Meeting with the surgeon...

We met with the heart surgeon this morning and he said that we don't have to move the surgery up, so we are still on the 9th of October.  I have mixed feelings about that, because a part of me wants to get it behind us... while another part of me feels like it's still not real yet and not having the surgery keeps it that way...

In the past 8 days when I look at Barrett, I think to myself, "How does this hyper little boy have a heart problem????"  The surgeon was able to explain to us why no one has caught this problem until now.  As mentioned in previous posts, Barrett was born with this (its a congenital heart defect), but the murmur was only detected at his 4 yr old well check.  As the surgeon showed us the CT scan, he pointed out some enlarged veins that have been compensating for the coarctation of the aorta.  The aorta takes the oxygenated blood to the lower body and vital organs, including the liver and kidneys.  When the aorta didn't do it's job, some of these 'bonus' veins stepped up there game to help out!  (these are layman's terms, of course)  :)  Basically, Barrett's body has been covering up the symptoms, but after 4 years, these parts are getting tired and they started to reveal that they needed repair. (again with the layman's terms)  After the repair is complete, these additional veins should go back to their regular size.

We were very comfortable with the surgeon, Dr. S.  He is a younger (but not too young) doctor with children of his own.  Dr. S. said that he would treat Barrett like his own child and he will take good care of him.  That is where I got a little teary-eyed.  :(
He told us that he can't make any guarantees and he is required to tell us the negative things that can happen with the surgery, but I won't go into those... we are staying positive that all will go well.  He said that there is a 5-10% chance that Barrett could require additional surgeries in the future.  I feel like those chances are fairly low.

Dr. S. is going to continue to review the scan and he will let us know if he decides to change his course of action, but as of right now, here is what he is planning on doing:

• He is going to make the incision on the left side (through the ribs).  This way Barrett doesn't have to be on a heart-lung machine
• He is going try to cut out the narrowed portion and re-attach the thicker portion of the aorta.  Younger children still have a lot of elasticity in there to work with
• This is Plan A

The scans are very accurate, but nothing is as accurate as getting inside and seeing exactly what Barrett has going on, so he did prepare us for Plan B:

• If Dr. S. is not able to stretch the aorta (if the narrowed portion was too long), then he will have to place a patch in between.  This should grow with him, but if it doesn't it would need to be replaced in the future

And Plan C:

• This plan will only go into effect if Dr. S. feels like the arc of the aorta needs to be repaired.  Right now, that section is smaller, but Dr. S. feels like it is large enough to have a steady flow of blood and should increase in size once the narrowed section is repaired. 
• Plan C would involve an incision down the middle of the chest and it would require Barrett to be on the heart-lung machine.  I honestly don't know what a heart-lung machine is, but I don't like the sound of it
• Dr. S. should know for sure before the surgery, but if he has to make the call during surgery, he said he would come out and tell us

The surgery should last 2 1/2 - 3 hours.  Barrett will be away from us for a total of 6 hours.  We won't find out the exact time of surgery until the day before, but I have a feeling that they will pick 6:00am, because they know how much I LOVE mornings (sarcasm).  Barrett will be in ICU for 1-2 days and then in a private room where they have a fold-out bed for us to stay with him.  From the sound of it, he will probably sleep the majority of the first day.  Dr. S recommended an epidural catheter to manage the pain.  I imagine that we will do that for him.  As a person who has had an epidural, I know I love them.   :)

During the surgery, they will have to clamp the aorta, which will cut off the blood supply to the liver, kidneys, lower extremities, etc. for 30-45 minutes.  Of course there is risk involved in this, but the good thing is that because Barrett's body has already been trying to re-route the oxygenated blood to these areas, he might not be fully cut off!  This is a VERY good thing.  Some of the negative side effects due to the lack of blood supply during this time are normally reversible, but if you never have to deal with them to begin with... that is even better!

The recovery time-frame:

• Barrett should be able to go home after 7 days (give or take depending on meds, etc.)
• He can go back to school after about 2 weeks
• We will have follow up visits within his first few weeks after being discharged
• He can resume playing outside and participating in PE after 4 weeks
• He can travel after about 4 weeks
• The surgery wounds should be healed within 6 weeks

Dr. S. did say that it wouldn't hurt to have someone check Jayna's blood pressure and do a quick listen-in on her heart, just to make sure that everything is normal.  He said that this is only partially genetic, so that is good.


We have experienced such a huge out-pouring of love and thoughtfulness from so many friends and family:   My mom and dad kept Jayna over-night, so that we were able to take Barrett to the CT Scan without having to disturb Jayna's routine. Thank you Nana and Papa!
My sister-in-law, Rachel is going to come stay with us the night before surgery and take Jayna to school on Tuesday, so that all of the grandparents can be at the hospital when Barrett goes in for surgery.  Thank you Rachel!

The waiting room has these cool touch screen games for kids,
but we didn't have to wait long today, so that was nice....

Happy Barrett!

As we were about to leave, we stopped by this family center that the hospital had.
It has a game room, a music studio, a library, and little cafe-like, named Ray's (my dad's name and Jayna's middle name)
 

After we met with the surgeon, a life counselor came to introduce herself.  She let us know that they will be visiting with us again at the pre-op appointment and during our stay in the hospital.  They will help to prepare us and Barrett for the surgery and I think they help with coping with the surgery.  I like the fact that this is a children's hospital and they seem very focused on making us comfortable and happy with everything that they do.

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On another note: Bonham's grandpa, George is in ICU in New Braunfels.  Bonham is going to make a trip down there to see him this weekend.  George has pneumonia and a blown lung.  He has been intubated and sedated.  Once he is stable, they will move him to a hospital in San Antonio to put a stent in his trachea, which will help to him breathe.  We pray that George will recover and be stronger after his surgery, so that he can go home.  Bonham is very fortunate to still have 3 living grandparents at our age and we are thankful for every additional day with them.