There is nothing in the world like being home. :)
Friday, September 30, 2011
Just A Little Bit Longer
We're just waiting on the neuro team to get here and release him...guess I better get to packing!!
He still hurts, but it's not fluid headaches, it's just a lot of pain from all the surgical sites and muscle spasms he keeps getting in his stomach which they say is normal when you've had surgery in the same spot over and over. It's like a charlie horse in the belly.
It is gonna be GREAT to get home. :)
He still hurts, but it's not fluid headaches, it's just a lot of pain from all the surgical sites and muscle spasms he keeps getting in his stomach which they say is normal when you've had surgery in the same spot over and over. It's like a charlie horse in the belly.
It is gonna be GREAT to get home. :)
Thursday, September 29, 2011
Not Today
He had a pretty rough night, so unless things change dramatically this morning and we can get a control on the pain {he had a bad reaction to the codeine in his tylenol last night} it looks like we will not be going home today.
Hopefully tomorrow. :)
Hopefully tomorrow. :)
Wednesday, September 28, 2011
The New Shunt Is In!!
Surgery is done...it went GREAT! He had two surgeons working on him, one from the belly and one from the head,the both met in the middle so it was fast. If he is feeling up to it we could go home tomorrow!!!
Surgery Today
Kody's shunt surgery should be around noon. They are capping off his drainage around ten to force his ventricles bigger which gives him headaches but in order for surgery to go safer it has to be that way. :(
I'll update as often as I can, it should take 2-3 hours.
Thank you everyone for always being there for us. :)
I'll update as often as I can, it should take 2-3 hours.
Thank you everyone for always being there for us. :)
Tuesday, September 27, 2011
One Step Closer...
ID is testing CFS {brain juice} today, everyone here including me have positive thoughts it will turn up just fine and we can move forward to surgery in the morning. One step closer to getting HOME!! :)
These are from two days ago when Kolin came to visit and definitely cheer us both up.:)
TTYL....have a great day all!!
These are from two days ago when Kolin came to visit and definitely cheer us both up.:)
TTYL....have a great day all!!
Monday, September 26, 2011
Monday Morning
Dr. O, one of Kody's neurosurgeons came in this morning....
His CSF tested negative on Friday, which is great it means the antibiotics are working. Today they are testing it again, if it is still negative then surgery to put in his new shunt is set for Wednesday, no time yet. If all goes well, we will be home by the weekend!!
Thank you everyone for the prayers and well wishes!!
His CSF tested negative on Friday, which is great it means the antibiotics are working. Today they are testing it again, if it is still negative then surgery to put in his new shunt is set for Wednesday, no time yet. If all goes well, we will be home by the weekend!!
Thank you everyone for the prayers and well wishes!!
Sunday, September 25, 2011
Sunday Bear Update
We're dealing with IV's from hell for the past few days, last night being the worst.
His veins just don't want to cooperate probably due to so much scar tissue.
Anyway, they put a few in last night so far the last one is working OK. They suggested a PIC line but his neurosurgeon said this morning he's hoping he'll be off antibiotics by Wednesday so it's too late to get involved with that.
As of yesterday, he's able to walk around as long as I hold his bag of brain juice next to him. Karyelle and Kolin are coming over today and later I'll be taking Kolin back to Leesburg while Karyelle hangs with Bear.
Thank you everyone for the prayers and all the new FB friends.:)
His veins just don't want to cooperate probably due to so much scar tissue.
Anyway, they put a few in last night so far the last one is working OK. They suggested a PIC line but his neurosurgeon said this morning he's hoping he'll be off antibiotics by Wednesday so it's too late to get involved with that.
As of yesterday, he's able to walk around as long as I hold his bag of brain juice next to him. Karyelle and Kolin are coming over today and later I'll be taking Kolin back to Leesburg while Karyelle hangs with Bear.
Thank you everyone for the prayers and all the new FB friends.:)
Saturday, September 24, 2011
A Much Better Day
Last night he got hit hard with another headache but this morning his neurosurgeon came in and adjusted the settings on his draining tubes so that they drain a little bit more.
Within thirty minutes that worked like a charm.:)
Right now we're waiting for Karyelle and Kolin to show up...Oh, that reminds me, Kolin won his game today 32-2!!
Many thanks to Kayara and my friend RZ for sending me updates and pictures.
Here we are today, bored and wanting out of this hospital sooooo bad...
And here's Kolin at today's home game against Monteverde,FL.
Have a beautiful day everyone!!
Within thirty minutes that worked like a charm.:)
Right now we're waiting for Karyelle and Kolin to show up...Oh, that reminds me, Kolin won his game today 32-2!!
Many thanks to Kayara and my friend RZ for sending me updates and pictures.
Here we are today, bored and wanting out of this hospital sooooo bad...
And here's Kolin at today's home game against Monteverde,FL.
Have a beautiful day everyone!!
Friday, September 23, 2011
Kody's Friday Update
Sorry I haven't been able to update more often, the hospital internet goes out a lot or it's just real, real slow most of the time.
Anyway, it's working this morning so I'll make this quick.
His color is coming back and he is in no pain, well except where all the stitches are but honestly he doesn't complain about that.
He accidentally pulled out the IV in his neck so right now his nurses are working on that.
Last night he ended up with a nasty reaction to the Vancomicyn {the antibiotic he's been getting thru his IV} so they had to discontinue that, load him up with Benedryl thru the IV and switch to IV Penicillin.
This morning was the first morning he actually had an appetite, so that's good. It's torture watching him refuse food cuz he's a teenage boy, I'm so used to watching him eat all day every day. :)
This morning we were told that they finally have answers as to what has happened and it seems the infection is caused by the same organisms that cause acne. They tell us for this to happen is very rare.
I asked what else we can do to avoid this and the answer is probably nothing more then what he does for his acne and also we all have to up the amount of hand sanitizer we use, like leaving a bottle in every room and using it often {at home}.
We still have to wait for that cyst in his belly to go away before they can put him back into surgery for his new shunt so we will probably be here for till the first weekend in October, if all goes well.
Thank you so much for all the support, encouragement and prayers.
Love you all!!
PS. I still need to download my phone pictures on the laptop so as soon as I do today, I'll put some up on here.
I hope nobody minds that I probably will show his head where the tubes are draining externally.
Anyway, it's working this morning so I'll make this quick.
His color is coming back and he is in no pain, well except where all the stitches are but honestly he doesn't complain about that.
He accidentally pulled out the IV in his neck so right now his nurses are working on that.
Last night he ended up with a nasty reaction to the Vancomicyn {the antibiotic he's been getting thru his IV} so they had to discontinue that, load him up with Benedryl thru the IV and switch to IV Penicillin.
This morning was the first morning he actually had an appetite, so that's good. It's torture watching him refuse food cuz he's a teenage boy, I'm so used to watching him eat all day every day. :)
This morning we were told that they finally have answers as to what has happened and it seems the infection is caused by the same organisms that cause acne. They tell us for this to happen is very rare.
I asked what else we can do to avoid this and the answer is probably nothing more then what he does for his acne and also we all have to up the amount of hand sanitizer we use, like leaving a bottle in every room and using it often {at home}.
We still have to wait for that cyst in his belly to go away before they can put him back into surgery for his new shunt so we will probably be here for till the first weekend in October, if all goes well.
Thank you so much for all the support, encouragement and prayers.
Love you all!!
PS. I still need to download my phone pictures on the laptop so as soon as I do today, I'll put some up on here.
I hope nobody minds that I probably will show his head where the tubes are draining externally.
Wednesday, September 21, 2011
UPDATE
After a VERY rough night of neurological changes that were bad...REALLY bad, and an entire morning of it being even worse, Kody finally made it into surgery at about 9:30 this morning and got out around noon.
He woke up for about five seconds for me, long enough to say "I love you Mom" and he's been back to sleep since.
They found out that much of the tubing near his neck was in such bad shape it was only a matter of time before they would have to take it out anyway.
He's resting peacefully right now and although he has no shunt he is draining externally from his head.
He'll be this way for about seven days before they replace the whole shunt.
It's been a long few days, exhaustion is hitting hard.
Here's a quick picture I took with my phone when he got back to his room. You can see where his head was shaved for the drain.
I'll try to update as often as I can.
Don't forget you can find me on Facebook: Isabella Sophia Provolone
Thank you everyone for the love!!
He woke up for about five seconds for me, long enough to say "I love you Mom" and he's been back to sleep since.
They found out that much of the tubing near his neck was in such bad shape it was only a matter of time before they would have to take it out anyway.
He's resting peacefully right now and although he has no shunt he is draining externally from his head.
He'll be this way for about seven days before they replace the whole shunt.
It's been a long few days, exhaustion is hitting hard.
Here's a quick picture I took with my phone when he got back to his room. You can see where his head was shaved for the drain.
I'll try to update as often as I can.
Don't forget you can find me on Facebook: Isabella Sophia Provolone
Thank you everyone for the love!!
Tuesday, September 20, 2011
:(
things are going from bad to worse.
They capped off his external tubes today to see how he would react and it was bad, instant headaches that have taken him out all day. All day of pain meds and non stop sleeping/waking up briefly and vomiting.
His surgery is now 9:30 AM with an MRI first.
They are taking his entire shunt out and putting in external tubes to drain from his head (now they come out of his belly). So, for seven days he won't have a shunt while they run more antibiotics in him because the infection did go up to his brain.
After a week he'll need to have another surgery to put back in a whole new shunt. After he recovers from that we can finally go home.
So, we're looking at another ten days or so from tomorrow.
In the mean time he is really out of it,just plain miserable. I don't have a camera on me so the only pictures I can get are with my phone. I'll try to add them as I can.
Here's one I took this morning..
See the tube coming out of his stomach? That tube is his external drain, it drains the cerebral spinal fluid from his ventricles into a bottle that hangs from and IV pole. Tomorrow morning he'll have one coming out of his head instead of his stomach.
Sorry it's not the greatest picture but right now it's all I have. :(
I'll try to keep this updated as often as I can,but please check Facebook cuz I will probably be updating that more often since I can do that with my phone.
Thank you everyone for the prayers.
They capped off his external tubes today to see how he would react and it was bad, instant headaches that have taken him out all day. All day of pain meds and non stop sleeping/waking up briefly and vomiting.
His surgery is now 9:30 AM with an MRI first.
They are taking his entire shunt out and putting in external tubes to drain from his head (now they come out of his belly). So, for seven days he won't have a shunt while they run more antibiotics in him because the infection did go up to his brain.
After a week he'll need to have another surgery to put back in a whole new shunt. After he recovers from that we can finally go home.
So, we're looking at another ten days or so from tomorrow.
In the mean time he is really out of it,just plain miserable. I don't have a camera on me so the only pictures I can get are with my phone. I'll try to add them as I can.
Here's one I took this morning..
See the tube coming out of his stomach? That tube is his external drain, it drains the cerebral spinal fluid from his ventricles into a bottle that hangs from and IV pole. Tomorrow morning he'll have one coming out of his head instead of his stomach.
Sorry it's not the greatest picture but right now it's all I have. :(
I'll try to keep this updated as often as I can,but please check Facebook cuz I will probably be updating that more often since I can do that with my phone.
Thank you everyone for the prayers.
Good News!!
No shunt tap today!!!
They capped off his external because he was putting out so little fluid. MRI today or tomorrow morning to look at the tumor and his ventricles. If, {fingers crossed & lots of prayers} he is still putting out only a small amount of fluid and he doesn't start getting pressure headaches tomorrow morning during surgery they are going to take out the entire shunt...its possible he won't need one anymore after 9 1/2 years!!!!
Find me on Facebook...
Isabella Sophia Provolone
It's been easier to update there quicker for now. :)
They capped off his external because he was putting out so little fluid. MRI today or tomorrow morning to look at the tumor and his ventricles. If, {fingers crossed & lots of prayers} he is still putting out only a small amount of fluid and he doesn't start getting pressure headaches tomorrow morning during surgery they are going to take out the entire shunt...its possible he won't need one anymore after 9 1/2 years!!!!
Find me on Facebook...
Isabella Sophia Provolone
It's been easier to update there quicker for now. :)
Kody's Update This Morning
He woke up with a headache this morning, which sucks. :(
He's also having his shunt tapped today, basically what that means is they couldn't drain enough cerebral spinal fluid out of the external tubing to text so they will have to go directly through the shunt in his head. One or two pokes with a needle/syringe and hopefully they will have enough.
Also, he's on the schedule for and MRI.
I'll update as often as I can. Thank you so much for the prayers and well wishes.
Time to go hit up Starbucks. :)
He's also having his shunt tapped today, basically what that means is they couldn't drain enough cerebral spinal fluid out of the external tubing to text so they will have to go directly through the shunt in his head. One or two pokes with a needle/syringe and hopefully they will have enough.
Also, he's on the schedule for and MRI.
I'll update as often as I can. Thank you so much for the prayers and well wishes.
Time to go hit up Starbucks. :)
Monday, September 19, 2011
Kody In The Hospital
is is the first chance I had to get a computer...sorry I couldn't figure out how to update from my phone.
Anyway, at 2:30 Sunday morning Kody woke me in severe abdominal pain. When he asked to get to the hospital I knew it hurt bad, he never complains.
Well, turns out the "pulled muscle" that LRMC diagnosed a few weeks ago was really the beginnings of a full blown shunt infection that reared it's nasty head that morning.
We got to LRMC about 2:40, they heavily medicated him and took cat scans where they found a pocket of fluid near the end of his shunt tubing which they felt could be an infection. They called his neurosurgeon in Orlando who wanted him taken by ambulance to Arnold Palmer Childrens Hospital STAT.
While the EMS took Kody I flew home to grab Kolin and an overnight bag and hauled ass to Orlando. Fortunetly Karyelle who only lives 15 minutes away was able to get there so when Kody arrived he wouldn't be alone.
They ran x rays and scans from his head down to his belly and decided that it was a severe infection. They admitted him, got him into a room and because there was no time, sedated him at his bed with a team of five nurses and two doctors and cut a small hole in his belly where they pulled out a lot of the tubing that sits in his stomach.
The did do testing and there is an infection for sure.
In the meanwhile, until that infection clears they put an external tube from his belly that goes into a bottle which is hung by his bed to collect the csf (cerebral spinal fluid).
He slept all day and night and most of the morning, he has two kinds of antibiotics going in him and today, though he still hurts, but not as bad,they tested the fluid that runs through the external tube for infection.
In a few days he will have general surgery to replace all the shunt line tubing and if today's test comes out positive for infection they will end uphaving to replace the entire shunt, which right now we will be here a week, but if they replace the whole shunt, probably ten days.
So much for just an over night bag LOL.
Please if you could, pray it comes out negative, then he'll only have tohave the less invasive of the two.
We are still waiting to find out why this happened since for him to suddenly get and infection that bad after all these years and not even run a fever is extremely rare.
He did last week miss a few days of school, headache, stomachache, vomiting...this was what I thought a virus he picked up from school, turns out it wasn't a virus after all. :(
Anyway...I better get back to Bear.
Thank you to KK for helping run back and forth and Kayara for hanging with Kolin while I'm here with Kody.
Have a beautiful day everyone!!
Anyway, at 2:30 Sunday morning Kody woke me in severe abdominal pain. When he asked to get to the hospital I knew it hurt bad, he never complains.
Well, turns out the "pulled muscle" that LRMC diagnosed a few weeks ago was really the beginnings of a full blown shunt infection that reared it's nasty head that morning.
We got to LRMC about 2:40, they heavily medicated him and took cat scans where they found a pocket of fluid near the end of his shunt tubing which they felt could be an infection. They called his neurosurgeon in Orlando who wanted him taken by ambulance to Arnold Palmer Childrens Hospital STAT.
While the EMS took Kody I flew home to grab Kolin and an overnight bag and hauled ass to Orlando. Fortunetly Karyelle who only lives 15 minutes away was able to get there so when Kody arrived he wouldn't be alone.
They ran x rays and scans from his head down to his belly and decided that it was a severe infection. They admitted him, got him into a room and because there was no time, sedated him at his bed with a team of five nurses and two doctors and cut a small hole in his belly where they pulled out a lot of the tubing that sits in his stomach.
The did do testing and there is an infection for sure.
In the meanwhile, until that infection clears they put an external tube from his belly that goes into a bottle which is hung by his bed to collect the csf (cerebral spinal fluid).
He slept all day and night and most of the morning, he has two kinds of antibiotics going in him and today, though he still hurts, but not as bad,they tested the fluid that runs through the external tube for infection.
In a few days he will have general surgery to replace all the shunt line tubing and if today's test comes out positive for infection they will end uphaving to replace the entire shunt, which right now we will be here a week, but if they replace the whole shunt, probably ten days.
So much for just an over night bag LOL.
Please if you could, pray it comes out negative, then he'll only have tohave the less invasive of the two.
We are still waiting to find out why this happened since for him to suddenly get and infection that bad after all these years and not even run a fever is extremely rare.
He did last week miss a few days of school, headache, stomachache, vomiting...this was what I thought a virus he picked up from school, turns out it wasn't a virus after all. :(
Anyway...I better get back to Bear.
Thank you to KK for helping run back and forth and Kayara for hanging with Kolin while I'm here with Kody.
Have a beautiful day everyone!!
Monday, September 12, 2011
Yarnin'
"Yarnin'", not "knitting"...that's what Kolin has always called it. :)
Anyway, in an attempt to put some zen in my night life {lol..night life, what the heck is that??}, I pick up the needles and create.
This is a top I made for myself, though I'll probably give it away cuz I have nowhere to wear it.
These pictures are actually the back of it, lace top...the front looks the same without the lace pattern. It would probably be really cute with skinny jeans and a pair of heels.
Recently I've been working on a baby blanket with boats in it. I have no idea why...I don't have a baby, I don't know anybody who is having a baby. I guess I just liked the design. Crazy, I know.
Kolin's football has been keeping us busy every Saturday. He won against Winter Park last weekend, 35-7. He finally completed one of the goals he's had for this season...to sack the QB. He did it!! :)
Kody's been going through a "phase" he seriously better get out of soon. Yeah...it's making me insane. I know he's still grieving and I know I can't be "Dad", but I'm trying..I really am. I make mistakes sometimes but at the end of every day, I have given it my all. Sadly, my "all" isn't good enough it seems for him. :(
Other then that, we've been managing to make it through everyday. I miss my man more and more and more every single second of every single day.
I really...REALLY missed him this morning when my vacuum needed a "Vinny Tune-Up", stupid me forgot all about cleaning the filter...since like June.
I would give up everything to hear him say "Damn it Kim, why do you kill every appliance I buy you, your not getting anything new, learn how to care for your stuff, the bank of Vinny is CLOSED!" :)
Hope everyone out there is having a great day!!
Anyway, in an attempt to put some zen in my night life {lol..night life, what the heck is that??}, I pick up the needles and create.
This is a top I made for myself, though I'll probably give it away cuz I have nowhere to wear it.
These pictures are actually the back of it, lace top...the front looks the same without the lace pattern. It would probably be really cute with skinny jeans and a pair of heels.
Recently I've been working on a baby blanket with boats in it. I have no idea why...I don't have a baby, I don't know anybody who is having a baby. I guess I just liked the design. Crazy, I know.
Kolin's football has been keeping us busy every Saturday. He won against Winter Park last weekend, 35-7. He finally completed one of the goals he's had for this season...to sack the QB. He did it!! :)
Kody's been going through a "phase" he seriously better get out of soon. Yeah...it's making me insane. I know he's still grieving and I know I can't be "Dad", but I'm trying..I really am. I make mistakes sometimes but at the end of every day, I have given it my all. Sadly, my "all" isn't good enough it seems for him. :(
Other then that, we've been managing to make it through everyday. I miss my man more and more and more every single second of every single day.
I really...REALLY missed him this morning when my vacuum needed a "Vinny Tune-Up", stupid me forgot all about cleaning the filter...since like June.
I would give up everything to hear him say "Damn it Kim, why do you kill every appliance I buy you, your not getting anything new, learn how to care for your stuff, the bank of Vinny is CLOSED!" :)
Hope everyone out there is having a great day!!
Tuesday, September 6, 2011
No News Is Good News
Or what I like to call..."Been busy....real busy".
First, I hope everyone had a great long weekend. We spent ours at Kolin's game on Saturday, then the rest of it at Karyelle's place. We met her new b-friend, looks like things are turning towards the serious...which means the year that she set her goals as to staying in Florida just might be extended. :)
Anyway, we got home last night and were wiped out tired...we kept busy like all weekend, which is good.
Kody Bear ended up going to bed last night not feeling great and by this morning he was 100% miserable, so he stayed home today.
Kolin, as always gets up and goes. He likes routine. Honestly, he hardly ever stays home, he has to be dying sick.
Kolin's game went good, well not good cuz we lost but good cuz he had fun and well, the other team was really good..so what can you do? Try better next time.
You know, last year it really would have bothered him that he lost. He would have been pissed and miserable and snotty the whole weekend.
This year though, he's OK with it, in the big picture if all things called life...losing a football game is not the worst thing in the world.
So, like we do around here a lot lately, we pick ourselves up, brush ourselves off and keep on trucking...that's what Vinzo would want us to do.
Here's some snaps from Saturday. If you get confused as to which one is our kid, my best advice...look for the bright orange shoes. LOL!
Running onto the field...
IDK what he's doing here, talking maybe?
Love when they line up like this...
Contact sports are out of the question for Kody but because the team loves him and because he loves being a part of the team, he is once again, the teams official "waterboy". And ummm, no it's not your imagination, my baby boy is now taller then his big brother...
Don't let the skinniness fool you, he's actually pretty strong...
H2-Awesomeness, that's what they call him, LOL....
Anyway, back on the home front. I have been doing a lot of serious thinking about a way to make Karl's death not in vain, something positive out of the worst experience of our lives I guess you could say.
Since we have just recently found out that the other party involved in the head on had a blood alcohol level of .2, which from what I have been told is extremely high, I feel that it is in my calling to be the voice for my husband {who btw was 100% negative for alcohol and drugs, he lead a very clean life}.
Apparently, there was much more to this accident then what we were originally told.
I am putting much thought into this and I do have an idea I would like to hopefully, with the right connections, make a reality.
I'd rather not give it away right now until I have all my ducks in a row, t's crossed, i's dotted, etc.
All I can say is that in my dreams and in my grief I pray that our story can change a life and or save a life.
Well..I better get going for now, Kody needs some TLC. :)
Have a beautiful day everyone!!
First, I hope everyone had a great long weekend. We spent ours at Kolin's game on Saturday, then the rest of it at Karyelle's place. We met her new b-friend, looks like things are turning towards the serious...which means the year that she set her goals as to staying in Florida just might be extended. :)
Anyway, we got home last night and were wiped out tired...we kept busy like all weekend, which is good.
Kody Bear ended up going to bed last night not feeling great and by this morning he was 100% miserable, so he stayed home today.
Kolin, as always gets up and goes. He likes routine. Honestly, he hardly ever stays home, he has to be dying sick.
Kolin's game went good, well not good cuz we lost but good cuz he had fun and well, the other team was really good..so what can you do? Try better next time.
You know, last year it really would have bothered him that he lost. He would have been pissed and miserable and snotty the whole weekend.
This year though, he's OK with it, in the big picture if all things called life...losing a football game is not the worst thing in the world.
So, like we do around here a lot lately, we pick ourselves up, brush ourselves off and keep on trucking...that's what Vinzo would want us to do.
Here's some snaps from Saturday. If you get confused as to which one is our kid, my best advice...look for the bright orange shoes. LOL!
Running onto the field...
IDK what he's doing here, talking maybe?
Love when they line up like this...
Contact sports are out of the question for Kody but because the team loves him and because he loves being a part of the team, he is once again, the teams official "waterboy". And ummm, no it's not your imagination, my baby boy is now taller then his big brother...
Don't let the skinniness fool you, he's actually pretty strong...
H2-Awesomeness, that's what they call him, LOL....
Anyway, back on the home front. I have been doing a lot of serious thinking about a way to make Karl's death not in vain, something positive out of the worst experience of our lives I guess you could say.
Since we have just recently found out that the other party involved in the head on had a blood alcohol level of .2, which from what I have been told is extremely high, I feel that it is in my calling to be the voice for my husband {who btw was 100% negative for alcohol and drugs, he lead a very clean life}.
Apparently, there was much more to this accident then what we were originally told.
I am putting much thought into this and I do have an idea I would like to hopefully, with the right connections, make a reality.
I'd rather not give it away right now until I have all my ducks in a row, t's crossed, i's dotted, etc.
All I can say is that in my dreams and in my grief I pray that our story can change a life and or save a life.
Well..I better get going for now, Kody needs some TLC. :)
Have a beautiful day everyone!!
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