(Leading up to) SURGERY DAY

So this is the day we've been anticipating for years. YEARS. 

Now that it is finally here, I find myself in a state of disbelief, grief, hope, fear, love, faith, and did I say fear? 

Ever since Nicholas was diagnosed with L-TGA all those years ago, I have been consumed and obsessed with learning about the defect, studying it and teaching myself and learning from others, so that I could help make the best decisions for my boy. I have done my due diligence to be an expert in this defect and I understand the benefit of this scary surgery, which will hopefully provide my sweet boy a chance at a long and happy life. 

This has been literally one of the scariest points in my life. I have been trying to be strong so he won't see me cry, but I break down often. He has been very quiet and reserved. He cries tender tears at night. He is so brave. I know he tries to protect us by not showing how scared he is. But I know he is afraid. He knows his body will be open to the hands of his surgeon and his body will be kept alive by machines today. He knows he will feel pain and hunger and confusion that he can't control. He knows he will have a long road ahead of him to get back to the happy, sweet, carefree boy he is. This will change him. Inside and out. 

We are blessed and fortunate to be in Boston. Dr. del Nido is probably the best pediatric cardiothorasic surgeon in the world. He looks unassuming, but the people here at Boston Children's Hospital sing his praises. He does twice as many Double Switch surgeries every year as they do at Stanford. He is the one we feel is the very best to finish up this journey we have taken to make Nicholas's heart anatomically correct. 

Yesterday, we were at the hospital all day. Our day started with check in at Pre Op, where we filled out paperwork, signed forms, etc. We went straight to labs, which Nicholas hates, and they drew his blood to have baseline chemistry and to make sure he is not harboring sickness. We went to x-ray, where they checked to make sure his lungs were clear.  We had a consultation with the cardiac nurse, who showed us around and took vitals. We had an EKG. The Child Life Specialist pulled us aside and Nicholas got to transport the Stanley Cup from the basement up to the exit of the hospital (which was funny because he has never so much as watched a single minute of hockey in his entire life!). We got to take a break for lunch and then we had the. longest. echo. ever. Their machine took such clear images that even an untrained eye could probably decipher what they were looking at. It also took 3-D images, which was pretty cool. The echo was almost 2 hours long and they took over 200 images and videos. We then waited for a bit and officially met Dr. del Nido. He was very informed and answered all of our questions. He indicated that he felt confident that this was a window of opportunity. I'll explain more about that in a bit. 

We then met Dr. Marx, who has discussed Nicholas with me and Dr. del Nido all of these years. He is very experienced in L-TGA and has a wealth of knowledge that he shares and helped us feel some peace in the looming surgery. He is a very kind and empathetic man.

The last stop of the long day was the MRI with gadolinium contrast. The gadolinium is an important piece of data that would let us know if there was any damage to Nicholas's left ventricle from the very tight PA Band. This was almost a nightmare. Lorenzo and I had both decided and agreed that we would not consent to doing the Double Switch if the MRI wasn't similar to last November's and if the gadolinium showed damage. Nicholas hates needles and his only "good" vein had already been used for the blood draw earlier in the day. Not one, not two, not three, but seven attempts later were they able to get a vein for the dye contrast injection for the MRI. At one point in the fiasco, the MRI tech told us we did not even need the contrast and tried to get us to agree to do the MRI without it. I almost lost it. I told him we came all the way from California for this particular piece of information and we weren't leaving this hospital without a gadolinium contrast MRI. I would not have been able to sign the paperwork without 100% assurance that Nicholas's left ventricle wasn't as healthy as possible for this surgery. They ended up calling in a fourth nurse who got an IV in for the contrast. The MRI itself took almost 2 hours and they got the images they needed to assure the team and us that Nicholas is as ready as he can be for the Double Switch. 

Nicholas had to stop eating at midnight, so we went out for a real Italian feast at Carlo's Cucina Italiana. It was delicious.

And here we are.