CMMartos
04-21-2008, 03:05 AM
Julian's story is best told on his page (click the linky at the bottom of the signature...pictures and stuff).
Here's the text version, though:
So, Monday night was awful. I barely slept, Rory kept waking up, Pablo tossed and turned. Seems like the only one of us who slept well was Julian, sweet oblivious boy. One of our coping mechanisms was to write in Sharpie, on the back of his head: “Handle With Care.”
It amused us on an otherwise awful night. We woke up at 5 am to shower and make tea, packed up a change of clothes, some blankets and the camera, and bundled Julian out of the house for his 6am pre-operative anesthesia appointment.
We didn’t get to the docs until almost 7:30 (his scheduled operative time), and then they had a hard time finding a blood-pressure cuff, hospital gown and hospital socks small enough for him.
Then he sat in our laps, and, after accepting that he was going to get no food, began burbling, cooing and smiling at us. We got it on camera.
We met the nurses who were going to care for him, signed the official paperwork allowing for his craniectomy (worst word ever!) and had the surgery and his anesthesia explained one more time. Turns out the surgeons had decided to do the surgery not by taking out small strips of bone, but by removing about a half of his skull, shaping it and quartering it outside his head, piecing it back together, and then slipping it back in over his brain. Yeah.
So, the anesthesiologst (who at this ungodly hour was freshly made up and pretty…) came and got him around 8:30, bundled him up in his nice warm blankie, and took him away.
We asked Sue, the nurse in the OR, if it was possible to take pictures of the surgery, because I knew I'd be curious later if it went well and would want whatever I could get if it didn't, and she agreed. If you want to see them they are here (http://www.angelfire.com/julianantonio/cranio/surgerysure.html).
Pabs and I sat in the cafeteria and waited. And waited. And waited. Sue, the nurse in the OR, called every hour to update (“They’re cutting now,” or “They’ve removed the piece now”) and our friend Liz came to keep us company. Around 2 or 2:30 they called to let us know he was done, & we met the surgeons again to see how it went. The first surgeon told us it had gone well, and that the only unexpected thing for him had been that Julian had lost a little more blood than they’d expected, but the transfusion had taken care of that.
The second surgeon then came out, and said that he’d been a little surprised by how “snug” Julian’s skull was. They’d thought they were doing this surgery way in advance, but it turns out he was just out of room in there (figured they had 4 more weeks before it would have compressed his brain…turns out they only had about 4 more days). The protective casing between the brain and the skull (the dura) was stretched to its limit, and had been rubbing against the inside of the skull and had rubbed through in a few places. Pablo and I both sagged against the doorframe on hearing that…but good for Julian that they caught it all in time.
Nurse Sue then told us we’d have to wait a little while before we could see him in Recovery, so she showed us his “after” picture from the OR, complete with incision. His head was perfectly round, and MUCH bigger than it had been.
Finally, they told us we could go in and see him, and Pabs and I rushed into the room. Where was my son? Turns out, the one baby in Recovery WAS Julian, even though it looked so little like him that we walked right past him.
Some of the change is swelling (which will get MUCH worse than it is now) and some was a change in head shape (his head is round, his scowly-horn is gone and his eyes are farther apart). It’s a little disconcerting.
Rory came to visit tonight, before the selling went up.
Anyway, tonight is my night at the ICU. He’s VERY drugged, sore, and, understandably, a little cranky. Thank you for all your thoughts and prayers for him, and I’ll re-update when we find out when he’s going home.
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1/24/08 Update:
So, the swelling is WAY up.
He's doing well other than that, nursing like a champ (YAY!) and they've removed all his lines except his IV, heart monitor and catheter. We had over 9 tubes and wires yesterday, so this is a plus!
He's still on morphine a few times a day and tylenol around the clock, but he's comfy and not fussy.
Bandages come off today or tomorrow. *-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
1/30/08 Update:
Tuesday night I half dozed in the ICU all night, waiting to see when I’d be able to hold him. He had heart monitors, a blood pressure cuff, an IV in his foot, two in his hand, an arterial IV, a catheter and various other tubes and wires connecting him to the bed, so it was nearly impossible for them to hand him to me. Still, I was there with him, and talking seemed to soothe him, especially as his eyes swelled shut. He slept, fitfully, and I worked on reading The Birth House (a gift from my August 2005 Mom’s group) and making Julian a hat for whenever he got discharged.
Pabs and my mom came back in the morning, we had some breakfast, and I went home to shower. Then I had to take the van in to get the hatch fixed (it refused to close AS we were arriving Tuesday morning for the surgery), and I came back to the ICU. He was swollen and puffy, and still a little drugged up. Poor baby. He did finally eat, though, downing his first meal in over 30 hours by sucking down 4oz of pumped milk and still acting a little hungry. That’s my boy. They took the IV out of his foot since he was eating, and that was that.
My cousin, Cindy, drove down from Sacramento to bring Julian and Rory the gifts she’d picked up for them on her recent trip to NYC. She bestowed my son with a monkey and a winter hat, showed Pabs and I pictures of her trip, and then went back to the house with Pablo for dinner and to give Rory her pig.
http://julianantonio.angelfire.com/0to12months/007week23.JPG
This was the first time Cindy had met Julian in person, though she’s seen lots of pictures, but I’m sure he’ll look much better the next time they meet. As per Pablo and the nurses’ recommendations, I hopped in the car and headed out to Newman Hall (my church) for my weekly meeting. It felt odd to be anywhere without Julian, since he’d been in or on my body for the last 11 months, but the change of scenery and familiar faces did me a world of good. Every week we have a prayer or meditation we’re given, and one of the group leaders had typed up one asking for Julian’s healing and strength for us. It was incredibly sweet, and it was fantastic to know how much Julian was cared for, even by people who’d never met him.
Wednesday night was much the same as Tuesday night…little sleep and lots of reading. They shuffled us around to a different bed space, and tried to “fix” the arterial line in Julian’s arm (they couldn’t get any blood out, and couldn’t detect blood pressure with it). The resident ended up getting showered in blood (arteries are under pressure, apparently), and gave up.
Thursday morning we were moved into the less-intense side of the Intensive Care Unit, where all but two of the kids had been operated on by the same doctor, in the last 2 days, so the whole ward was sporting the same awesome head-wrap of bandages. Julian was finally up to nursing, and that made us both feel much, much better, I can assure you. They’d removed one more of his IVs over the course of the night, and so he was a little bit easier to get in and out of his bed.
I also finished making his hat.
He’d only been taking in food for a day or so, but the residents were concerned about his digestive system, and mentioned that if he didn’t “go” soon they were going to have to start talking about suppositories. Bleh. Just the mention of the idea seemed to be enough for him, and my little champ filled the bed-nest they’d made for him. Once that disaster was cleaned up and the sheets were changed, they pulled out his catheter. When he started crying, a nurse (not our regular one) came and began to tease him a little bit. “Aw, that wasn’t so bad, was it?” He then, I kid you not, peed in her face. So, the bed had to be changed again.
The swelling was awful, but the morphine was letting him sleep comfortably, so I went home to sleep on Thursday night for the first time, leaving my mom at Julian’s bedside. I got home to snuggle my daughter, and found I wasn’t even going to have to cook. Kos and Elisa bought us dinner, and Elisa (and their two darling kiddos) delivered it and hung out.
Friday morning we arrived at the hospital, let my daughter snuggle Julian for a bit, and, lo and behold, his eyes were open! He'd also shrunk out of his hat!
He was obviously feeling much better, too, and had taken his last dose of morphine at midnight…and with just Tylenol hadn’t been fussy or cranky at all. They finally took out the last of his IVs (leaving just the lock on his arm for easy injections if necessary) and told us we could take the heart monitor/blood pressure cuffs off for 4 hours at a time.
For the first time in 4 days, I was able to hold my son in my arms and not have to worry about snagging some tube or setting off an alarm. It was glorious. We even got to dress him (in the clothes from Pabs' sister Sofia...perfect for the hospital since they could have the monitors on under them).
Then Dr. Sun, the surgeon, came by to check on Julian. When he started talking, Julian lifted his head to look for him. “If he can lift that big head, he’s fine,” said Sun, who then popped the bandages and steri-strip off with one hand.
Shortly after they unhooked him, Pablo’s sister, Marina, and Tidiane came to Children’s and got to hold him.
Marina is Julian’s Godmom, and we were thrilled she got to come see him in the hospital. After they left, our friend Jen (from Newman) came by, and (after some prodding) we got Liz to come, too. Liz was there when they ran Julian’s first tests back in December, and she watched Rory when we went to Julian’s big cranio appointment, so it was great for us to share the new-and-improved Julian with her.
The 5th floor pediatrician said Julian was he best-looking cranio case he’d ever seen, especially considering the fact that he’d had 4 sutures fixed instead of the usual one or two. That night both Pabs and I crashed at the ICU (we had a window seat and the nurses pretended not to notice the both of us). The next morning Armando and Ines arrived at the hospital, we all had breakfast, and the nurses took out his lock. He was free to go. We headed back to the house, took pictures, and then went to go have dinner with Uncle Bob.
So, Julian is home. He didn’t bruise from all that swelling, has been cleared to sleep however he wants (in bed with us) by his pediatrician, and is taking Tylenol 3-4x a day. That’s it. If you don’t see the incision, you’d never know anything had happened as he’s such a sweet baby, with such a perfectly round head.
Special thanks to my mom, who took off a week of her life to come up and get run ragged by Rory and sleep in uncomfortable ICU bed-chairs so that we could be with our son when he needed us and with our daughter when she missed us. This wouldn’t have been possible without her, and I wish there were more pictures of her and the kids, but she was busy cooking and stocking our freezer and entertaining Rory, and no one thought to document. I love you, Mom!
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4/16/08 Update:
Jules has since been back to both the Neuro-surgeon and the Plastic Surgeon. When we saw the Plastic Surgeon yesterday he told us Julian was perfect, and we'd get seen again in mid July. At that point we'll finally get his surgery pictures (after an explanatory slideshow).
The sweet baby has one more appointment (just a check-up echo-cardiogram) week after next, and then he's clear until July, and until December after that.
That's right, no second surgery. His ears are clear and his head is healing better than could have been hoped for.
http://julianantonio.angelfire.com/0to12months/016weekmain.JPG
You can barely see his scar at all now, after only 10 weeks!
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If you would like to talk, please feel free to email me here. I know how important it is to talk to people who understand during this really
hard time.
Here's the text version, though:
So, Monday night was awful. I barely slept, Rory kept waking up, Pablo tossed and turned. Seems like the only one of us who slept well was Julian, sweet oblivious boy. One of our coping mechanisms was to write in Sharpie, on the back of his head: “Handle With Care.”
It amused us on an otherwise awful night. We woke up at 5 am to shower and make tea, packed up a change of clothes, some blankets and the camera, and bundled Julian out of the house for his 6am pre-operative anesthesia appointment.
We didn’t get to the docs until almost 7:30 (his scheduled operative time), and then they had a hard time finding a blood-pressure cuff, hospital gown and hospital socks small enough for him.
Then he sat in our laps, and, after accepting that he was going to get no food, began burbling, cooing and smiling at us. We got it on camera.
We met the nurses who were going to care for him, signed the official paperwork allowing for his craniectomy (worst word ever!) and had the surgery and his anesthesia explained one more time. Turns out the surgeons had decided to do the surgery not by taking out small strips of bone, but by removing about a half of his skull, shaping it and quartering it outside his head, piecing it back together, and then slipping it back in over his brain. Yeah.
So, the anesthesiologst (who at this ungodly hour was freshly made up and pretty…) came and got him around 8:30, bundled him up in his nice warm blankie, and took him away.
We asked Sue, the nurse in the OR, if it was possible to take pictures of the surgery, because I knew I'd be curious later if it went well and would want whatever I could get if it didn't, and she agreed. If you want to see them they are here (http://www.angelfire.com/julianantonio/cranio/surgerysure.html).
Pabs and I sat in the cafeteria and waited. And waited. And waited. Sue, the nurse in the OR, called every hour to update (“They’re cutting now,” or “They’ve removed the piece now”) and our friend Liz came to keep us company. Around 2 or 2:30 they called to let us know he was done, & we met the surgeons again to see how it went. The first surgeon told us it had gone well, and that the only unexpected thing for him had been that Julian had lost a little more blood than they’d expected, but the transfusion had taken care of that.
The second surgeon then came out, and said that he’d been a little surprised by how “snug” Julian’s skull was. They’d thought they were doing this surgery way in advance, but it turns out he was just out of room in there (figured they had 4 more weeks before it would have compressed his brain…turns out they only had about 4 more days). The protective casing between the brain and the skull (the dura) was stretched to its limit, and had been rubbing against the inside of the skull and had rubbed through in a few places. Pablo and I both sagged against the doorframe on hearing that…but good for Julian that they caught it all in time.
Nurse Sue then told us we’d have to wait a little while before we could see him in Recovery, so she showed us his “after” picture from the OR, complete with incision. His head was perfectly round, and MUCH bigger than it had been.
Finally, they told us we could go in and see him, and Pabs and I rushed into the room. Where was my son? Turns out, the one baby in Recovery WAS Julian, even though it looked so little like him that we walked right past him.
Some of the change is swelling (which will get MUCH worse than it is now) and some was a change in head shape (his head is round, his scowly-horn is gone and his eyes are farther apart). It’s a little disconcerting.
Rory came to visit tonight, before the selling went up.
Anyway, tonight is my night at the ICU. He’s VERY drugged, sore, and, understandably, a little cranky. Thank you for all your thoughts and prayers for him, and I’ll re-update when we find out when he’s going home.
*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
1/24/08 Update:
So, the swelling is WAY up.
He's doing well other than that, nursing like a champ (YAY!) and they've removed all his lines except his IV, heart monitor and catheter. We had over 9 tubes and wires yesterday, so this is a plus!
He's still on morphine a few times a day and tylenol around the clock, but he's comfy and not fussy.
Bandages come off today or tomorrow. *-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
1/30/08 Update:
Tuesday night I half dozed in the ICU all night, waiting to see when I’d be able to hold him. He had heart monitors, a blood pressure cuff, an IV in his foot, two in his hand, an arterial IV, a catheter and various other tubes and wires connecting him to the bed, so it was nearly impossible for them to hand him to me. Still, I was there with him, and talking seemed to soothe him, especially as his eyes swelled shut. He slept, fitfully, and I worked on reading The Birth House (a gift from my August 2005 Mom’s group) and making Julian a hat for whenever he got discharged.
Pabs and my mom came back in the morning, we had some breakfast, and I went home to shower. Then I had to take the van in to get the hatch fixed (it refused to close AS we were arriving Tuesday morning for the surgery), and I came back to the ICU. He was swollen and puffy, and still a little drugged up. Poor baby. He did finally eat, though, downing his first meal in over 30 hours by sucking down 4oz of pumped milk and still acting a little hungry. That’s my boy. They took the IV out of his foot since he was eating, and that was that.
My cousin, Cindy, drove down from Sacramento to bring Julian and Rory the gifts she’d picked up for them on her recent trip to NYC. She bestowed my son with a monkey and a winter hat, showed Pabs and I pictures of her trip, and then went back to the house with Pablo for dinner and to give Rory her pig.
http://julianantonio.angelfire.com/0to12months/007week23.JPG
This was the first time Cindy had met Julian in person, though she’s seen lots of pictures, but I’m sure he’ll look much better the next time they meet. As per Pablo and the nurses’ recommendations, I hopped in the car and headed out to Newman Hall (my church) for my weekly meeting. It felt odd to be anywhere without Julian, since he’d been in or on my body for the last 11 months, but the change of scenery and familiar faces did me a world of good. Every week we have a prayer or meditation we’re given, and one of the group leaders had typed up one asking for Julian’s healing and strength for us. It was incredibly sweet, and it was fantastic to know how much Julian was cared for, even by people who’d never met him.
Wednesday night was much the same as Tuesday night…little sleep and lots of reading. They shuffled us around to a different bed space, and tried to “fix” the arterial line in Julian’s arm (they couldn’t get any blood out, and couldn’t detect blood pressure with it). The resident ended up getting showered in blood (arteries are under pressure, apparently), and gave up.
Thursday morning we were moved into the less-intense side of the Intensive Care Unit, where all but two of the kids had been operated on by the same doctor, in the last 2 days, so the whole ward was sporting the same awesome head-wrap of bandages. Julian was finally up to nursing, and that made us both feel much, much better, I can assure you. They’d removed one more of his IVs over the course of the night, and so he was a little bit easier to get in and out of his bed.
I also finished making his hat.
He’d only been taking in food for a day or so, but the residents were concerned about his digestive system, and mentioned that if he didn’t “go” soon they were going to have to start talking about suppositories. Bleh. Just the mention of the idea seemed to be enough for him, and my little champ filled the bed-nest they’d made for him. Once that disaster was cleaned up and the sheets were changed, they pulled out his catheter. When he started crying, a nurse (not our regular one) came and began to tease him a little bit. “Aw, that wasn’t so bad, was it?” He then, I kid you not, peed in her face. So, the bed had to be changed again.
The swelling was awful, but the morphine was letting him sleep comfortably, so I went home to sleep on Thursday night for the first time, leaving my mom at Julian’s bedside. I got home to snuggle my daughter, and found I wasn’t even going to have to cook. Kos and Elisa bought us dinner, and Elisa (and their two darling kiddos) delivered it and hung out.
Friday morning we arrived at the hospital, let my daughter snuggle Julian for a bit, and, lo and behold, his eyes were open! He'd also shrunk out of his hat!
He was obviously feeling much better, too, and had taken his last dose of morphine at midnight…and with just Tylenol hadn’t been fussy or cranky at all. They finally took out the last of his IVs (leaving just the lock on his arm for easy injections if necessary) and told us we could take the heart monitor/blood pressure cuffs off for 4 hours at a time.
For the first time in 4 days, I was able to hold my son in my arms and not have to worry about snagging some tube or setting off an alarm. It was glorious. We even got to dress him (in the clothes from Pabs' sister Sofia...perfect for the hospital since they could have the monitors on under them).
Then Dr. Sun, the surgeon, came by to check on Julian. When he started talking, Julian lifted his head to look for him. “If he can lift that big head, he’s fine,” said Sun, who then popped the bandages and steri-strip off with one hand.
Shortly after they unhooked him, Pablo’s sister, Marina, and Tidiane came to Children’s and got to hold him.
Marina is Julian’s Godmom, and we were thrilled she got to come see him in the hospital. After they left, our friend Jen (from Newman) came by, and (after some prodding) we got Liz to come, too. Liz was there when they ran Julian’s first tests back in December, and she watched Rory when we went to Julian’s big cranio appointment, so it was great for us to share the new-and-improved Julian with her.
The 5th floor pediatrician said Julian was he best-looking cranio case he’d ever seen, especially considering the fact that he’d had 4 sutures fixed instead of the usual one or two. That night both Pabs and I crashed at the ICU (we had a window seat and the nurses pretended not to notice the both of us). The next morning Armando and Ines arrived at the hospital, we all had breakfast, and the nurses took out his lock. He was free to go. We headed back to the house, took pictures, and then went to go have dinner with Uncle Bob.
So, Julian is home. He didn’t bruise from all that swelling, has been cleared to sleep however he wants (in bed with us) by his pediatrician, and is taking Tylenol 3-4x a day. That’s it. If you don’t see the incision, you’d never know anything had happened as he’s such a sweet baby, with such a perfectly round head.
Special thanks to my mom, who took off a week of her life to come up and get run ragged by Rory and sleep in uncomfortable ICU bed-chairs so that we could be with our son when he needed us and with our daughter when she missed us. This wouldn’t have been possible without her, and I wish there were more pictures of her and the kids, but she was busy cooking and stocking our freezer and entertaining Rory, and no one thought to document. I love you, Mom!
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4/16/08 Update:
Jules has since been back to both the Neuro-surgeon and the Plastic Surgeon. When we saw the Plastic Surgeon yesterday he told us Julian was perfect, and we'd get seen again in mid July. At that point we'll finally get his surgery pictures (after an explanatory slideshow).
The sweet baby has one more appointment (just a check-up echo-cardiogram) week after next, and then he's clear until July, and until December after that.
That's right, no second surgery. His ears are clear and his head is healing better than could have been hoped for.
http://julianantonio.angelfire.com/0to12months/016weekmain.JPG
You can barely see his scar at all now, after only 10 weeks!
*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
If you would like to talk, please feel free to email me here. I know how important it is to talk to people who understand during this really
hard time.