Our Sixth Post; Game Changer

I believe I am in a better place today. For all his surgeries I am usually calm, cool and collected but for this upcoming surgery, my mind has gotten the best of me. After finding out we were changing our original plan (removing the old pulmonary artery and valve for new ones) everything I was "okay" with, just kind of fell apart in my head. I wasn’t able to talk myself through the procedure and it make sense to me or to Travis.

So yesterday we had a meeting with Ayden's surgeon. My parents, Travis and I met with Dr. Mendeloff at 2pm and discussed in detail what he will be doing. I have included a picture that shows what will be done but I will also describe it too. I hope everyone will understand it - but I know it is very complicated.

First, Ayden will no longer need a pulmonary valve and conduit. Dr. M will be closing up that opening into the heart and removing the conduit and valve entirely.

Second, since the Tricuspid valve has never grown since Ayden was born and since there are not mechanical valves small enough to replace it with, Dr. M has decided it is best to go ahead and close up the valve for good. He will re-route the blood that comes in to the right atrium from the lower part of the body by using a long Gortex tube (a graft).  This will be attached to the Inferior Vena Cava below the heart – reach across the heart and be connected to the Pulmonary Artery – close to where the former pulmonary conduit was connected.  Once this Gortex Tube is in place the whole right side of Ayden's Heart will be shut off permanently. It will still be viable – blood vessels will feed it – but it will not control the blood-flow from his body into his lungs.

As for the muscle that separates the two bottom chambers, Ayden already has a small hole in the very bottom that lets to two different bloods mix. Once Dr. M stops all the blood from coming in to the right Ventricle he may open up another hole to keep blood from building up too much pressure. He will make that decision once he is already in surgery.

On a more positive note, if Ayden adjusts to this new way of blood flow and shows positive signs that his body likes all these changes - then there is a good possibility that Ayden not have to have another Open Heart Surgery. The Gortex tube will be large enough to last through adulthood. Of course he will have some routine maintenance as he gets older and will always have check-ups.

It is hard not to get our hopes up - but we have never heard that before so I am just keeping every piece of me crossed that Ayden does well through this surgery and recovery.

His surgery is still set for next Wednesday the 7th. Surgery will probably start around 8 am or 9 am but we will find out the exact time the day before during his Pre-Ops.

Please don’t forget to put your email down at the very bottom of the blog so you can get the update sent to your email instead of checking for updates.

Our Fifth Post, Pictures From the Beach

We are HOME!! Wish we were still there because it is one of the best places we as a family can go and have tons of fun all day every day. The kiddos saw Dolphins and snorkeled and we went out to dinners and played in the sand and HAD A BLAST. Here are some pictures from the week. (If your wondering who the other kiddos are in the pictures and other adults are too, we always meet up with some very close friends of the family and spend the whole week together. They all have kids around the same age as Makayla and Ayden so the kids really can get adventurous.



This is all of the kiddos that came with our group.

The Adults enjoying the afternoon

We rented some boats and headed out to Crab Island one day

Ayden stayed at the front of the boat the whole way there and back

All-in-all it was a great trip. Travis and I did hear back from our Cardiologist and our surgeon on the issue with his Tricuspid Valve last night. They are both agreeing that they need to completely get rid of the Tricuspid Valve by sewing over the whole valve so it is no longer functional. This valve will not grow and it's too small to be replaced with a mechanical valve. This means that Ayden will only be functioning with one side of his heart from now on. To keep the non functioning side from dieing, it is my understanding that they are going to be removing the patch they gave him during his first surgery that separated the two bottom chambers. This will allow the blood to flow freely back and forth in the bottom chamber to prevent the muscle from dieing. Here is a diagram.



Surery is still set for September the 7th but are still going to be doing tons of fun things till then. Ayden will be joining Bart Crow more of some Texas Country Signer at Billy Bob's Texas on Monday, September the 5th for Pickin for Preemies. Ayden is a huge Texas Country fan and plays his guitar all the time. Excpecially to Bart Crow, Joey Green, 1100 Springs and he has just found a new love for Max Stalling.

We are so thankful to be able to do this for him. I just love to catch every single smile he has on his to offer and this is going to bring a big smile to his face.

Our Fourth Post, The Beach

We have been having a great time here. Ayden and Mak are having a blast. I can't figure out how to post pictures from my phone in here but as soon as I do I'll post some.

Our Third Post (Doctor's Visit and Vacation)

We officially got the OK from Dr. Kao to go on vacation. She thought everything looked fine for now and she has no worry about him being gone. He is pumped!!

                                               

During the appointment the Echo showed that his leakage was worse. After his Echo, the Cardio, Dr. Kao told us, she did not like his Tricuspid Valve (always been a problem).  Dr. M. (Surgeon) has been waiting for the valve, his heart and Ayden to grow before he did anything.  And when we talked in Dr. M in May he was not wanting to do anything to the Tricuspid Valve.  He thought that with the new pulmonary artery and valve - between the two valves he would be okay.  But something might have changed - Dr. Kao said it is just too small and not working well at all.  Well, the problem is, Ayden's body does not like these artificial "tissue" parts and it has rejected them all.  So we will be just asking for more trouble (we think).  The alternative is a mechanical valve and they are HUGE. So we are waiting for Dr. Kao to talked to Dr. M and see what they decide.  My guess is they won't do anything this time.  The other alternative is the fontan procedure where all the blood is redirected from the right side of the heart permanently.  No one wants to see that happen - at least not yet!  I have added a picture of the two thing that might be happening during the surgery.

The long blue tube in the middle is what they are defiantly taking out and the Tricuspid Valve that I have circled is what is too small and not sure yet if they want to take it out or not tohut it off all together. We hall see. In the mean time....... WE'RE GOING BACK TO THE BEACH!!!