Wish I had better news to share but with Julia's coughing/wheezing the anesthesia team wants to postpone surgery for 4-6 weeks. They're the ones that make these sorts of calls so the cranio-facial and neuro surgeons are looking at new dates that coincide and they can find an open operating room. I haven't heard back yet but when I do I'll let you know. In the meantime, we need Julia to get well and stay well! Not incredibly easy this time of year and in a daycare center. One of the very few times I wish we had a stay at home parent in this household. It's hard knowing we have to wait again and the weeks and weekends we cleared with work and friends/family that are helping has to be cancelled for a yet-to-be determined future date. And then try try try to keep ALL sickness away as even a cold is apparently too much to operate with. Well that should make for a fun 4th birthday party for big brother and spring for the rest of us. But it will be OK in the end, Dr. Jensen assures us that the ultimate outcome will not be compromised by waiting.
The other appointment on Friday was to meet with the neuro surgeon, which we did (Dr. Lew) and he was very friendly and approachable. He's been doing surgeries with Dr. Jensen for 8 years and I actually was fortunate enough to correspond by email with a former patient who's now 3 years old and beautiful. Her name is Julia if you can believe it! Dr. Jensen also attended our appointment with Dr. Lew as a way for us to get a chance to see him again before surgery, which we thought was very kind.
Dr. Lew answered nearly all the questions I had before even asking if we had any questions so I didn't really have too much to add. He showed us Julia's CAT scan results and went through all the risk factors. He said the brain itself looks normal and as this isn't actually 'brain surgery' and is rather 'skull surgery' he doesn't anticipate that changing. He will be doing all the cutting as it's considered best practice, but Dr. Jensen (cranio surgeon) tells him where he wants the cuts and does all the rearranging/reshaping/putting back together. Dr. Lew will stay in the hospital in case he's needed but his part is actually complete once the cutting is done. He went through the surgery which I already knew and explained in my last post.
One of my major questions he addressed right up front, risk factors. He categorized the risks as major and minor. Major being anything that is permanent and minor being things that can really suck at the time but are temporary. The two major concerns are death and damage to her brain from a stroke. He said he has never seen either result from this surgery. They are not without risk, chances range from 1 in 50,000 to 1-2% but he does not anticipate it being an outcome here. The worst minor outcome would be an infection, he said its a hellish week and could result in another surgery, but they always clear and to put it in perspective when she's 5 years old, the infection won't have changed anything. He said they also haven't had this happen but admits it's likely they've been lucky so far and typical risk is somewhere around 5%. Another 'minor' risk factor is that her head decides to take on this same
shape again, in which case they'd have to either accept it (if it was
cosmetic only and acceptable) or redo the whole surgery. He said some
kids just have a tendency towards this head shape, in which case doing
the surgery gets them back into the center of the road where they're
supposed to be but if they've got the steering wheel turned it's still
going to slowly veer off from normal again. A slightly more common minor risk factor would be the plates in her head not completely rejoining together and there being some "holes" that don't ever close up. Dr. Jensen had told us he would monitor her until she's about 5 years old and if they are still larger than is safe, at that point he'd go in and patch them up. He was hesitant to quote a number on this as he said it's improving each year and since they don't patch until the kids are significantly older the 5 year olds now rates are 90%+ of not needing this now with better than that in years to come.
Other than that, all the questions were much less intense. For instance, are they going to shave her head (yes, yes, I know my kiddos tend to be nearly bald anyways, but we want to hang on to what they have! :) No, Dr. Jensen just shaves a small strip where he'll do the incision. For after-care, do we wash her hair or bathe her or....? Yes, by the time we're home from the hospital we should be cleared for regular baths, etc. How scared should I be to let her big brother 'play' with her or let her crawl around? His answer was that we should be able to mostly let things get back to normal. Of course I don't believe this and can't comprehend it right now, but it was comforting to hear. And last question, will she have any restrictions later on in life... are you OK with her becoming a pro football player? Yes, he says, fine by him. I'm not OK with it as the mom, but I wanted to hear the neurosurgeon's view :)
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