Received a letter in the mail today from Julia's cranio facial surgeon. Excerpt below...
This [surgery] had in fact been scheduled but she acquired a significant upper respiratory infection that prevented us from proceeding with surgery on April 15th; the associated risks for proceeding with her surgery were too great.
She has been rescheduled for June 7th, and we are hopeful she will have made a full recovery by then. [...] Our understanding is that Julia is clinically improving, but remains at risk for reinfection. It is particularly critical in her case that we are able to proceed with surgery, as long term outcomes are related to the age at the time of the procedure, and the window is closing in Julia's case. It is therefore important that she remains healthy, and that all measures to insure not only her health but those of the children she encounters are maintained with the highest possible standards.
Yeah, that's why I'm crazy.
Tuesday, April 30, 2013
Sunday, April 28, 2013
New Surgery Date
Long overdue post, apologies. As many of you already know, Julia's surgery has been rescheduled for June 7th. The surgeons feel it's very important to hit this surgical date as it's towards the end of the ideal range to complete surgery, when her skull bones will regrow quickly to fill in the gaps created by the jigsaw puzzle they create. So June 7th we'll try our hardest to hit! Less than 6 weeks away from today. Why is six weeks such an important milestone? Because according to anesthesia, Julia must be 100% healthy for 6 weeks prior to surgery. That's why our last surgical date was cancelled, a respiratory infection. Since anesthesia doctors are the ones that make the rules on whether she's healthy enough to be put under for the surgery, this six weeks is pretty important. And, not to be negative, but she hasn't managed it at any point in the last 4 months. But, as we all know, May is a better time of year than March and April, so fingers crossed! As of today, Julia is healthy. All we have to do is keep her that way for the next 41 days, and then, oh yeah, the actual surgery and recovery time.
So we've changed a few things which should hopefully keep her healthy. First, we're moving both of the kids to an in-home setting with a wonderful stay-at-home mom of a two year old. Hopefully a break from all the daycare germs will make ALL our lives easier. This winter was truly terrible for this household with a sickness in the house at least once a week from January through mid-April. Jonah started coughing yesterday but I'm refusing to believe we're starting all over again after being healthy for the last week or so.
Second, we're planning to stay at home every weekend in May. After all, less exposure to germs means less chance of getting sick in theory. Five weekends shouldn't be so terrible, right? Except there are some really TRULY wonderful things going on in May. We had to regretfully RSVP no to two weddings, a birthday party, a baptism, Mother's Day, seeing my grandparents from Nevada who only come once a year, AJ's birthday, our annual Memorial Day party we host each year and I can't even remember what else. May was chock full of fun! Of course, if the weather holds we'll still have lots of fun just the four of us in our back yard. If the weather doesn't cooperate we may go stir crazy but we'll make it.
Last, I'm taking out stock in Clorox. Just kidding!!! But I am liable to be pretty germ-a-phobic over the next month and a half, just bear with me OK?
So that's the deal, if you don't see us for a while know that we're not ignoring you and you're not the only one. We're still having Jonah's small birthday party next weekend, then it's inside for 5 weeks prior to surgery. T-minus 41 days, but who's counting?!?
So we've changed a few things which should hopefully keep her healthy. First, we're moving both of the kids to an in-home setting with a wonderful stay-at-home mom of a two year old. Hopefully a break from all the daycare germs will make ALL our lives easier. This winter was truly terrible for this household with a sickness in the house at least once a week from January through mid-April. Jonah started coughing yesterday but I'm refusing to believe we're starting all over again after being healthy for the last week or so.
Second, we're planning to stay at home every weekend in May. After all, less exposure to germs means less chance of getting sick in theory. Five weekends shouldn't be so terrible, right? Except there are some really TRULY wonderful things going on in May. We had to regretfully RSVP no to two weddings, a birthday party, a baptism, Mother's Day, seeing my grandparents from Nevada who only come once a year, AJ's birthday, our annual Memorial Day party we host each year and I can't even remember what else. May was chock full of fun! Of course, if the weather holds we'll still have lots of fun just the four of us in our back yard. If the weather doesn't cooperate we may go stir crazy but we'll make it.
Last, I'm taking out stock in Clorox. Just kidding!!! But I am liable to be pretty germ-a-phobic over the next month and a half, just bear with me OK?
So that's the deal, if you don't see us for a while know that we're not ignoring you and you're not the only one. We're still having Jonah's small birthday party next weekend, then it's inside for 5 weeks prior to surgery. T-minus 41 days, but who's counting?!?
Sunday, April 7, 2013
Surgery Postponed and Neurosurgeon Appointment
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 :)
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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