Time to Meet the Surgeon

Arianna waiting to see Dr. Teodori.

Passing the time coloring with Daddy.

We had the pleasure of spending time with Dr. Thompson before Dr. Teodori came in. He answered all of Arianna's questions, which she was really happy about. They will try to extubate her before she wakes up and no NG tube!!! Made her one happy girl! She was extremely nervous as the appointment went on but I think she handled it very well.

Dr. Teodori came in and went over the specifics with us. There was one BIG surprise that I will talk about first.

1) Last year when she had her heart cath it was to check for Pulmonary Branch Stenosis because the MRI showed different percentage of blood flow to her lungs. The cardiologist went in and within 30 mins came back out saying she was fine. Apparently Dr. Teodori checked her cath images and she indeed DOES have pulmonary branch stenosis and needs surgical repair. There will be phone calls going on tomorrow to get to the bottom of this. They could of ballooned the branch stenosis and decreased the pressures in her heart so she would not be needing heart surgeyr right now. Plus, the surgeon said her heart might be past the point of being able to go back to normal size which means permanent heart damage! Yes, I'm pretty upset about all of this!

So this is the best diagram I could find to show the branch stenosis at the PA (pulmonary artery) We are praying this stenosis is just at the beginning and not down towards her lungs cause that complicates things alot. This picture also shows the transannular patch which is something they did in her first surgery.

2) They do not know what defect she has in her tricuspid valve and will not know until they get in there. It could be one of two things: A) a hole in her valve that just needs to be stitched closed. B) Dilation of her valve, which would require them to close the diameter as a repair. This would not be good cause they would have to go in and fix it as she outgrows it.

This means Arianna's official diagnosis includes 7 heart defects: Tetralogy of Fallot, which includes the first 4 listed: Ventricular Septal Defect, Overriding aorta, pulmonary stenosis, right ventricular hypertrophy WITH atrial septal defect, pulmonary branch stenosis and an unknown tricuspid valve defect

3) The part of the surgery we did expect and have been waiting on for 5 1/2 year is the pulmonary valve. She will get a CryoValve SG (synergraft) Pulmonary Valve seen below. The First And Only Decellularized Human Heart Valve Cleared By The FDA.

Dr. T feels he could put in a large adult size valve at 27mm which is really big. The question I asked next was what most TOF parents are asking. Will she be a candidate for the Transcathetor Melody Valve?  The answer to that is NO! The valve needed for the Melody valve is alot smaller. Dr. T also does not feel the Melody valve is a good option at this point in time. It is so new and the research to back it is very minimal. The patients who have had it done are experiencing problems about 5 years post-op. The thought is to go ahead and put another melody in which will compress against the first and so one with multiple valves this way. As you can imagine over time that will lead to a smaller diameter and eventually open-heart surgey to remove it all together and place the valve seen above. The human valve is exepected to last a little over 10 years, which is great news! Then at that time she will need another open-heart surgery to replace it again.

I know it may seem like a difficult decision but really for us it's not. The Melody Valve is too new and not much research to back it. We know science is advancing every day and in 10 years they will probably have a better transcatheter approach we could take advantage of them. For right now, this is the safest procedure and we plan to move forward with Dr. T's approach.

We left feeling very confident about the surgeon and the direction we are headed. We will do whatever we have to do to ensure out little girl lives the healthiest life possible! Dr. Teodori was amazing and took the time to explain things to Arianna about what to expect after the surgery. Of course she was very scared and wanted to be held the entire time after.

She wanted to stop by the PICU to see if her nurse Kam was there. She wasn't so we left our number and hope to get her as our post-op nurse again this time around! We noticed our last MLH bag was given out so we will take more bags in next week and hopefully see some of the nurses we know to help put her mind to ease. She is very concerned about the kids not have bags after surgery so she wants to get those back before the next surgeries happen. Here she is dealing with her open upcoming heart surgery and she is so loving and concerned about others. I just love her!

This evening was a little difficult. She keeps telling me how scared she is to go back in 2 weeks. She had alot of emotions going on tonight and we are working through them. She is mad and scared but ready to have energy and life like a normal little girl should. We just have to take things one day at a time and when that feels like too much...one minute at a time.