Surgery is finally done....

Colin finally got out of surgery around 7:30 pm. It was another 6 hour procedure. Dr. Bacha had to go into both the front and side incisions again to get out the clot and gather the collaterals. He did end up shunting those collaterals to Colin's aorta. Although this doesn't help lower the right ventricle pressure, it will help the collaterals grow that are off in the lung. Then in a year Colin will have another surgery to hook them up his heart directly, as they tried to do 2 weeks ago. The shunted the collaterals because the believed that they would clot again because they are so small. Colin is looking very pale right now and bleeding a lot because he is on a lot of blood thinners so he doesn't clot. He will be getting a blood transfusion soon. We will update more tomorrow on the progress.

A smile.....

Today, we got Colin to smile quite a bit after the drugs wore off after the cath. I was able to get a quick video of him smiling as you can see. Have you ever seen a child with a breathing tube down his throat smile? With all of this going on, he is still in a good mood.

PS - They keep saying that the red dot on his head is getting smaller and will go away. It better......

Surgery Update.......

Well it is official that the surgery will be tomorrow to remove the clot. We just spoke with Dr. Bacha and they will remove the clot and either hook it back up or put a shunt in. Yes the shunt doesn't reduce the pressure in the Right Ventricle, however it will help the collateral arteries in the lower left lung expand as it will provide higher pressure to "stretch" them out. The other drawback is they would have to complete another surgery in 1 year or so to the hook them back into the heart and remove the shunt. That will be a gametime decision by the doctor. They will being doing a cath while they are doing the open heart. The other issue is he has to look weather he should go through the chest or back or both.... I will post again tomorrow when final decisions have been made.

Well we hit a big pothole in the road......

Colin is out of his cath and doing well. He was in there for about 2 hours. It was much quicker than we expected so we knew something was up. They noticed that a bloodclot formed just past the conduit that they put in during the surgery 2 weeks ago. They are not sure exactly why it clotted but do have to do something about it, soooooo, he is going back into surgery tomorrow morning to remove the clot. They are also going to either do a cath during the surgery or a day after the surgery. That is to be determined. We have not yet talked to Dr. Bacha yet but he was in the cath lab when it was completed. He had another surgery to go to, but will stop in later so I will have more specific details later. As our Syracuse Dr. mentioned, we hit a pothole but we have not bottomed out the car yet.............

Quiz of the day.......True or False......Colin has had more drugs go through his body than Keith Richards, John Belushi, and Eric Clapton combined?????

Wednesday Update......

Sorry for the delay in the updates. It has been a crazy few days. Well Colin just went back to the Catheterization Lab beacuse they noted in a lung scan that there was very little, if any, blood flow to the lower left lung. They are going to go in and try and open the narrowed vessels. The doctor said that this is a riskier cath due to the extent of work that they are going to do, and there is the possibility of tearing an artery, which would require immediate surgery. The good news is Dr. Bacha will be on standby to do so. Hopefully they can open the vessels up to allow blood to the lung so that it can reduce the pressure on the lower left side. I will update as the day goes on.

Still on the Vent....

Colin is still hooked up with the breathing tube. They completed the bronchostomy yesterday and did find a lot of mucus plugs which block the air from fully getting into his lungs, however they did also note a compression on the left lower bronchus. They were trying to get a CT scan of the area to see if it is because something is pressing on it or if it is just inflamed. If something is pressing on the area, there is a good shot they may have to go in and move whatever it is. Having said all that, his lung looks 100% better than it did yesterday morning and they continue to pull out good mucus plugs. A CT scan is scheduled for tomorrow so we will update then.

Another Step Back......

Well yesterday the CPAP machine did help open Colin's lower left lung lobe, it closed again overnight so they decided this morning to put the breathing tube back in temporarily. This time the tube is going down his mouth. Right now they are getting ready to bronchostomy. They have been pulling up a lot of junk from the breathing tube. We will keep you updated on todays events.

On another note - Please send some of your prayers for a child in the next room to us in the ICU as he was just put on an ECMO Machine, which is a portable heart lung machine.

Minor Setback...

Colin suffered a minor setback this morning. The upper part of Colin's left lung collapsed so they had to put him on a CPAP machine as seen in this photo. The latest chest x-ray shows that it is improving so they shouldn't need to put a breathing tube back in. Colin still has a fever which reached 103 degrees today but they don't think it is a staph infection. Might be just some type of bug.

Breathing Tube is Out!!!!

Today they took the breathing tube out and he is doing extremely well. All of the doctors are pleased with how much progress he has made after such a difficult surgery... As you can see he is even taking some pedialyte by mouth. The doctors remain very optimistic.

Monday Update....

Colin had a nice and quiet weekend. He is moving and opening his eyes now however the breathing tube is still in. Today they are going to be backing off the morphine to get him to wake up a little bit more and take deeper breaths so that they can hopfully take the tube out tomorrow. This morning they took 2 of the 3 chest drains out. They think the other can come out tomorrow. Slowly but surely he is getting better and will soon be back to his old self again. They are increasing his feeds to full rate today as well. Hopefully he will tollerate it. Thanks again for all your comments as we really enjoy reading them.

Chest is closed!!!

Today, Dr. Bacha closed up Colin's chest because he was doing so well. Everything went smoothly and he is beginning to look like our little boy again. They are going to start removing the paralytic drug and then shoot to remove the breathing tube within the next day or so. The doctors continue to be happy with his recovery.

Surgery Photos.....

Well Colin is doing well and the surgeon was very happy with how well he actually is doing. They have him currently completely paralyzed so he doesn't move since his chest is open. Colin is breathing 100% on a ventilator until they close the chest. He has a slight fever so they have been cooling him with ice.

Below is a poem that we were handed when we arrived by a group of mothers who have kids born with various Congenital Heart Defects....The group is called Helping Hands Healing Hearts and they are a support group for RI and MA families. A link to their website is http://www.riheartgroup.com/. We thought this poem summed everything up extremely well and we thought the parents following the blog with heart children would enjoy it.

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on my shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There is stats that I could give…
But I would rather share with you…
A mother’s perspective.

What it is like to have a child with a CHD?
It’s Lasix, aspirin, Captopril….
It’s wondering…Lord, what’s your will?...
It’s monitors and oxygen tanks…
It’s a constant reminder…to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating….and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need…to help him grow strong…
It’s making a hospital…home for a while…
It’s seeing my reward…in every smile.
Its checking his sats…as the feeding pump’s beeping…
It’s knowing that there…is just no time for sleeping…
It’s caths, X-rays and boo boos to kiss…
It’s normalcy…I sometimes miss…
Its asking…do his nails look blue?
It’s cringing inside….at what he’s been through.
It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound… and hand sanitizer…
It’s knowing this journey…has made me much wiser.
It’s watching him sleeping…his breathing is steady…
It’s surgery day…and I’ll never be ready.
It’s handing him over…(I’m still not prepared…)
It’s knowing that his heart…must be repaired…
It’s waiting for news…on that long stressful day…
It’s…praying….it’s hoping…that he’ll be okay.
It’s the wonderful friends…with whom I’ve connected…
It’s the bond that we share…..it was so unexpected…
It’s that long faded scar…down my child’s small chest…
It’s touching it gently….and knowing we’re blessed…
It’s watching him chasing…a small butterfly…
It’s the moment I realized….I’ve stopped asking….why?
It’s the snowflakes that fall…on a cold winter’s day…
(They remind me of those…who aren’t with us today)
It’s a brave little boy…who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember…we are all in this plight…
It’s their lives that remind us…we still need to fight!
It’s in pushing ahead amidst every sorrow….
It is finding the strength to have hope for tomorrow.

And no…we’ll never be the same…
It’s changed our family…
This is what we face each day…
This is…a CHD.

By Stephanie Husted

Done at Last.....

We just talked to the surgeon about how the surgery went. Dr. Bacha told us that the surgery results (short-term) are better than expected and that it was more tedious than he expected. Colin's chest is still open and will probably be closed either Sunday or Monday. He was able to fully hook up the left lung without a shunt and change the conduit. Pressures have already dropped in the right ventricle. Now hopefully his body will accept the changes. He did mention that Colin will probably undergo another catheterization to open the narrowed lower left lung arteries that he could not get to. Stay tuned for some photos post surgery.......Thanks for all your prayers.....

Still Going......

Colin is still in surgery....We haven't seen him in 8 hours, however we have been getting updates. Last we knew, they finished up with his back and had put the incision down his chest. They had also just put him on the heart/lung machine and was doing fine.....We should get another update soon...........

Update.....

Ok, so we have had some technical glitches with the Ol'blog. The hospitals wireless network blocks me from getting to the blog as the same for where we are staying, so that is the reason for the delayed updates. Anyways here is the summary of the past few days.....

Tuesday - Colin had a heart MRI and Cath. The cath took approximately 3.5 hours as they did a lot of balloooning of the arteries to the upper left lung. It went well and was successful per the Dr. They were also able to gather all the information needed to determine the surgery for Thursday. Here is a picture from the recovery from the cath..

Wednesday - A day of recovery and meeting with the Dr's. We met with Dr. Bacha, who will be completing the surgery. The plan is to connect the lower left lung to the heart and change out the current conduit that is in place as it has a severe leak. They are also going to rearrange some of the plumbing to the lungs to help the flow to them. The goal of all of this is to reduce the pressure in the Right Ventricle because it very enlarged.

Today - Colin was taken into surgery around 7:30 and has been there since. We heard from the nurses that they have started cutting open his chest. This was the last update received and the next update will be when he goes onto the heart lung machine....... Stay tuned.....

Hello Fom Frigid Boston - Day 1

Well, today is finally over and it was a long day..... Colin is actually at the hospital tonight because when they completed the sedated echo, Colin didn't feel like waking up so the decided to admit him tonight. It really isn't a big deal since we have to be there early tomorrow. Today went extremely well as we didn't have to wait for more than 5 minutes at any given test. This facility is so well run and organized. We met with the Cardiologist who is following Colin's case here. His name is Dr. Freed and comes with an impressive resume. He is a professor of pediatric cardiology at Harvard, so we feel like we are in good hands. We especially liked what he had to say when he walked in and was confident that they could make Colin better and get him off his oxygen and diuretics. He discussed Colin's situation with us and basically said they are going to wait and see what the MRI and Cath shows tomorrow before they decide on what surgical intervention they may complete on Thursday (if at all). Colin does have very little blood flow to the lower left lobe of his lung. They have also noted that there was some narrowing in his right lung arteries and upper left, and that is where they know they can go in and open via Cath proceedure. When they are in with the Cath, they will be able to tell if they can hook the lower left lung up, either naturally or with a shunt. Overall, however he was very positive about his situation so we are praying that the positive vibe will continue. So to recap the day, it was an action packed day with the following positive events:

• It took one stick to get the blood.
• Colin was in a good mood and cooperative.
• It was sunny out all day (only 15 degrees however).
• The staff was extremely friendly.
• Doctors are positive about the outcome.
• We met another child, 3 yrs old, who has the same heart defect as Colin, and you would never know that he had a heart issue.

Well that is all for today. Sorry there is no picture for you all to see, however I forgot my camera back in the hotel room. I will try and get a picture tomorrow. Once again, thank you all for your love and support. Mel and I love reading the comments at night.

We've Arrived!!!!!!

Well, we finally arrived in Boston after a 5 hour drive. We have scoped out where we need to go tomorrow while there was no traffic. We are now holed up in the hotel room as it is going to start snowing any minute. Tomorrow's agenda includes:

• Sedated Echocardiogram


• Lung Scan


• EKG


• Bloodwork

It should be a packed day as we have to be at the hospital at 7:30 am. At night, Godfather Brian and my buddy Jason are stopping by to bring dinner. We will keep updating the blog as the week progresses so check back often. By the way...Thanks to all the families across the country who have left notes of support. We appreciate all the prayers......

Fresh Photos

Just chillin and singing to the Wiggles........

"Daddy, can I help you with your work?"

Is it me or does Colin look like a sneaky son of a gun.........

Look, no nasal cannulas......This is what I will look like post surgery..... PS-He is back to hanging his tongue out like Mike Jordan.....or David Wright.......

Boston.....Here we come!!!!

Well we heard from Boston today and Colin will have a packed schedule next week. The plan is as follows:

Monday - Pre Op Testing

Tuesday - Heart MRI and Heart Catheterization (including stenting)

Wednesday - Recovery

Thursday - Open Heart Surgery

Please pray for Colin next week.......