Friday, June 8, 2012

You zig, I'll zag

I didn't mention specifically before, but Aida's numbers on Sunday were the highest they've been since I can remember.  Odd, since she had so much else going on. Anyway, the numbers had dropped some on Tuesday and Wednesday but were still reasonably good.  We were scheduled for surgery on Wednesday at 1030a which meant Aida couldn't eat after 4a. Restricting a BABY on STEROIDS is just not fun...especially since we'd just done it two days before. At any rate, as I was feeding her for the last time at 330a, I began to have second thoughts about surgery altogether. I really wasn't sure about whether I thought something bad was going to happen, or if we were just supposed to cancel "in obedience." I must say, that kind of obedience feels like stupidity. It was one of those rare times that I felt like I was having a conversation with God..meaning, every third thought was, "Am I making this up? I'm making this up. Wait, am I making this up?" I prayed for some sort of confirmation but like a dummy, wasn't specific. ;) I didn't want to "limit" God in that way...but were we limiting God's opportunity to heal her by having surgery? Still, God allows doctors and medicine to be the answer all the time, right?

I'm not one to over-spiritualize things (or sometimes even regular-spiritualize), but this one had me thrown. I should also note that even considering canceling a surgery because a possible conversation with God (or perhaps just exhaustion?) felt ridiculous, even potentially embarrassing. I can't imagine a scenario when I would suggest to anyone else that this would be a good idea. She was to have two large tumors removed, one of which impedes her head movement. Just to be clear, this surgery was not "necessary" in a life/death sort of way, but we definitely want them gone. The last thing we want is to pile on developmental delays. Still, I'd never been "all in" on this surgery for some reason, and now I was just plain not at peace.  I wasn't looking forward to talking to Mark about these new questions because unless he'd had a night like me, he'd not be on the same page. That is to say, we were on the same page the day before. 

Wednesday morning Aida's platelets - those that had been crazy high three days ago - had inexplicably plummeted.  That was pretty discouraging...but perhaps that was the confirmation? If only I'd asked God to have someone sing "Polly Wolly Doodle" upon entering the room so I could be sure. But honestly,  I was sure. And scared. I texted Mark to tell him about the platelets and that I was having second thoughts. I was praying he'd have had a dream or something. He had not. After he arrived at the hospital, we decided we would not have the second tumor removed because of the risk of later issues and possible need for reconstructive surgery. Again, neither of these tumors HAD to be removed...at least not right now. I felt a bit better with that decision and had agreed that if the doctors were comfortable with surgery, we'd go through with it. Mark, who still did not share my doubts, was praying that if she wasn't supposed to have surgery that it just wouldn't happen. I was worried about whether God would allow the decision to be made for us. Did I have the faith - and the gumption - to say "no" if the surgeons (and even Mark) said "yes?" Was I even supposed to?

When her fibrinogen level finally came back, we were furthered discouraged.  It too had nosedived overnight. The doctors were as stunned as us and had no explanation. The decision was made to give her products and reevaluate. The surgeon was able to wait, so we would too. This meant Aida would go even longer without food....and one of us had to be holding for HOURS. I was exhausted, losing patience and beginning have trouble controlling my frustration. (Sorry, nurses.) I left for a bit, and shortly after I returned the new counts had come in. We'd seen the numbers minutes online before the surgeon came in to tell us. Her platelets were even lower than before they gave her the transfusion. There would be no surgery that day. I was half relieved and half concerned about the returning problem with numbers. 

Meanwhile, blood cultures had come back negative, so at least some types of infection had been ruled out. A spinal tap to rule out meningitis for sure is too dangerous on patients with brain tumors, so she is continuing a 14 day round of antibiotics. Yay!  More drugs! Of course, it's definitely better to be safe in this area. Nobody seems to have a real explanation for the fever, vomiting and enlarged fontanel that had brought us there in the first place. Her numbers began improving again, and we were discharged on Thursday afternoon (yesterday) just in time for Mark to pick his parents up from the airport. :) We returned to clinic today where again, her numbers were good. Hmmmmm. The doctors are convinced that a strong steroid (a different one) prescribed by the neurosurgeons was to blame for the drop in numbers. It really doesn't matter to me. As much as I want these tumors gone, I believe that TODAY we are exactly where we are supposed to be...as not-so-fun as that place may be. To say the least, this week did not go as we planned, but in my experience, God often moves a little less "as you wish" and a little more "See, I'm still here. I've still got this."

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