Thursday, June 26, 2008

"It's Time."

Those were the first words out of Dr. Watts today during our meeting. He told us that it was time to move onto the next stage of "reworking the plumbing in his heart."

The reason? Because his oxygen levels are sitting between 70-75% and under 70%, according to Dr. Watts, is in the "danger zone." Our thoughts were "ok Doc, whatever you say, lets get this show on the road."

These folks are miracle workers with their hands and a scalpel.

The next surgery will involve the simultaneous removal of half of Cole's shunt while "redirecting" one of his other arteries so that it does the job that his shunt has been doing. Easy stuff, right? :-) The other half of the shunt will remain in Cole's heart, but will be closed off. The reason they only remove half, Dr. Watts said, is because it's more risky trying to remove the entire shunt because it's sewn in. Basically, the route Cole's heart is currently using to direct the flow of blood will have "access denied" and the existing artery that will be used will grow along with "Tubbs McGee." This artery will be routed to take blood to his lungs.

We sat and listened as we were told the risks - some "minor" and others "not so minor." We were also told to expect to see Cole's head swollen and eyes swollen after surgery. They will have Cole at an incline (feet down) to bring down this swelling but at the same time, if we were not warned, we would have been freaked out by the sight of Cole "E.T. Phone Home" Griffin. The good news is that there is a 97-98% success rate and we have one of the best pediatric heart surgery teams in the country! Dr. Watts did say that if something did happen that would qualify for that 2%, it would be something major. *GULP*

Think about this for a second: 97-98% sounds pretty good, right? We agree. However, if someone were to tell you that tomorrow when you get up, you had a 97% chance of surviving the day, would you leave your house?

The official date is July 7th, 2008. This is the day that Cole turns exactly 6 months old and it is also filled with some perfect numbers.....7/7/2008...lots of 7's there. Please remember this little Tubbs McGee on that day. Not so much us, we will be ok, but mainly that little "Blue Eyes."

Not really a whole lot more to mention here until the big day. However, if anyone has any specific questions, please post them and we will try to answer them as best we can. We are exhausted after another long day filled with info about our little fella so forgive us if we do not ramble on more tonight.

One more interesting thing...the cost of the "minor" catheterization that occured last week? Try $52,000. So one could either pay for that or buy a new Mercedes. Thank the Lord for insurance. You could say we met our maximum out of pocket fairly quickly. I could see Dr. Stern washing his hands in pre-op and then telling his nurse "Welp, there goes their deductible!"

God Bless and Good Night!

Matt and Laura

Monday, June 23, 2008

Just a short note from Cole

Here Mommy is trying to prop me on pillows and my big ol' head keeps taking me on over and I'm about to go over, but I had fun doing it. I must a have a little thrill seeker in me.

I wanted to say something since this blog is for me. Mommy and Daddy run into people all the time who say not only are they praying but they have sent the blog out to others praying or on to churches prayer lists who are praying. None of us realized that so many we don't even know and will never know are keeping up with Cole and continuing to pray for him. It is very humbling for all of us!

Not every prayer that has been prayed has been answered the way we have wanted at times but I am a product of the power of prayer. Prayer has also kept mommy and daddy grounded when sometimes it's hard to see me go through this, but they know that God has and will continue to help them be strong even if He doesn't and won't take some of these difficult things away.

So again we thank all of you that have stuck with us and been a known or unknown support to us! We will update you after we see Dr. Watts my surgeon on this Thursday. He's going to tell us when the next surgery is.

We'll be back Thursday for an update!
Love,
Cole

Tuesday, June 17, 2008

Heart Catheterization - Tuesday

Laura and I awoke this morning to the glorious sound of her loud, obnoxious alarm clock at 5 am. We struggled to wake up as we staggered around our house in a sleepy stupor. "Why did you guys get up so early?" you might ask....

Well, today is Cole's heart cathererization and we had to have him at the Levine Children's Hospital at 6 am. Basically, today is about putting a camera inside Cole's heart to look around and to take measurements so that they know exactly WHAT they need to do in stage 2 surgery. Laura went in to wake him up at 5:30 am. We tried to let him sleep as long as possible since he was not allowed to eat this morning. His last meal was last night at 8:30 pm so we were a little bit nervous about the degrees of HELL he might raise once he was awake and realized that there was no bottle in sight. To our surprise, he acted like a little angel. His blue eyes were wide awake within minutes of waking up, and he did not make a peep as Laura put him in his car seat to head to the hospital. He had a funny looking "confused" look on his face as if to say "I know these people are not going to wake me up and take me on a trip somewhere WITHOUT feeding me first."

We arrived on time (Praise God!) at the LCH and checked in. Then we were escorted up to the 5th floor (the Children's Day Hospital) to check in. They measured his vitals and his oxygen levels were around 90% (even though he has been averaging 82-84 recently). He was in good spirits and was smiling at the nurses. Then, 2 more nurses came in and started asking questions and we quickly discovered that one of them was being trained. At first, we thought "oh great, just our luck, by all means, bring us the newbie and let us be their guinea pig." Then I remembered being told before that for any nurse to be in this hospital taking care of children, they have to have a lot of experience. Then, she mentioned to us that she used to work in the NICU (she knew our other friends in the NICU) and had 7 years of experience so she was by no means "new." It was almost as if the Lord said to us "see, you jumped to conclusions without knowing....just like you always do." Thanks for that Lord.

When the Q&A was finished, we had to wait for an escort (not *that* kind) to come get us to take us to the area for the Cardiac Cath. We had some time so I decided to get us some coffee.

*off topic*
I knew that they had free coffee in the break room, so I went in there only to hear "we do have a coffee machine, but it is broken." I had to go downstairs to the lounge to get us some coffee. They are supposed to open at 6:30 am, but at 6:55 am they were still setting up - slackers. Anyways, once I bought 2 cups of coffee and got back up the floor 5, the doors were locked. I then proceeded to stand out in the hallway for a good 10 minutes or so until someone walked close enough to the door to hear me banging on it like someone trying to escape a burning house. I finally got in around 7:30 am.

*back on topic*
Shortly after I got back, another nurse came and got us and took us to the Cardiac Cath Lab where Cole's procedure would take place. It was there that we met Dr. Herb Stern. He is very nice and he seemed to know his stuff. He told us that they would need about 45 minutes to set up, then 2 hours for the Cath, and another 1 hour to break everything down. We left Cole around 7:45 am and "how did we drown out our sorrow of leaving him in someone else's hands?" How else, FOOD of course.

We went to Chick Fil A downstairs and ordered a TON of food. We laughed as we heard beanpole after beanpole order Diet Cokes for breakfast. We would laugh and then stuff another chicken mini in our mouths. Just like us Griffins, always eating something.

We figured that since we had so much time to kill, we would stop by to see Amy Petty (Laura's labor and delivery nurse). We wandered around for about 15 minutes trying to find the right floor and wing and once we did, it was well worth it. Amy comes walking down the hall with a mom (in labor) in a wheelchair who was in need of a quick epidural. After saying hello, she said (in a loud southern voice), "ya'all walk with me." We walked with her and her patients (mom and dad to be) as she pushed the "IV drip" pole while turning around and talking to us every few seconds. It was very funny to us....but probably "not so much" to the mom and dad.

FINALLY, we got back to the waiting room and had a chance to sit down for about 10 minutes. Just when we were finally semi-relaxed, another nurse barges in and says "Griffin?" She took us back down to the Cath Lab. Dr. Stern was waiting for us in there (but was still wearing his scrubs and would not touch us, keeping his hands tucked in his patent leather scrubs). He told us that Cole was doing well and his surgery was complete, except that he had some "collaterals" branching off of his pulmonary artery. Imagine the branches of a tree....Cole has too many branches coming off of his pulmonary artery. These are taking more blood to his lungs, which makes his oxygen levels higher (which we thought was good), but over the long term that is not good. The reason is that the blood eventually has to return to the heart and be pumped through, which means that the heart would have too much blood to pump. This causes it to work harder and can cause heart failure, which is "bad.....very bad." The reason they were calling us down is that they had to have our consent to remove these, which we gave them, of course. This explains why his oxygen levels have increased since his first surgery, whereas normally it is supposed to decrease. Dr. Stern said that normally they would remove these bewteen stage 2 and stage 3 of his surgery, but he did not want to leave them for 2-3 years. Also, if left alone, who knows what other complications would happen between now and then. Made sense to us...."since I am in there, I would rather go ahead and take care of these now" he said.

Anyways, it was a pretty big scare because we knew that we were being called back before the estimated time had passed for his surgery. We knew that it would not be good news, so it was just a matter of how BAD the news would be. All things considered, it was good news. It was better to catch this now rather than later. If it had not been caught at all, it would have ultimately led to heart failure. This TYPE of thing is exactly why they do the Cath....the camera can find things that cannot be seen on the Echo.

Cole should be out of surgery in the next 1-2 hours and we can go see him. Also, we might meet with Dr. Watts later on today and talk about the timing of stage 2 of Cole's surgery. We might actually get a date!

Anyways, more updates as we get them. Keep praying!





Being called back now....will update soon.

Monday, June 9, 2008

Cole's First Family Vacation

Memorial Day week was the annual family beach vacation. This was Cole's first experience and he did better than any of us. Here are just some updated pictures and a few extras of Ava and family.




Tubs McGee and Mommy






Cole finding more love with Gigi and PawPaw




Gibi and Cole falling in love




Duard and Cole having a little man to man.






Ava taking care to make sure all daddy's parts are covered.


Shepherd and Ava showing eachother how it's done





Our sweet baby Cole!

A short update on Cole real quick. He is going in for his heart catheter on June 17th. We have to be at Levine Chrildren's Hospital at 6 a.m. It could be staying the whole day possibly overnight. The doctors will be checking to make sure Cole's lungs are mature enough to move on to his second heart surgery. If Cole's lungs are developed enough it will just be a matter of when Dr. Watts has an opening in his schedule. It might be as soon as the end of June or very beginning of July. Cole has done so well and that is why they are moving forward early with his next surgery as long as the lungs are ready.

We don't take your prayers lightly or for granted. Thank you for continued prayer!

Love,
This Griffin Family