What an eventful day, I'm sure the first of many. Evey went into the ER and then to the Pediatric Intensive Care Unit(PICU) on Sunday night for more breathing spells. We were hoping once there that they would bump up her surgeries that were scheduled three weeks out. So, they got the ball rolling and the ENT and general surgeon started to coordinate to make it happen. Needless to say the General Surgeon was out of town until tomorrow and he didn't want it to happen without him, but our ENT was leaving tomorrow and he didn't feel comfortable not doing his part because her breathing was so bad. Finally after 2 days waiting in the PICU the ENT(sorry for all the medical acronyms) decided to go and do his broncoscopy down Evey's trachea to see what was going on.
Long story longer, he gets in there and she has all this extra cartilage on her larynx and behind her epiglottis that they have to start cutting out. He also lets us know that her tongue and back of her throat are really malformed and that it could be cutting off her breathing. The weird thing is, here we have these very educated experienced medical professionals asking us what we know about the syndrome from our research. So I say, "I don't know, my friend on facebook in Europe had this type of problem with their kids". It's so bizarre to have to be educating the doctors because they dont have a clue what they're dealing with and quite frankly neither do we, unless you count our facebook group of 17 people. Thank you Mark Zuckerburg!
We are sitting in our PICU room waiting for Evey to come out of surgery, tick tock, tick tock, and a half hour goes by, then another half hour and then another hour, mind you this was supposed to be a half hour surgery at the most. So that's awesome. Then the nurse comes and says hey they told me to bring in this vent machine because she's intubated but I dont really know what's going on. 15 minutes later our nurse comes in and says you're going to have to leave and go into the waiting room because it's about to get really busy in here and we'll come get you in a little. A half hour goes by in the hall and we're thinking okay, our daughter is either dying or dead. But really, you don't think about it like that. After the fact, Nate & I talked about what goes through your mind when you're waiting in the hall thinking your daughter is dying.
Spiritual stuff: We compared notes about what we both thought in the hallway, I told him I just was overwhelmed with the spirit and the fact that she's not my little girl, she's the Lords. Whenever he decides she's completed her mortal journey is completely up to him. She does amazing missionary work here and she'll do amazing missionary work across the veil and we'll be blessed by her spirit ALWAYS regardless of where she is. Nate told me he kept having the scripture John 16:33, a quote from the Savior, come to his mind, "In the world ye shall have tribulation: but be of good cheer; I have overcome the world." He had the words "I have overcome the world" repeated in his mind over and over.
Finally we get called back and they show us Eves Knees and they had to get her all situated on her vent and get everything set up for the evening. Apparently, she stopped breathing when they tried to take her off anesthesia so they had to intubate her. They're hoping she just had a hard time coming out of her anesthesia and that's what caused her to not breathe, or it could be some other reasons. She'll be intubated hopefully only until tomorrow until they pull it out. Best case scenario, it was just the swelling and anesthesia that caused her to stop breathing and everything goes fine after pulling the tube. Worst case scenario, there are bigger issues due to her malformed throat and tongue and they do a tracheotomy to help her breathe. And away we go onward and upward. All other surgeries are postponed until we (and by we I mean the medical professionals and our facebook friends) figure out what's truly behind her breathing issues.
So why the title, you ask? I've been trying to control one aspect of my life and get out of my pregnancy "stretchy" pants and have been trying to eat healthy. I haven't touched sugar in weeks. After tonight, I told Nate, I deserve some ice cream. We walked on the grass barefoot up to the University Hospital, hand in hand, and I got a Strawberry Shortcake Ice Cream Bar. (Nate has much more discipline than me and got a beef jerky stick.) I would dare say our "treats" were well earned tonight.
Until then, the church is true and the book is sometimes blue.
Last thought, promise. If you're ever having one of those parental moments where you want to kill your children or yourself - go to the temple and then to the Picu. It'll swiftly remind you of what really matters.