the charge nurse and your day and night nurse standing at your son’s bedside trying to decide the best course of action. We have been that family before and I was less than thrilled about being that family again. It was like a freaking convention. Dr. G told us he was concerned and trust me, that is not what you like to hear from your rockstar neuro. Dr. Josephs, the on-call surgeon, ordered an NG tube up his nose to get rid of the air from “up to” and ordered an xray of his belly. The intensivist ordered a blood transfusion. Problem. Luke only had one IV and blood has to have it’s own dedicated line. The PICC team, who always starts Luke’s lines, heads out at 7pm. Double damn.
One of the nurses came in and began setting up the supplies to start an IV. That’s when I lost it. Completely and totally broke down. Scott had been at home with the kids for a bit and then was heading back to the hospital. So I was alone. And Luke was screaming. And this “Oh, not to brag on myself but I’m pretty good at putting in IV’s” nurse was telling me she could start Luke’s IV. I finally put my foot down. I begged our nurse to call PICC. And then I started praying Hail Mary’s, feverishly. Oh, and I cried 🙁 By the sheer grace of God, PICC called back and said they were on their way. When Gene (he is THE man from vascular) walked in the door, I started crying. He came over and gave me a hug and told me they would get us access. God bless that PICC team. They did get us access and we started the transfusion.
I have to tell you – there were so many God moments throughout today that I just don’t think I can capture them all. Your prayers allowed us to weather the horrible news, the setbacks and the frustration we felt.
The night went from bad to worse and by midnight, we had tried fentanyl, valium, toridol, tylenol and morphine. And, that, was day one…