these pics and more available here:
http://picasaweb.google.com/tiff.glassman/Halloween1?authkey=EKGV7y-Ag3A#
Friday, October 31, 2008
Happy Halloween! I'm a fishie!
these pics and more available here:
http://picasaweb.google.com/tiff.glassman/Halloween1?authkey=EKGV7y-Ag3A#
Friday, October 24, 2008
Saturday, October 11, 2008
My hero -- part two
Photos here. Videos after we edit them.
* * *
So it's been way too long since I posted the end to this story. Suffice to say that Naomi is still my hero...
So we take Naomi to see Dr. Atkinson, who apparently has a better tech than Dr. W does. She was a cardiologist in her native China. And she sees in Naomi a coarctation of the aorta. Basically, the aorta comes up out of the heart, feeds the head and right arm, then the left arm and lungs I guess, then makes an arch as it feeds the lower half of the body. In a coarctation, that arch is blocked off, meaning less blood gets to the lower half of the body. When that happens, the kidneys tell the heart, hey, I'm not getting enough blood here, raise the pressure. So the heart works harder, but then the blood pressure in the upper half of the body gets to be way too high. This is dangerous and must be repaired surgically.
This is all mitigated somewhat by the fact that Naomi's patent ductus is still open. That usually closes either in utero or shortly after birth (I forget which is correct) and feeds blood to the lower half of the body until it closes. Naomi's being still open wasn't a good thing, but it had the benefit of getting more blood to the lower half of her body and keeping her out of -- brace yourself for two scary words -- heart failure. But the PDA can close at any time and if it does, that's very very bad.
Naturally, that news freaks the freak out of us. We go back the next week to confirm the diagnosis (Naomi had been squirmy during the echo), and get a second opinion, all confirming the same thing. She needs surgery, preferably before her first birthday.
Time to talk to the surgeon. Dr. Brian Reemtsen is the man. He seems like a nice guy. He says that if it's up to him, he'd like to just get the surgery over with -- no reason to wait. We kinda see it his way and schedule the surgery.
So it's late July and we wake up verrrrrrrrrrrrrrrrrry early to get to the hospital at 4:45 for her 7:30am surgery. Dr. Reemtsen says it'll be a quick surgery, ninety minutes to two hours. Naomi is up all morning and very cranky. We try to calm her, but we're freaked ourselves. Finally the docs give her a little sedative, which calms her. As they wheel her down the hall, she looks at us, projecting calm. Sure, it was drug-induced, but hey, I'll take what I can get.
And Tiffany and I go get breakfast. Two hours later, Dr. Reemtsen comes down and finds us. Surgery went perfectly, he said.
Wanna know how good Dr. Reemtsen is? Check this out. The surgery involved clamping the two ends of Naomi's aorta around the coarctation, cutting it out, and sewing the two larger halves together. Keeping the clamp on too long can lead to bad things -- I'll spare you the scary word this time. Dr. Reemtsen said that the Society of Big Wigs That Recommend Things recommend keeping the clamps on for 40 minutes or less (and obviously the less the better)... and Dr. Reemtsen told us in the pre-op meeting that he shoots for 20 minutes or less. So cut to after the surgery. How long were the clamps on, I asked? 7 minutes. That means, if I understand things correctly, that he clamped her aorta, cut out the coarctation (which is just a millimeter or two!), sewed the two ends together, and unclamped, in less time than it took me to decide what I would eat for breakfast.
We went up to the cardiothoracic ICU to see Naomi, and I won't lie, she didn't look so good. Had a bunch of IVs in her, a chest tube draining fluid, and a breathing tube down her throat. But slowly, over the next 24 hours, these would be removed one by one. (She would also be moved to the much less friendly pediatric ICU. BIG PROPS to the cardiothoracic nurses at UCLA, who were awesome, and a big urging to the peds nurses to get it together.)
Wanna know when we knew everything would be OK? 36 hours after the surgery. All of Naomi's IVs were out at this point except for the central line in her neck. Naomi wanted to crawl around -- she was still learning to crawl at that point -- and was trying to get around her hospital bed, but was restricted by the IV. Finally she gave up. She sat up in the bed and looked at me with a look that said for all the world, "Daddy, can you do something about this thing in my neck? It's cramping my style." Our daughter, the friendly kid with the sunny attitude and the huge grin, was back. She was released to go home the next morning.
We kept her on Tylenol for the next few days, but after that, she didn't really seem to be in pain. The doctors did keep her on some blood pressure medication for about a month -- the kidneys had to get used to the new pressure they were getting -- and that was a pain in the butt because she had to have it three times daily, which meant before daycare, after daycare, and (ugh) 1 am. But that was only a month.
Meanwhile, Naomi learned to crawl, cruise, and sleep through the night, which has been amazing. And now she's even learning to walk -- she can walk behind a push toy or holding onto the stroller.
The doctors say there's nothing that Naomi can't do. She's just like any other kid now, only with a sexy two-inch scar on her back. One doc even said, "She's not a heart patient anymore," which was music to my ears.
* * *
So it's been way too long since I posted the end to this story. Suffice to say that Naomi is still my hero...
So we take Naomi to see Dr. Atkinson, who apparently has a better tech than Dr. W does. She was a cardiologist in her native China. And she sees in Naomi a coarctation of the aorta. Basically, the aorta comes up out of the heart, feeds the head and right arm, then the left arm and lungs I guess, then makes an arch as it feeds the lower half of the body. In a coarctation, that arch is blocked off, meaning less blood gets to the lower half of the body. When that happens, the kidneys tell the heart, hey, I'm not getting enough blood here, raise the pressure. So the heart works harder, but then the blood pressure in the upper half of the body gets to be way too high. This is dangerous and must be repaired surgically.
This is all mitigated somewhat by the fact that Naomi's patent ductus is still open. That usually closes either in utero or shortly after birth (I forget which is correct) and feeds blood to the lower half of the body until it closes. Naomi's being still open wasn't a good thing, but it had the benefit of getting more blood to the lower half of her body and keeping her out of -- brace yourself for two scary words -- heart failure. But the PDA can close at any time and if it does, that's very very bad.
Naturally, that news freaks the freak out of us. We go back the next week to confirm the diagnosis (Naomi had been squirmy during the echo), and get a second opinion, all confirming the same thing. She needs surgery, preferably before her first birthday.
Time to talk to the surgeon. Dr. Brian Reemtsen is the man. He seems like a nice guy. He says that if it's up to him, he'd like to just get the surgery over with -- no reason to wait. We kinda see it his way and schedule the surgery.
So it's late July and we wake up verrrrrrrrrrrrrrrrrry early to get to the hospital at 4:45 for her 7:30am surgery. Dr. Reemtsen says it'll be a quick surgery, ninety minutes to two hours. Naomi is up all morning and very cranky. We try to calm her, but we're freaked ourselves. Finally the docs give her a little sedative, which calms her. As they wheel her down the hall, she looks at us, projecting calm. Sure, it was drug-induced, but hey, I'll take what I can get.
And Tiffany and I go get breakfast. Two hours later, Dr. Reemtsen comes down and finds us. Surgery went perfectly, he said.
Wanna know how good Dr. Reemtsen is? Check this out. The surgery involved clamping the two ends of Naomi's aorta around the coarctation, cutting it out, and sewing the two larger halves together. Keeping the clamp on too long can lead to bad things -- I'll spare you the scary word this time. Dr. Reemtsen said that the Society of Big Wigs That Recommend Things recommend keeping the clamps on for 40 minutes or less (and obviously the less the better)... and Dr. Reemtsen told us in the pre-op meeting that he shoots for 20 minutes or less. So cut to after the surgery. How long were the clamps on, I asked? 7 minutes. That means, if I understand things correctly, that he clamped her aorta, cut out the coarctation (which is just a millimeter or two!), sewed the two ends together, and unclamped, in less time than it took me to decide what I would eat for breakfast.
We went up to the cardiothoracic ICU to see Naomi, and I won't lie, she didn't look so good. Had a bunch of IVs in her, a chest tube draining fluid, and a breathing tube down her throat. But slowly, over the next 24 hours, these would be removed one by one. (She would also be moved to the much less friendly pediatric ICU. BIG PROPS to the cardiothoracic nurses at UCLA, who were awesome, and a big urging to the peds nurses to get it together.)
Wanna know when we knew everything would be OK? 36 hours after the surgery. All of Naomi's IVs were out at this point except for the central line in her neck. Naomi wanted to crawl around -- she was still learning to crawl at that point -- and was trying to get around her hospital bed, but was restricted by the IV. Finally she gave up. She sat up in the bed and looked at me with a look that said for all the world, "Daddy, can you do something about this thing in my neck? It's cramping my style." Our daughter, the friendly kid with the sunny attitude and the huge grin, was back. She was released to go home the next morning.
We kept her on Tylenol for the next few days, but after that, she didn't really seem to be in pain. The doctors did keep her on some blood pressure medication for about a month -- the kidneys had to get used to the new pressure they were getting -- and that was a pain in the butt because she had to have it three times daily, which meant before daycare, after daycare, and (ugh) 1 am. But that was only a month.
Meanwhile, Naomi learned to crawl, cruise, and sleep through the night, which has been amazing. And now she's even learning to walk -- she can walk behind a push toy or holding onto the stroller.
The doctors say there's nothing that Naomi can't do. She's just like any other kid now, only with a sexy two-inch scar on her back. One doc even said, "She's not a heart patient anymore," which was music to my ears.
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