Elizabeth has been begging me since last year to have a sleep-over for her birthday, so I finally caved. I mean, how hard could it be? Seeing as how it's Monday and I'm still whining about it, you can guess the answer to that question!
It started out well enough, with some pizza and then outside to play. We waited until her best friend got her after a dance recital, then did presents, cake & ice-cream, then got them all settled in front of a Harry Potter movie. Of course, by this time my eyes were a red, itchy mess from spending a couple hours outside with my arch-nemesis tree pollen. I went to lay down while Dave kept an eye on things. By midnight, all except two girls were asleep, so he put on another movie and came to bed. Next thing I had a hovering almost-8-year-old two inches from my face. "Mrs. Kroger? The cat bit Brianna." We proceeded to lock up the cat and go back to bed.
The next excitement came at 2:30 am, when we heard Alex come downstairs. Dave put him back to bed, and I went to deal with the two girls who were STILL up. Seriously? I purposely did it on a Friday, so they'd be tired after a week of school. The girls say they're hungry and thristy, so I get them some water & fruit snacks. Conversation ensues...
Me: "So do you guys do a lot of sleepovers?"
Brianna: "Sometimes."
Me: "Do you always stay up this late?"
Brianna: "No, but mama doesn't let us have Coke before bed."
Touche, Brianna, touche! What a rookie mistake - to have Coke available at a slumber party! Live and learn - someone remind me to lock up the Coke the next time someone asks to have a sleepover...
We spent the rest of the weekend trying out our brand new Wii. We've had a blast so far, and it's a great motivator to get the kids to do their chores. I kick butt in Bowling, but alas my ability to swing a bat or tennis racket on the Wii sucks just as bad as in real life. I most like the way I can make my "Mii" all tall and skinny. So who cares if my Mii sucks at sports - at least she looks good!
Monday, April 28, 2008
Wednesday, April 23, 2008
My first post!
It should come as no surprise that my first ever blog post is about my oh-so-sweet, but ever-so- challenging middle child. I started a medical blog of sorts for him back in 2004 when he went through his first surgery, but was feeling the need for a little something more general, in case I ever felt like talking about anything else! (For those of you new to the story, feel free to check out the background at: http://www.thestatus.com/ patient:kroger pwd:zack1023) So here we are...
Unfortunately, it's his medical issues that again bring me to spill my thoughts onto paper, er screen. After sending his CT scans to Dallas, today I had an email back from THE mack-daddy of all pediatric craniofacial surgeons. After reading his initial opinions, I decided to call to make an appt, and was actually transferred back to talk to him. Live and in-person! What an awesome experience, after 4 years of this dude here with zero people skills to FINALLY talk to a surgeon that was so damn down to earth!
So we chatted...Zachary needs to get a lingering defect on his head filled - it's just too big to leave alone forever. AND he thinks that the shape in front MAY need correcting as well while he's in there. But, they have an anthropologist on staff (how cool is that!) who will take lots of measurements of his head shape to help us decide. Either way, it's a MAJOR surgery again. He confirmed that our plastic surgeon in Cincinnati should never have done the second surgery the way he did - that it was doomed to fail because of the technique used. We're hoping that info along with the fact that he's the only in-network pediatric plastic surgeon will help us get a waiver from our insurance to get the Dallas docs covered as in-network (so we'd ONLY have to pay about $2000 instead of closer to $20,000!) That's the kicker right now, and since it's not an emergency, I want to try to get the insurance issues resolved, so we get the best care possible at the best price!
The procedure we're doing is called a "split skull bone graft." Basically, they'll take a piece of bone from the back or side of his skull, slice it in half depth-wise, then put the inner portion in the hole on top of his head, and the outer portion back where they got it from. If they decide that he needs his forehead rounded out again, they'll instead take off the front of his skull, break it apart, and put it back together again. Either way, it's a lot of post-op swelling, so he'll likely have at least a couple days where he can't open his eyes (anyone want to wager a guess as to how much that will piss him off now that he's older?) The surgeon said they have good luck using just Tylenol for pain along with Atavan to sedate them so they aren't so agitated post-op. This sounds like a wonderful plan to me, as the narcotics he's had previously make him so sick that he vomits, gets dehydrated, and then we end up back in the hospital for 3 days (NOT that I'm still bitter after 2 years!) He also thinks we can use a cell-saver and recycle his own blood this time so he won't need another transfusion. Yeah! If we fill the defects only, he can probably do a scar revision to make it thinner down by his ears where it's visible, so he can finally have a shorter haircut. (Sorry, but I have to take comfort in the little things at this point.) If we do the full skull expansion, he won't do the scar revision, as it's the expansion that makes the skin stretch there so much and makes the wide scar as the swelling goes down. He also won't shave his head! (Again it's the little things...)
In our conversation, he also thinks it's possible that the plastic surgeon here used something called Bone Morphogenetic Protein (BMP) which causes bone to regrow, but is not FDA approved for use in children, though some facilities use it anyway. He thinks it may be what caused the remaining sutures to close or start closing. I requested Zachary's full file from the hospital to see if it's mentioned. I'm gonna be pissed if it was used without my knowledge. It just seems fishy to me that we had so much closing of sutures happen in the 6 months after that second surgery. Yet another reason why we're running away from Cincinnati fast.
So, how am I feeling? Well, that's a tough question to answer. One one hand, I feel productive finally that we're getting some answers for why this journey for Zachary has been so much longer than what is typical for kids with cranio. It brings me peace that we finally found a surgeon who I can have a completely honest conversation with and who I trust to help me make the right decisions for Zack. (Just hate that he's a long plane-ride away!) On the other hand, there is this nagging guilt that I should have done more research 2 years ago before the second surgery. I didn't follow my gut. I just wanted to believe that we could take the "easy" way out and have it all behind us then. And I just look at my sweet little man and wonder how's he going to handle it all at this age. He still has so many fears that we attribute to the previous surgeries, though he really doesn't seem to remember much about the surgeries themselves. I wonder if that will be true this time or if he's old enough now that it will stay with him longer-term. I know my earliest memories are from when I was four, so I suspect that he will remember this. Am I foolish to hope that he'll just remember it as his first plane ride?
Here's a self-portrait he took this week from a funky angle...what a cheeseball!
Unfortunately, it's his medical issues that again bring me to spill my thoughts onto paper, er screen. After sending his CT scans to Dallas, today I had an email back from THE mack-daddy of all pediatric craniofacial surgeons. After reading his initial opinions, I decided to call to make an appt, and was actually transferred back to talk to him. Live and in-person! What an awesome experience, after 4 years of this dude here with zero people skills to FINALLY talk to a surgeon that was so damn down to earth!
So we chatted...Zachary needs to get a lingering defect on his head filled - it's just too big to leave alone forever. AND he thinks that the shape in front MAY need correcting as well while he's in there. But, they have an anthropologist on staff (how cool is that!) who will take lots of measurements of his head shape to help us decide. Either way, it's a MAJOR surgery again. He confirmed that our plastic surgeon in Cincinnati should never have done the second surgery the way he did - that it was doomed to fail because of the technique used. We're hoping that info along with the fact that he's the only in-network pediatric plastic surgeon will help us get a waiver from our insurance to get the Dallas docs covered as in-network (so we'd ONLY have to pay about $2000 instead of closer to $20,000!) That's the kicker right now, and since it's not an emergency, I want to try to get the insurance issues resolved, so we get the best care possible at the best price!
The procedure we're doing is called a "split skull bone graft." Basically, they'll take a piece of bone from the back or side of his skull, slice it in half depth-wise, then put the inner portion in the hole on top of his head, and the outer portion back where they got it from. If they decide that he needs his forehead rounded out again, they'll instead take off the front of his skull, break it apart, and put it back together again. Either way, it's a lot of post-op swelling, so he'll likely have at least a couple days where he can't open his eyes (anyone want to wager a guess as to how much that will piss him off now that he's older?) The surgeon said they have good luck using just Tylenol for pain along with Atavan to sedate them so they aren't so agitated post-op. This sounds like a wonderful plan to me, as the narcotics he's had previously make him so sick that he vomits, gets dehydrated, and then we end up back in the hospital for 3 days (NOT that I'm still bitter after 2 years!) He also thinks we can use a cell-saver and recycle his own blood this time so he won't need another transfusion. Yeah! If we fill the defects only, he can probably do a scar revision to make it thinner down by his ears where it's visible, so he can finally have a shorter haircut. (Sorry, but I have to take comfort in the little things at this point.) If we do the full skull expansion, he won't do the scar revision, as it's the expansion that makes the skin stretch there so much and makes the wide scar as the swelling goes down. He also won't shave his head! (Again it's the little things...)
In our conversation, he also thinks it's possible that the plastic surgeon here used something called Bone Morphogenetic Protein (BMP) which causes bone to regrow, but is not FDA approved for use in children, though some facilities use it anyway. He thinks it may be what caused the remaining sutures to close or start closing. I requested Zachary's full file from the hospital to see if it's mentioned. I'm gonna be pissed if it was used without my knowledge. It just seems fishy to me that we had so much closing of sutures happen in the 6 months after that second surgery. Yet another reason why we're running away from Cincinnati fast.
So, how am I feeling? Well, that's a tough question to answer. One one hand, I feel productive finally that we're getting some answers for why this journey for Zachary has been so much longer than what is typical for kids with cranio. It brings me peace that we finally found a surgeon who I can have a completely honest conversation with and who I trust to help me make the right decisions for Zack. (Just hate that he's a long plane-ride away!) On the other hand, there is this nagging guilt that I should have done more research 2 years ago before the second surgery. I didn't follow my gut. I just wanted to believe that we could take the "easy" way out and have it all behind us then. And I just look at my sweet little man and wonder how's he going to handle it all at this age. He still has so many fears that we attribute to the previous surgeries, though he really doesn't seem to remember much about the surgeries themselves. I wonder if that will be true this time or if he's old enough now that it will stay with him longer-term. I know my earliest memories are from when I was four, so I suspect that he will remember this. Am I foolish to hope that he'll just remember it as his first plane ride?
Here's a self-portrait he took this week from a funky angle...what a cheeseball!
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