Dominic/Family Update
Is it sad this is a common update now?
I've got enough RL friends between here and Facebook this is the quickest way to send out notes to everyone.
We saw the Dr. who did the Ventriculostomy. He was funny.... I really liked him. He joked that if our doctor didn't take good care of us to come see him and he'd "set him straight".... (which is super funny since our doctor is his boss....)
So...procedure is done. Like 85% chance it should be fine. The other 15% either the hole they cut could close up (rare), or if his "obstruction" get's bigger (which since the next surgery is to REMOVE the malformation....I feel good about).
If either happens, the next "fix" option is a shunt. I love/love/LOVE that they fixed this without putting any foreign materials in his head. BTW it's actually listed under hydrocephalus wiki with "alternative treatments..." ROFL cracks me up. "An alternative treatment for obstructive hydrocephalus in selected patients is the endoscopic third ventriculostomy (ETV), whereby a surgically created opening in the floor of the third ventricle allows the CSF to flow directly to the basal cisterns, thereby shortcutting any obstruction, as in aqueductal stenosis"
Bad, Dom asked the same questions he'd already asked. We talked about it, but he's SUPER guarded and doesn't want to be questioned on anything regarding his behaviors (which makes my life HELL because if he cant keep track of headaches/symptoms I HAVE to and if he isnt answering my questions or is hiding shit from me...Ian you need to beat some sense into him. Just avoid the head.)
So....well he's too damn proud. I'm not sure if it's short term memory loss, or since he'd asked the questions of the resident instead of the actual surgeon he was making sure the resident knew what he was saying when he'd given us the answers...or...if he didn't remember asking them in the first place.
Anyway, the doctor showed us the newest MRI's (which was wonderful since UCLA has been super diligent about his care, but they also aren't the best about giving us every little bit of information, which my type A personality needs ya know....) So the he walked us through he screens, which is JUST FREAKING AMAZING. Bad news, the malformation, is a lot worse. Over an inch now (from 4mm where it started) it's really pressing on the space his brain has. I can *NOT* believe he is able to function (neither can they really...they keep asking me "are you sure he doesn't have ANY stroke symptoms?"...no dude, ask him to jump and smile. Really... Just eyesight and taste. Which when you think about it, 2 out of five senses..that fucking sucks.) But it's sitting there right between
Also doctor took out the stitches, so his head is officially free of anything "extra", and other than the short hair, he looks "normal".
Another bad, he managed to bump his head not once, not twice, but yes THREE DIFFERENT TIMES. So he's had a few headaches....I'm not "jumping" yet, but if he has another headache in the next day or so (we're up to 3 now, but each of them a day when he bumped his head...so do I or don't I count it?) I'm calling UCLA for another MRI.
Mom's mastectomy is scheduled for 9th. Everything is good to go, we did some freezer cooking in single person meals this last week so she should have enough stuff to feed herself. We're going to be there Wednesday - Saturday of that week to help care for her, my dad, and see Dom's neuro for the NEXT surgery. I need a date please...to plan.... I'm dying here. This waiting shit sucks.
My food intake has been hell (can you say lots large sugary starbucks anyone?) so I'm positive I've gained weight, and those cute jeans I had JUST bought and was proud they fit, are now tight. *insert a whole ton of cussing here* And I'm having a hard time sleeping. I want to see about getting some sort of drugs (a friend of mine suggested ambien) but I need to check the nursing ramifications, and then test it out, cause I can NOT be sleeping through her needing me.
*breathing*
It's a day at a time right now...On another upside I've only had two break down crying sessions last week.
I've had a lot of people ask "where" it is. Here is a picture. So the space between the 3rd and 4th ventricle, that's where the malformation is. it's like a bunch of grapes, but instead of bursting, they are filling up with blood (think balloon) which is why he has no blood in his CSF (spinal fluid). If it actually bursted, the blood with fill up around his brain, but it might reduce pressure. It doesnt matter at an inch it's considered pretty damn bad and it pushes the surgery in favor of removal. If it was half the size (it was in October when I was 38 weeks and we had the second bleed) they wouldnt do surgery.
Anyway so they cut the other side of the 3rd ventricle, and it actually will drain out the bottom flow down and around and hit the brain stem (the two spots meet up right below the cerebral aqueduct). The aqueduct is the "overflow" space they took advantage of with the surgery two weeks ago.
*breathes* Now just for the removal.
I've got enough RL friends between here and Facebook this is the quickest way to send out notes to everyone.
We saw the Dr. who did the Ventriculostomy. He was funny.... I really liked him. He joked that if our doctor didn't take good care of us to come see him and he'd "set him straight".... (which is super funny since our doctor is his boss....)
So...procedure is done. Like 85% chance it should be fine. The other 15% either the hole they cut could close up (rare), or if his "obstruction" get's bigger (which since the next surgery is to REMOVE the malformation....I feel good about).
If either happens, the next "fix" option is a shunt. I love/love/LOVE that they fixed this without putting any foreign materials in his head. BTW it's actually listed under hydrocephalus wiki with "alternative treatments..." ROFL cracks me up. "An alternative treatment for obstructive hydrocephalus in selected patients is the endoscopic third ventriculostomy (ETV), whereby a surgically created opening in the floor of the third ventricle allows the CSF to flow directly to the basal cisterns, thereby shortcutting any obstruction, as in aqueductal stenosis"
Bad, Dom asked the same questions he'd already asked. We talked about it, but he's SUPER guarded and doesn't want to be questioned on anything regarding his behaviors (which makes my life HELL because if he cant keep track of headaches/symptoms I HAVE to and if he isnt answering my questions or is hiding shit from me...Ian you need to beat some sense into him. Just avoid the head.)
So....well he's too damn proud. I'm not sure if it's short term memory loss, or since he'd asked the questions of the resident instead of the actual surgeon he was making sure the resident knew what he was saying when he'd given us the answers...or...if he didn't remember asking them in the first place.
Anyway, the doctor showed us the newest MRI's (which was wonderful since UCLA has been super diligent about his care, but they also aren't the best about giving us every little bit of information, which my type A personality needs ya know....) So the he walked us through he screens, which is JUST FREAKING AMAZING. Bad news, the malformation, is a lot worse. Over an inch now (from 4mm where it started) it's really pressing on the space his brain has. I can *NOT* believe he is able to function (neither can they really...they keep asking me "are you sure he doesn't have ANY stroke symptoms?"...no dude, ask him to jump and smile. Really... Just eyesight and taste. Which when you think about it, 2 out of five senses..that fucking sucks.) But it's sitting there right between
Also doctor took out the stitches, so his head is officially free of anything "extra", and other than the short hair, he looks "normal".
Another bad, he managed to bump his head not once, not twice, but yes THREE DIFFERENT TIMES. So he's had a few headaches....I'm not "jumping" yet, but if he has another headache in the next day or so (we're up to 3 now, but each of them a day when he bumped his head...so do I or don't I count it?) I'm calling UCLA for another MRI.
Mom's mastectomy is scheduled for 9th. Everything is good to go, we did some freezer cooking in single person meals this last week so she should have enough stuff to feed herself. We're going to be there Wednesday - Saturday of that week to help care for her, my dad, and see Dom's neuro for the NEXT surgery. I need a date please...to plan.... I'm dying here. This waiting shit sucks.
My food intake has been hell (can you say lots large sugary starbucks anyone?) so I'm positive I've gained weight, and those cute jeans I had JUST bought and was proud they fit, are now tight. *insert a whole ton of cussing here* And I'm having a hard time sleeping. I want to see about getting some sort of drugs (a friend of mine suggested ambien) but I need to check the nursing ramifications, and then test it out, cause I can NOT be sleeping through her needing me.
*breathing*
It's a day at a time right now...On another upside I've only had two break down crying sessions last week.
I've had a lot of people ask "where" it is. Here is a picture. So the space between the 3rd and 4th ventricle, that's where the malformation is. it's like a bunch of grapes, but instead of bursting, they are filling up with blood (think balloon) which is why he has no blood in his CSF (spinal fluid). If it actually bursted, the blood with fill up around his brain, but it might reduce pressure. It doesnt matter at an inch it's considered pretty damn bad and it pushes the surgery in favor of removal. If it was half the size (it was in October when I was 38 weeks and we had the second bleed) they wouldnt do surgery.
Anyway so they cut the other side of the 3rd ventricle, and it actually will drain out the bottom flow down and around and hit the brain stem (the two spots meet up right below the cerebral aqueduct). The aqueduct is the "overflow" space they took advantage of with the surgery two weeks ago.
*breathes* Now just for the removal.