Surgery Plan A and B and C...

And so it begins. 
We had a long day of pre-op excitement which included EKG/Echo/X-Ray and (cue scary music) the blood draw.  At least he got to pee in a cup.  That is pretty fun for a nearly 5 year old boy, right?
We have instructions to arrive around 6:30AM and things will get rocking and rolling right away.  They expect to be taking him back around 7:30.  This time, unlike the cath, I can't go back with him, so with just the pre-med (versed=loopy juice) on board, I don't expect that will be too awesome.  We shall see.  Child life there is amazing, so hopefully that will do the trick. 

Tiernan is in good spirits.  He occasionally expresses anxiety or fear, but gets past it quickly and does not dwell there by any means. 

Tristan is being a great big brother for the most part.  We have purposely kept some details from him but tonight I had to share a bit more than I wanted to in order to impart some perspective and put an end to the arguing.  This is a reality that really sucks.  That's all.

As for J and me.  We are so glad to have my parents here with us for moral support and to take care of Tristan when we can't.  I wish I could express how much this means to me in words, but I cannot.  So you'll have to imagine for yourself.  :)  We are extremely nervous, but we know we are in the right place with the right guy.  My friend Dana (mom of Alex, who had his Fontan with Hanley last year) reminded me that we would be feeling this if we were in Seattle and Chen were doing the Fontan.  These pre surgery feelings are true regardless of the procedure or the doctor.  But we feel completely secure in Hanley's abilities and plans for our son. 

As for the plan for tomorrow:

Plan A: SEPTATION=BI-VENT=4 CHAMBERED HEART
Everyone still feels this is the best choice. 
Currently his Aortic Valve and Pulmonary Valve are combined from the DKS (Damus-Kaye-Stansel).  Dr. Woods did this back in '09 because of his Aortic Stenosis (Aorta is too small). 

reminder visual of Tiernan's current physiology

Now Dr. Hanley believes he can take down the DKS (separate the PA and Aorta) so that the Aorta is of sufficient size.  The acceptable target for gradient (difference in blood pressures below and above the valve) would be around 20.  They consider this a success because if they used a conduit then that valve would have an inherent gradient of around 15 or 20.  So either way, that is okay.  (Obviously zero gradient would be wonderful)
IF they can accomplish this, the next step is to septate the ventricles and AV valve.  (he has the combined mitral/tricuspid due to his AV Canal)  They should be able to do a nice patch to bring the LV to a more normal size. 

PLAN B: SEPTATION WITH RV TO PA CONDUIT
IF Dr. Hanley does not feel his Aortic Valve can do the job, then he will leave the DKS in place and use a conduit that will connect the Right Ventricle to the Pulmonary Artery.  This will have a cadaver valve and will eventually need to be replaced.  The other challenge this adds is to the septation of the AV valve and ventricles. 

This is the best picture I could find to show the RV to PA conduit.  Just imagine the DKS as well. And also realize this was for a kiddo who has transposition of the great arteries (Aorta and PA are switched) 

 



So if Dr. H. has to keep the DKS in place, then he has to patch the ventricles so that the PA is contained within the LV as well as the Aortic Valve.  I know this is probably SUUUUPER confusing, but look at the darker wall that curves behind the conduit and connects up to the side of the Aorta in this picture.  In T's heart that would be the PA.  The bottom line is, if the conduit is necessary, then that complicates the ventricle septation and requires a future surgery.  That is why it is Plan B.

 

PLAN C: NO SEPTATION=AV VALVE REPAIR/FONTAN IN FUTURE

We obviously do NOT want this to be the case.  However, we are glad there is a fallback plan. 

 

Why not just do the Fontan now? 

 

Dr. Hanley firmly believes that Fontan patients recover MUCH better and more quickly if the surgery is done off By-pass.  The reasoning for this is that by-pass increases pressures in the lungs and fontans rely on perfect lung pressures, so he would not want to increase the possibility that he would have a difficult recovery from the Fontan after all of this. 

 

POST-OP EXPECTATIONS

Tiernan will come out on the ventilator and he will remain intubated for at least a few days.  They will keep him in a "medically induced coma" to allow his body to start the healing process.  As scary as that sounds, it is really important for him.  They will likely bring him out a little bit to check on his brain function and then sedate him again.  They have prepped us for all the possibilities that we won't discuss here unless it becomes necessary, but we are going to think positively. 

 

Hopefully recovery will go smoothly and we will be discharged before the end of the month!  But given all of the variables, we are also now considering the possibility that one of us will need to fly back with him, rather than submit him to a 20 hour/multi day car ride home while still recovering.  More on that later. 

 

I am certain I've forgotten some things, but those will make their way onto future updates if necessary.  So for now, I will just post these photos of two brothers who fight constantly but love one another beyond measure. 

 

 

Please send us those prayers and all that good mojo tomorrow.  We feel it.