At 7:30 am I woke up to Julie talking to Kathy Loring up at the UofU CF Clinic about coming in that day. Julie got off the phone and said, "I have PFT's at 9:30 and they're going to see me in clinic at 10:00." This is pretty typical for us when Julie gets sick...well she's always sick, so when her O2 dependence has gone up so much that she knows she needs to go in for a "clean out." "Can you get work off?" Julie asked me reluctantly. I told her I had a lunch, but I would see what I could do. "They might talk to me about transplant; I'm seeing Dr. Liou (pronounced 'Lil') today." Her question I realized was a command from a spouse. We both started getting ready. Jack and Ben were in there room talking, and jumping in their beds full of piss and vinegar...literally, and figuratively! Since the boys were content in their mess presumably, I called my lunch appt, and rescheduled. I sent a text to one of our babysitters to see if she was available short notice...she wasn't. I knew I could call our boys' literal god-mother, Aly. She reacted just like I thought she would; more than willing and as if she had nothing to do. It seems as though every time we are in this awkward situation, we are delivered tender mercies like that almost without much effort. After I took care of that and entered the twins room, it was clear that no matter what the time constraint was, we needed to get them showered. I stripped them down and placed them in the shower. I walked through the office to find Julie online shopping for our neice's christmas presents! In light of her not being able to breath all night, pleurisy and trying to sleep on BiPAP, Julie's #2 concern was getting those girls what she wanted to get them before it sold out! Classic. She probably had a sleepless night thinking more about how she found the perfect gift and didn't want to miss it than her struggle to breathe through a straw! After I got her off the computer, she proceeded to tell me "I need you to access my port before we go." Was she kidding?! It's 8:15, the boys are in the shower, they need to eat, and we need a minimum of an hour to get to Aly's and back to the U by 9:30! I tried to suggest she just go and I would catch up with her...didn't happen.
We were finally out the door at 9:05. On the way out I called Aly back. She got inpatient and ran some errands and was worried we were at her house. "Oh no, I am up on I-80, you are fine. Do you have a banana by chance? I fed the boys a handful of Honey nut Cheerios." She suggested she could go to the store and pick some up. A half hour later we pulled up to her house to find out she was in Smiths finding that bananas weren't the only thing on sale. One thing about Hendrickson women that will never change, is if something is on sale, time stops! The other side of it that I relate to is we tend to try and cram everything in to a little time frame and set up unrealistic expectations...I do this on a daily basis. Aly showed up a few minutes later and I dropped the boys off. As I walked up to the house with Jack and then Ben in my arm, both of them independently looked back at Julie. Initially when we were waiting at the front door for Aly to arrive, they looked back at the car for some re-assurance from their mother. Ben then decided to throw Aly's fake pumkins off the porch. The bouncing action of the first one just reinforced him throwing the second one! I cant wait to raise hell with these guys!
At 10:10 we were walking into the Pulmonary lab for PFT's. Julie's FEV1 was 22% of predicted value. Someone her age, her weight, with perfect lungs would be around 95-100% Her lowest was 21 two hospital stays ago (3 months ago). After visiting with the Theresa the lead RT, Jen the CF Coordinator, and then Dr. Liou, we knew this wasn't just another hospital stay. Dr. Liou is the Director of the CF Clinic and a rigorous researcher in Cystic Fibrosis. By his colleague's accounts, he wrote one of the top 10 papers on CF and research. Predictive 5-Year Survivorship Model of Cystic Fibrosis
He told us that Julie, according to the model, is at a crossroads in her therapy for her disease because she needs to start thinking about transplant. There is a lot to cover here, so I will wait till I can sit down again to write about this. I will follow up with, that afternoon was one to never forget. One where you are numb to what they are saying, but soaking up every word. I thought, 'this is what it's like; to be told by a medical expert how long you statistically have to live; this is what it's like to be told that you/or your spouse has a terminal illness like cancer. It was surreal, and still is. Julie and I went out to lunch at PF Changs to eat are way into oblivion...her dad showed up. It was a somber discussion, and continues to be just that. We don't want to jump the gun, but with lungs we don't want to wait too long either to where she is too sick to survive the surgery. There are a myriad of questions and its really about managing/weighing the risks. Ultimately, only Julie knows what she will do, and according to her Father's priesthood blessing that evening, what she decides, is the Lords will.
He has been very near to us, along with her brother James. She's definitely not alone in this. The promises allotted to her are very definitive, and very uplifting. God will deliver, He always does...especially to this girl.