Wednesday, September 29, 2010

Recent Pics






This is Cole's girlfriend, crush, love of his life. "Need you Lisa" is what he said and I scooped him and balanced him to place him gently on her lap and he laid his head over and went to sleep. Then he proceeded to eat her lunch and the whole bag of chips she brought with her lunch.



Sunday, September 26, 2010

MOVIN ON UP TO THE 8TH FLOOR!

This was Cole yesterday 9/25/10 relaxing with Daddy



Movin on up to the east siiide (Matt and I were singing that to Cole as he looked at us like we were idiots)









Thank you to everyone that has given Cole something to make his recovery rooms more like home! I showed Cole each card and each book and each toy. He was trying to be a good sport and everything I showed him he said "wow" in a monotone voice:)

I went back up to Cole around dinner time and found a note left by his nurse


The nurses constantly have to come in to check vitals, give more medicine in his IV's (he feels whatever goes in and cries), drain chest tubes and so on, etc. After a while of this, he was crying "I go home, I go home" for the next hour. Trying to tell a 2 year old that the more he lets them do their job the quicker he gets to come home is a tough thing to do.

Matt came up late last night to spend the night since I was going to be there for the week.

Matt said this morning they went for a ride in Red Rider wagon and Cole clapped his hands and said "yea." It made my day because that is our Cole Bear, and to see his old self come out for a brief moment made things a little bit brighter! I can't wait to get back to him, but spending some good time with the girls and Sharon is nice too.

Friday, September 24, 2010

Like a Cat Whose Hair Has Been Rubbed In The Wrong Direction


This title describes how Cole was from about 11:30 on today. He was irritated with it all, with everyone and anything! He had his hands behind his head or we caught him in a moment with his hands on his face staring at Thomas and G (Tom and Jerry) and had one leg crossed over the other at the ankle just moving his foot with the O2 monitor strapped on his toe in a fast agitated circle. Round and Round his foot has gone until I left this evening to get some sleep and see the girls. Matt came this evening to spend some time with Cole. I went to sneak out because he seemed to be about to doze off in daddy's arms and I heard behind me in a small sleepy voice "don't go mom." I told him I would be back just not when. For the sanity for us all I came home to get sleep and go back tomorrow in the morning.
Thank you for the continued prayers! There is much to be thankful for and give God the praise.

Goodnight to everyone and sweet dreams. Tomorrow is a new day. I am hoping for donuts from MJ Donuts in Pineville! I am going to go read to Ava now and pray and maybe sing her song "Over The Rainbow," and tell her I love her:) The Tank Lila Griffin will get her love too:)

There is JOY in the morning! Good News of More Removal

I mentioned before that I stayed the night in Cole's room. I went into it knowing it would be hard, and I thought that would prepare me! Not so much. At 2:00 am, I was so tired I was sick to my stomach but I didn't want to go home because I knew I would just lay there wondering how Cole was.

Right now Cole is uncomfortable and that's just the way it is after something like this. I want to take away all his pain and discomfort, but at the same time that's not realistic after something like this. If it was, there would be no recovery time and it would be nice to have surgery and go home immediately after with no stay at the hospital and no pain.

The thing hurting Cole the most right now is having to cough from all the mucus from anesthesia. You can see him doing everything he can to not cough, and when he does, he cries. Every time he coughed during the night he cried "Need You Mom," and I would try to untangle from my blanket and hurry over and put my hand on his incision area. He needs pressure applied there if he sneezes or coughs to protect the breastbone so that it can grow back together correctly and the incision can heal. The other things causing discomfort are the chest tubes that drain excess fluid out away from his heart - where they are attached to his body they pull with any shifting.

He was upset all night. Cole's voice is so pitiful right now that he makes it even harder to not do what he wants done. He kept saying "Done, Mom," "Need You Mom," "Hold Me Mom," "Sleep In Your Bed Mom."

My bed last night was a bench in his room that I can tell you right now made me want to lose about 30 pounds. I think my hips are just a hair wider than that bench! Dr. Watts came in this morning, and I'm sure he sees lots of parents who have spent the night on that bench, but it is no pretty sight for him. He saw a mom who had mascara from the day before down her cheeks, hair halfway held in hair clips, and puffy eyes from crying and no sleep. My breath was so bad, and I am not kidding, it smelled like a dead animal. In addition, I did not make much sense when answering questions. I do remember that he asked "why is our little guy so agitated?" I kind of said as a question/statement "I think he's just acting like someone who just had surgery, I think he's unhappy but not unexpected unhappiness."

Dr. Watts said Cole will have one of the chest tubes removed today and his central line will be removed! Little by little Cole is becoming the little boy we all know and love again. His spirit is in there but it probably won't come out until later in the week. But, as all of these new attachments are slowly dropping off one by one, he will be more comfortable.

I came down to the 5th floor to update the blog because they were going to start the process to remove two more things and I don't like being there when that happens. One time I thought I could handle it, but when I tried I ended up leaving as quickly as possible because it's painful and Cole screams. They do it as quickly as they can and afterwards he is glad they did it because it makes him just a bit more comfortable.

Here is Cole after all the ouchies of removing some of the tubes and lines, sleeping peacefully.





On a sidenote, last night as I went to the car to get my blanket and pillow, a mommy was carrying her little boy (maybe 4-5 years old), hurrying him to the lobby of Levine's. He was crying like he was in pain and you could tell he had had treatment for cancer. I'm an emotional wreck right now anyway, and I never know when I will cry or if it will be manageable tears I can blink back and keep under control or an ugly cry where I cover my face because nobody should have to look at that kind of face:) BUT, this time it hit me in the two seconds it took for this mommy to hurry past with her little boy. It made me break down and cry in the parking deck because I can't imagine what that mommy is feeling and has been dealing with. Trying to be strong for her son (and possible other siblings) and maybe the daddy...or maybe he couldn't handle the stress and left her to deal with it by herself. Or maybe daddy had to stay with siblings because they didn't have someone to call so he could be there with his little boy. Please pray for this mommy and little boy that I passed last night.

There are millions of stories every day and there are hundreds right down here at the hospital. We are going through something I can't even put in words, but there are so many people going through much, much worse.

We are extremely humbled by everyone taking on our tough time right now as if it was their own and their own stuff taking a back seat. We know that what we are going through is not nearly as tremendous as what some of you are going through personally or with a family member and we do not take your support for granted!

I'm going to get recent pictures up as soon as my technologically advanced husband gets his hands on the camera and usb cord. These hospital computers are a bit different but thankfully we can even do the blog from here at all to update everyone!

Mommy's Arms







Last night Sharon and I came back to the hospital a little after 6:30. It's to be expected after a surgery that nobody is comfortable. It's so hard to try to not cry with your 2 year old as he cries and looks to you to make it go away and make it better. He just kept saying "need you mom."

At that point, there was no question that I was spending the night! Nobody needs to have that said twice by their little one.

After some switching and transfering lines and chest tubes (drainage tubes), Cole wanted me to hold him so we settled awkwardly in the rocking chair. Cole was finally comfortable because we were close. He was over the hand holding and he didn't care if it hurt to be transfered so I could hold him. He relaxed almost immediatley and finally closed his eyes to sleep.

He is really bothered by his central line since it is stitched and taped to his neck. If he pulls on it, he feels it pretty bad, but it automatically pulls with some of the weight from the other mechanics and things attached to it.

After a while of arms falling asleep, every muscle cramping, and some of them starting to have ticks from fatigue, I was still determined to hold him all night if that kept him relaxed and from crying. It didn't last too much longer because his chest tubes kept shifting and pulling and those really hurt with any kind of movement or touch. He was hurting and I couldn't take that I was doing it and I transfered him back to the bed.

I won't talk about all through the night because it will be like that every night until he goes home and I just need to focus on the fact that we are that much closer to Cole getting to go home.

Come back to some of these posts I will get pictures up asap!

Thursday, September 23, 2010

Something Else Encouraging

This was this morning when I walked in the room and he was sitting up but not focused and didn't know it was me.........



Matt and I as well as so many of you have been praying for months that every person who was suppose to be with Cole caring for him down to the ladies who come in to make sure Cole's room is sanitary and clean that they would be put there by God, or we would know that every person in Cole's path was suppose to be there and it was no coincidence.
I want everyone to know that those 8-10 people last night were the best of the best that "happened" to be there at that time. The head nurse was not even suppose to be there that day and especially in CVICU where we were. One of the cardiologists that was not there but was filled in on Cole's situation said. "Oh you had the dream team."

Dr. Watts came in close to 1:00 pm today and told us if we were going to step away from Cole and get out of the hospital, now would be the time. They have one on one nurses in CVICU but progressive is a different story and we will need to be there full time.

So we came home to show Ava and Lila that Cole is not the only one in our world right now. He's a big part but they only understand that we are their mommy and daddy no matter what is going on in life. We are grabbing some "Woody Crackers" a request of Cole's even though he can't eat yet because they don't want the stress of a possible hurl right now.
Woody Crackers are Cheez-its that have Toy Story characters on them. Totally and super nutritious they are! I'm also grabbing bribery items for when he starts being his old self again and wants to do his own 2 year old thing even if it hurts.

From a mommy's heart and I know Matt feels this way too but the one thing I can't wait to see is Cole's 152 tooth smile. He has teeth like a shark, I swear there are like 2 rows of teeth and a smile that takes up half his face!

I couldn't figure out what I kept feeling and it's almost like survivor's guilt. Even when we were leaving our nurse and another nurse were having a new patient coming over to CVICU a 5 month old baby coming out of surgery had coded in surgery and coded again on the way over to where we were. I shouldn't feel guilty that Cole made it out of what he did, but it's hard not to feel heavy hearted.


Also I'm going to put some recent pictures from earlier around noon before we left him resting peacefully.



There is Praying and Then There Is Praying




I want to start with, well not a fresh set of tears, but here come the tears, but happy tears. We are overwhelmed by the love and prayers poured out last night for our Cole Bear.

Before I tell you what happened when the call went out to pray and after that call.
I want everyone to have some relief and joy this morning. I am going to tell you some things that will make you smile and maybe make you laugh and probably do the laugh/cry because you are relieved.

Last night Cole was knocked out with his sedation and pain killers and he tried to tear his breathing tube out so they restrained him. Cole was out of it and the nurses were saying "he's a wild man, we can tell he is going to be wild when he is awake." Matt and I smiled, they have no idea what they are in for when he is up and about.

Late last night after they got Cole stabalized they were able to extubate Cole. They thought in his case it might be better if he tried breathing on his own. After they took the breathing tube out he said in a croaky whisper "want juice." For us as Cole's mommy and daddy to hear that, we knew our little man must be doing a lot better! Around 11 he asked for Thomas and G (Tom and Jerry) and then we really knew he must be getting back to himself. Auntie K went to Walmart late last night (thankfully they are 24 hours) and I think bought every Tom and Jerry DVD they had!

Matt and I stayed down the hall from Cole. We were not planning on staying because we all didn't expect Cole to do what he did. Matt went home to grab a few things. They handed us a key. It was not like when Chris Harrison from Bachelor/Bachelorette hands them a letter and key to the fantasy suite, but we were grateful for anything to stay close to Cole!

One of my sisters, my little sis Izz described, how a lot of us felt and feel today. "I cried so hard and so much and prayed so hard, it felt like a cry hangover this morning."

Girls from Cafe Breakaway I don't know if I will be able to look at you for a long time without crying everytime I see you.

Everyone from people who don't even know us or Cole and to people that have known us for a few years to people who have known us our whole lives stepped up last night for Cole and for us. We felt waves of these prayers last night.

Pretty soon it's going to sound like I'm up here for an Emmy Award with the thank you's. First I'd like to thank God and then.....................not really but we truly do want to Thank God and every single one of you for praying and praying hard. I don't even know if it's so much how hard we prayed because I couldn't do anything but watch and didn't know what to pray. I just kept saying "please help" and get to the point where I knew something was really wrong and at one very low point acceptance just came in and I said to God "so this is what it feels like to see you take our baby back.".....................Indian Giver. No, I was respectful, I didn't say that. It's a weird thing to believe what you believe as a believer and on the other side how you feel as a mommy. As a mommy and daddy we were and aren't ready to let go and never is any mommy and daddy ready to let go.

Anyways this morning I went up to 6th floor in Levines CVICU to Room 5 and it was empty. I turned around and just said Cole Griffin and she smiled and said "oh he's down the hall." Another nurse showed me around the corner and down the hall where room 9 was. I didn't know what to prepare myself for and when I walked around the corner my eyes popped and my mouth dropped. I couldn't believe the same Cole from last night was in front of me this morning. He was sitting up and had had some juice. His nurse said "we are not friends (her and Cole) right now because I have been messing with him." She said he had removed his IV on his own so she asked Dr. Watts what she could start removing because Cole Trouble Griffin was going to remove it himself.
Cole is very drugged so he didn't know who I was at the moment. The nurse had blonde hair and had said earlier she was standing in the corner while another nurse took care of some stuff on Cole and he looked over at her and said "mommy" and started crying. Yes, more tears right now from me (mom) just typing that.
He just wanted juice and more juice. Matt is upstairs with him right now as I try to gather thoughts and try to put myself in all of your shoes being on the outside wanting to know and seeing it through our eyes.



Now I will tell you what happened yesterday around 4. We had not been in there long after they had moved him out of surery into CVICU when Cole's heart rate started rising. He had a temperature and that makes your heart beat faster too so they had ice around his head and neck and in his "hospital pants" buzz and woody pull up. We got his temperature down and we removed the ice, but his heart rate was getting higher and higher, he was up to 200 BPM for a long time. Blood pressure kept dropping. All the sudden there were 8 to 10 cardio nurses, doctors. One of the cardiologists was Cole's cardiologist. Matt and I knew something was really wrong but I kept saying if he's that close to dying they wouldn't let us stay. They did an eco and it wasn't showing what they thought might be the problem. They thought there might be too much fluid around the heart or a block in the fenustration (sp).
This whole time you have never seen so many syringes of medicine being pumped in and everyone is moving and doing and discarded things are falling where they drop and it's very controlled chaos. Matt and I are sitting there like statues afraid to move, or ask anything. I am not a medical girl but I knew enough to know that it didn't look good for Cole and I entertained the thought that he might not make it, but I just kept thinking they wouldn't let us be in here if it's so close. I would have moments where I couldn't cry and wanted to. Then I would go to cry and would suck it up because I was afraid I couldn't stop. We did this for 3 or so hours watching Cole's monitors go the wrong way until his blood pressure was 40/over something in the teens. Very slowly after 7pm Cole's monitors, little by little, started showing his heart rate come down, his blood pressure start to go up one number at a time.
Around 7ish our amazing head nurse thanks everyone for coming to her rescue and Cole's rescue. Matt and I still had no idea how close we all came to losing Cole. One of the nurses came up to Matt and said I can't believe you two sat there calm like you did and watched us do this and watched your son do that. What were we going to do? We would have only messed them up from saving Cole by getting in the way.
Later our nurse told Matt that Cole "pre-coded" and she was getting ready for him to code.
So for all of us, and I mean, all of us wether you were here or in your home or across the United States, we didn't know how serious last night was, but God decided in favor of so many prayers. I don't know why or why us and why Cole, but we can't even say we are thankful. We are beyond thankful. We have been with families over the years up here that don't get such good news and don't get to take their little one home and they have prayed and people across the nation have prayed and we have prayed and they don't get to keep their baby.

We will take today and this minute and make the most of it because God has each breath in his plan. It doesn't mean that a part of us still isn't hesitating letting our guard down because of what Cole did and they said could do again, but we don't want to waste time with him or eachother focused on that part.

We love you all and we couldn't have done last night without out all of you pouring your hearts and prayers out. I need to get back and see our Cole Bear. Matt probably thinks I skipped the country by now:)

Wednesday, September 22, 2010

CVICU - Please Pray for Cole

WOW (*wiping a tear*) That was tough to see and hear.

Laura and I just visited Cole for the first time, and he looked great. After all, he looks like his daddy, right? However, he is still fighting some pretty serious obstacles.

First of all, his blood pressure is very low, so they are medicating him to try to bring his BP up to normal levels. Low blood pressure can cause some serious issues when recovering from surgery.

The second issue is that he is running a temperature of about 101. They have ice packed behind his head and in his diaper (sorry buddy!) to bring his temperature down. I guess he won't need that wheelbarrow anymore for those watermelons he is used to carrying around.

Another issue is that there is more discharge (ie...blood) draining out of his chest than they like. They have not given him any blood yet, but have some ready if he needs it.

Last but not least, they have given Cole some "paralytics" to keep him sedated and still because even though he is on a ventilator (breathing machine), he is breathing on his own over the top of it. In a way, that is great because it means that he is fighting, but until everything is where it needs to be, he needs to remain still and let the machine breathe for him.

Some of the terms we have heard are:

"he's doing O-KAY, but not great"

"we have had to intervene a LOT"

"he might have been coming down with a cold before his surgery because we have had to drain a lot of mucus out of his lungs"

"we need to get him where his heart can function on its own and right now WE ARE NOT CLOSE to that"

There are others, but suffice to say that he/we still need your prayers! Just because he made it through the surgery does not mean that the recovery is without risks. He is only halfway through the battle and it is tough to celebrate winning the first half when you don't know what the second half involves.



*WARNING: the picture below is disturbing and shows what a child recovering from heart surgery looks like. If you are easily offended or have a weak stomach, please do not scroll down. Laura and I want to document the good and the bad and have done that all along, so if you are interested in the "real world" of all of this, this is what it looks like.

>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>




























"Everything Went Well"

No sooner did those words come out of Dr. Watts' mouth, did the burden of relief evacuate from Laura and I's shoulders.

Dr. Watts met with Laura and I at 1 pm today and said that Cole was fine and that the surgery went very well. No surprises, no reactions, no strokes, etc....

We are waiting to see Cole - he will be in the CVICU (cardiovascular intensive care unit) and will have LOTS of wires and tubes attached to him. We will take pictures as soon as we can see him.

There will be warnings about pictures that will be tough to look at. Not everyone wants to see the reality, but some do, and we want to document this event for us.

More updates later....

Cole's Surgery - Part 3 (FINAL Surgery)




MORNING BREATH
When I entered Cole's bedroom at 5:10 am and touched his blonde head, he happily looked up and wanted to know the whereabouts of his trusty friend. No, not mommy or daddy, but rather, Buzz Lightyear. "Buzz?" he said. When I assured him that we had Buzz he wanted to know about his sidekick, "Woody downstairs?" When he was assured that we had Buzz and Woody, he laid his head on my shoulder and relaxed. His breath smelled bad, but I did not care because his warm head and body felt so good snuggled up to me. You never appreciate morning breath until you realize that it might be the last time you smell it from a child.

In the car, a CD was playing, and it played the Bob Marley song that sings "Don't worry....about a thing....cause every little thing is gonna be alright." Not that it has any spiritual meaning, but I thought it was cool nonetheless. So, since Bob Marley was playing....Laura and I decided it was time to burn some mary jane. :-) Obviously kidding.

CHECK IN
Once we arrived at LCH, we were escorted up to the 5th floor where we met the nurses that will be caring for Cole. Also, Dr. Watts (THE man...THE surgeon) stopped by and said hello and said that Cole looks ready. Cole's daddy immediately returned fire and quizzed the brilliant Surgeon with the question "How do YOU feel Doc?" He looked up from his tablet, smiled, and said "I feel great...plenty of rest and ready to go."

The one negative to this check-in procedure is that we are asked the same 4-5 questions literally 15 times. "What is his birthdate? Any allergies? When is the last time he ate or drank anything? What medicines is he on? How did he respond to the anesthesia before?" This is a good thing, and normally this would make my impatient "New York City" persona arise, but in this case we want them to be thorough.

Then, after all of the questions, it was time to hand over our little boy. He was snuggled against me and was almost ready to fall asleep, but then I stood up to hand him over and he clenched onto my neck and started to protest. After we told him it was ok, he trusted us and went right over to the nurse who cradled him in a warm blanket. The blanket had been placed in a dryer because it was so warm that Cole just relaxed.

As soon as I started to think to myself "wow, this wasn't that hard at all," I glanced up and saw Cole looking over the nurse's shoulder at us with trusting eyes (not crying...not fussing...not complaining). As we watched him disappear down the hallway, we shed a tear or 5 and then went into the 5th floor waiting room so that we could write this update.

It is not 7:06 am and we just received word that Cole is in the operating room. The clock starts now on his next 4-5 hours of surgery/tribulation.

More updates as we receive them.

Monday, September 20, 2010

At Home - One MORE to Go!

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.

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.

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.

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!

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!

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!