BACK HOME
We just arrived back home with our beloved little man. Cole is in good spirits, but is still a little groggy from the anesthesia. Also, he is continuing to announce every bout of flatulence with an "I pooted" moniker.
The verdict of the day was that Cole's heart is strong and he is ready to undertake the challenge of his young life - his third open heart surgery which will take place on Wednesday. The surgery will be performed by Dr. Larry Watts at Levine Children's Hospital in Charlotte, NC.
WEDNESDAY'S SURGERY
As some of you know, this is the third phase of the "Fontan Procedure" which is a complicated set of surgeries for children with a single ventricle heart. Instead of 4 chambers (a normal heart), Cole has one chamber which means that all of the blood mixes together and this creates a need for surgeries so that the red blood and the blue blood go to the correct places. Think of it as redoing the plumbing for a commercial office building. That is what is happening on Wednesday. For a more detailed description, google "Fontan Procedure" and read away.
CHANCES
This third surgery will involve placing a tube inside of Cole's heart so that the blue blood can get to the lungs effectively. His prognosis is very good in that there is only a 1 out of 100 chance that something could go wrong. That sounds very good because that means that there is only a 1% chance that something could go wrong. However, when you think about this a little deeper, the stakes rise a bit.
What is someone told you tomorrow that there was a 1 in a billion chance that you would be stabbed when you left your house...would you go to work? Most of us would. What about 1 in a million....I still would go. 1 in 100? I think I would be watching a lot of "The Price is Right" or whatever else comes on TV during a weekday when the rest of us are working. When the outcome is something horrible, 1 in 100 sounds too frequent to me.
Now, when that ONE occurence is life or death, you could see the predicament. If that ONE percent were to happen, it would mean Cole could have a stroke, have a blood clot, experience heart failure, and he would meet Jesus. He would be better off, but the remains of what he would leave behind would be a family that nobody would want to know. We would be, to put it nicely, devastated.
Some may think we are being over-dramatic about this, but until you have looked a surgeon in the eye and been told that there is a 1 in 100 chance that your baby boy will be gone in 2 days, please be slow to judge.
However, we know that Cole's life and his heart are in the Hands of the Creator of this world. The One that can move mountains, walk on water, heal the sick, etc. and that his heart will stop when HE ALONE decides it will. His will will be done, and that is what we want above all else.
That being said, it still creates for a bit of a tense moment when you feel like Abraham serving up Isaac to the Lord when you hand over your 2 year old son to a heart surgeon.
THANKS
Thank you so much to everyone for the kind thoughts, words, actions, and prayers. We still need them and will continue to need them. Even after his surgery, Cole faces a tough rehab where our family will still remain somewhat quarantined so that he does not get sick.
One other point, please know our heart when I say that we would love to be able to personally call each and every person to give you an update, but that is just not possible right now. That is the reason we created this blog - so that you would be able to check up on Cole when it is convenient for you and so that some of the burden of answering the same questions time after time is removed from us.
God Bless You all and Thank You for reading. More to come on Wednesday.
Monday, September 20, 2010
In Recovery
Cole is out of his cath procedure and is doing well. There will be a big update tonight when we get home.
For now, he is resting in mommy's arms and is doing well.
For now, he is resting in mommy's arms and is doing well.
Sweet Dreams Cole Bear
We arrived at the 5th floor of Levine Children's Hospital (LCH from here on out) at 5:40 am and began the process of checking in. Daddy was immediately sent to registration to be robbed.....errr....to pay our deductible. It is good to know that in this world of inefficiency, LCH has laserlike precision when it comes to collecting money.
Then, while we waited to be taken down to the Catherization Room, Cole was pulled around the 5th floor in a Red Rider wagon. He was very quiet and well behaved, but was irritable if anyone spoke to him. Just like a Griffin, grouchy in the morning!
At about 7 am, we were escorted down to the Cath Room waiting area where Cole decided it was time to snuggle - first on mommy and then on daddy the furnace. Once he was good and warm, he laid his soft head down and his eyes became heavy. About that time, Dr. Paolillo rounded the corner and said hello. He was especially well groomed (clean shaven, shirt tucked in, hair perfectly parted) and that made me feel better for some reason. I guess it would be weird if your son's doctor showed up with stubble and a nosering. I asked him if he had gotten any rest over the weekend, and he said yes but that he was disappointed my the "Panther Experience." Join the club!
After we signed about 537 forms and answered the allergy questions, we walked Cole into the OR where I held him like a baby while they placed the anesthesia mask over his mouth and nose and he smiled and reached up to touch my face. It was a very sweet moment and it choked me up just a bit, but I was able to hold it together and not cry....too soon for that. After about 30 seconds, his long eyelashes fluttered one more time and then he then drifted off to sleep. I put him on the bed and mommy and I had one more chance to kiss his head before being escorted back up the 5th floor waiting room at LCH.
The procedure is scheduled to take 3 hours or less and the purpose is to look around in his heart, take pictures, take measurements, observe, take out the trash, wash the dishes....oh wait, those were my chores last night....you get the picture. Pun intended.
More updates as we receive them.
Then, while we waited to be taken down to the Catherization Room, Cole was pulled around the 5th floor in a Red Rider wagon. He was very quiet and well behaved, but was irritable if anyone spoke to him. Just like a Griffin, grouchy in the morning!
At about 7 am, we were escorted down to the Cath Room waiting area where Cole decided it was time to snuggle - first on mommy and then on daddy the furnace. Once he was good and warm, he laid his soft head down and his eyes became heavy. About that time, Dr. Paolillo rounded the corner and said hello. He was especially well groomed (clean shaven, shirt tucked in, hair perfectly parted) and that made me feel better for some reason. I guess it would be weird if your son's doctor showed up with stubble and a nosering. I asked him if he had gotten any rest over the weekend, and he said yes but that he was disappointed my the "Panther Experience." Join the club!
After we signed about 537 forms and answered the allergy questions, we walked Cole into the OR where I held him like a baby while they placed the anesthesia mask over his mouth and nose and he smiled and reached up to touch my face. It was a very sweet moment and it choked me up just a bit, but I was able to hold it together and not cry....too soon for that. After about 30 seconds, his long eyelashes fluttered one more time and then he then drifted off to sleep. I put him on the bed and mommy and I had one more chance to kiss his head before being escorted back up the 5th floor waiting room at LCH.
The procedure is scheduled to take 3 hours or less and the purpose is to look around in his heart, take pictures, take measurements, observe, take out the trash, wash the dishes....oh wait, those were my chores last night....you get the picture. Pun intended.
More updates as we receive them.
Sunday, September 19, 2010
Mama's Boy Delight
Hello all - this is Cole's daddy, Matt, re-entering the role of "substitute author" for this blog. For those of you who have followed this blog since the beginning, you might remember me. For those who have not, hopefully my take on things will provide a bit of a change-up from Mommy.
As we were putting Cole to bed tonight, he was sitting on Laura's lap getting ready to hear a great rendition of "Puff the Magic Dragon." When I crouched down beside him and asked if we could pray for him he said "no....get out" while pointing me to the nearest exit. He continued "get out daddy, I sleeping." Then we all enjoyed a laugh and I listened, lest he turn into a chimp and start hollering.
Here I was hoping for this magical moment where I would lead us in a powerful prayer that would rattle Heaven, and instead I get bossed around by a blond headed baby boy. Every time I have something mapped out in my head how it "should" go, it never goes that way and this was just another instance.
No real point to that story, but it just struck me as funny that Cole is in good spirits the night before he faces the biggest challenge of his young life.
Of course, we will send along any new updates tomorrow.
God Bless and goodnight!
As we were putting Cole to bed tonight, he was sitting on Laura's lap getting ready to hear a great rendition of "Puff the Magic Dragon." When I crouched down beside him and asked if we could pray for him he said "no....get out" while pointing me to the nearest exit. He continued "get out daddy, I sleeping." Then we all enjoyed a laugh and I listened, lest he turn into a chimp and start hollering.
Here I was hoping for this magical moment where I would lead us in a powerful prayer that would rattle Heaven, and instead I get bossed around by a blond headed baby boy. Every time I have something mapped out in my head how it "should" go, it never goes that way and this was just another instance.
No real point to that story, but it just struck me as funny that Cole is in good spirits the night before he faces the biggest challenge of his young life.
Of course, we will send along any new updates tomorrow.
God Bless and goodnight!
Friday, September 17, 2010
Heart Catheterization and then the Big One
We have to have Cole at Levine Children's Hosptial on Monday, September 20th at 5:30 in the morning.
Dr. Watts is suppose to meet with us after to talk to us about the big surgery on Wenesday September 22nd.
This will be the last surgery in the Fontan Procedure. It is a three surgery process and hopefully the last time any heart surgeries have to be done on Cole!
We will be back to add more to update everyone as a way to communicate how Cole is doing.
Thank you for all your prayers and support! Everyone once again has gone above and beyond and it is a good place to be so loved and to see how Cole has touched your lives by the little boy he is!
Dr. Watts is suppose to meet with us after to talk to us about the big surgery on Wenesday September 22nd.
This will be the last surgery in the Fontan Procedure. It is a three surgery process and hopefully the last time any heart surgeries have to be done on Cole!
We will be back to add more to update everyone as a way to communicate how Cole is doing.
Thank you for all your prayers and support! Everyone once again has gone above and beyond and it is a good place to be so loved and to see how Cole has touched your lives by the little boy he is!
Wednesday, September 8, 2010
Cole vs. The EKG
We went yesterday to meet Dr. Joseph Paolillo. He is the new cardiologist who will be doing the heart catherization before the surgery. He was very nice and easy to talk to.
Before Dr. Paolillo came in Cole had the usual "oxygen monitor" strapped to his toe/foot so we could see where his oxygen levels were. They were at about 84/86 which is pretty normal for Cole at this stage.
Then they put the EKG stickers on and clipped all the wires to him. Surprisingly he did not start screaming and flinging himself around like a chimpanzee. We were holding our breath because one never knows when the chimp will come out! He stared at the whole thing and was a little intrigued. Intrigue is good.
I attempted to stealthly remove one of the stickers and that resulted in the appearance of the chimp. Not a full blown appearance of the chimp but enough to leave you with an unpleasant experience to not repeat the same action twice.
Cole then started to pull them off himself. No "ouchie", no pain, just pulling them off to the point that it looked painful, but whatever works.
Dr. Paolillo came in and introduced himself and went over the details of what he would be doing for the heart catheterization to get everything checked out for Dr. Watts to do the surgery.
One thing different about this one is they will do one in his neck and one in his leg instead of just going up through the leg to look at his heart.
There are unpleasant things they have to share even though they are rare just in case they happen, which is comforting instead of surprises after you get your baby in there and they say to just go wait in the waiting room, this is routine and 20 minutes later they are running in and telling you to come with them as quickly as possible and you get back to where your baby is and they say we need you to sign this right now so we can do this extra procedure while we are in there because we found some collaterals (extra blood vessels) that need to be closed down with coils and there are a lot. What are you going to say? Let us think about it? Can you give us a minute? You just sign and trust.
It was nice to have the could be's disclosed up front this time. He said it was rare but one thing with Cole's specific heart defects are his bottom half sometimes won't communicate with the top half after a heart catheter and a heart block will happen, which the heart stops. So they will have a temporary pace maker put in to get things going again if that is the case. Again he said it's rare but it does happen. You try as a parent to sit there and nod like it's all scientific information and you have no emotional connection to the person they are saying this could happen to.
Our biggest hurtle and prayers needed right now are Cole staying healthy and strong to have this procedure done so we can move on to surgery.
Thank you to everyone who holds Cole in their prayers like he is their own baby/grandbaby going through this!
Wednesday, August 25, 2010
Winter, Spring, Summer and The Three Bandits
It's been a while since we have updated the blog. Mainly because it's low on the totem pole since Lila came along. The adults being outnumbered in the house puts life into a different dimension.
We have had quite a few people run into us or contact us to ask why we haven't kept up with the updates and we just figured nobody was even visiting the blog anymore. Now that we know differently we won't be so slack to get back here.
Lets see, since January..................
We were not planning on quarantining everyone again, but than H1N1 came along and even then we didn't take it seriously until healthy strong hearted children without oxygen issues started dying and we thought maybe we should take this a little more serious and pull Cole out of school, church, etc. So everyone was home again from October to March. The season officially ends around May but we felt comfortable enough and the hospitals started letting children back into the hospitals in March. Not that they weren't taking children the whole time. The healthy ones are like petri dishes and they didn't need any extra carrier monkeys bringing anything with them into the hospitals.
So, Spring, I ventured outside trying to get the hang of three and how to walk with three (which was Cole and Lila in the double stroller and after a block or two Ava not wanting to walk anymore and finding a spot she could squish into, half covering Cole and half covering Lila)and me trying to push them all like that, or grocery shop( which left little space for groceries, so I piled them on top of Ava and Cole and below the cart), or learning to do pretty much anything with three.
Summer I think came in the Spring for us. It seems like it's been hot since March. The heat has kept us in most of the summer and made a very non-creative mom try being creative which usually started and ended very quickly because Cole would eat anything in front of him and whatever he didn't eat he dropped and Lila would come along and take care of it for him. So summer has been a blur of heart racing until I thought I'd pass out from the items that have made it into the mouths of babes that they gagged and tried to choke on.
Toy Story 2 with Zurg, and Tom and Jerry have become favorites this summer and Cole calls them Thomas and G. When summer has not been a blur of small children finding things to choke on the other blur is Cole everywhere he goes or whatever he does.
This picture sums up Cole being two........
His form of communication is screaming like a chimp, hitting, or kicking. He is classic terrible twos. We hear a lot of "No sir" from Ava and a lot of crying from Lila The Tank Griffin. Cole doesn't even have to be told anymore to go in timeout. He goes in right after he does something even if we weren't going to send him. He spends his two minutes telling me he's sorry to Lila or Ava. He thinks time out will end early if he starts in on apologies immediately.
We won't go into details but we have had a busy summer when I look back at pictures. Fort Mill Strawberry Festival, the annual family beach trip in May, baby pools in the yard, rainbow sprinkler in the yare, and big swimming pools with me and three who don't know how to swim(Jesus, Mary and Joseph!)
popsicles, ice cream cones, Spraygrounds, Spraygrounds and more Spraygrounds (which you will not see Cole in because he was not a fan of the sprayground, driving to New York City for 4th of July (yes, with all three gremlins)and the mother of all Spraygrounds in Central Park, and Lila's one year birthday!
We visited Cole's cardiologist in July and they told us we had to wait to get in with the new dr. who starts Sept. 1st, who preforms the heart catheterizations. We have an appt. just to meet him Sept. 7th. The heart cath. will be scheduled some time after that and then Cole's third heart surgery will be scheduled some time after that.
We have had quite a few people run into us or contact us to ask why we haven't kept up with the updates and we just figured nobody was even visiting the blog anymore. Now that we know differently we won't be so slack to get back here.
Lets see, since January..................
We were not planning on quarantining everyone again, but than H1N1 came along and even then we didn't take it seriously until healthy strong hearted children without oxygen issues started dying and we thought maybe we should take this a little more serious and pull Cole out of school, church, etc. So everyone was home again from October to March. The season officially ends around May but we felt comfortable enough and the hospitals started letting children back into the hospitals in March. Not that they weren't taking children the whole time. The healthy ones are like petri dishes and they didn't need any extra carrier monkeys bringing anything with them into the hospitals.
So, Spring, I ventured outside trying to get the hang of three and how to walk with three (which was Cole and Lila in the double stroller and after a block or two Ava not wanting to walk anymore and finding a spot she could squish into, half covering Cole and half covering Lila)and me trying to push them all like that, or grocery shop( which left little space for groceries, so I piled them on top of Ava and Cole and below the cart), or learning to do pretty much anything with three.
Summer I think came in the Spring for us. It seems like it's been hot since March. The heat has kept us in most of the summer and made a very non-creative mom try being creative which usually started and ended very quickly because Cole would eat anything in front of him and whatever he didn't eat he dropped and Lila would come along and take care of it for him. So summer has been a blur of heart racing until I thought I'd pass out from the items that have made it into the mouths of babes that they gagged and tried to choke on.
Toy Story 2 with Zurg, and Tom and Jerry have become favorites this summer and Cole calls them Thomas and G. When summer has not been a blur of small children finding things to choke on the other blur is Cole everywhere he goes or whatever he does.
This picture sums up Cole being two........
His form of communication is screaming like a chimp, hitting, or kicking. He is classic terrible twos. We hear a lot of "No sir" from Ava and a lot of crying from Lila The Tank Griffin. Cole doesn't even have to be told anymore to go in timeout. He goes in right after he does something even if we weren't going to send him. He spends his two minutes telling me he's sorry to Lila or Ava. He thinks time out will end early if he starts in on apologies immediately.
We won't go into details but we have had a busy summer when I look back at pictures. Fort Mill Strawberry Festival, the annual family beach trip in May, baby pools in the yard, rainbow sprinkler in the yare, and big swimming pools with me and three who don't know how to swim(Jesus, Mary and Joseph!)
popsicles, ice cream cones, Spraygrounds, Spraygrounds and more Spraygrounds (which you will not see Cole in because he was not a fan of the sprayground, driving to New York City for 4th of July (yes, with all three gremlins)and the mother of all Spraygrounds in Central Park, and Lila's one year birthday!
We visited Cole's cardiologist in July and they told us we had to wait to get in with the new dr. who starts Sept. 1st, who preforms the heart catheterizations. We have an appt. just to meet him Sept. 7th. The heart cath. will be scheduled some time after that and then Cole's third heart surgery will be scheduled some time after that.
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