Day 6, and the real surgery update

10:24:00 AM Atticus Army 6 Comments

Hey Army,


Atticus is doing well.  He is quite the feisty little kiddo.  The surgery went phenomenal yesterday.  The doctors came to speak with us right after the surgery to give us an update on how it went that they said that they were very surprised with how well it went in spite of all the craziness throughout the surgery.  We knew that the tumor was pretty vascular from the information that we were able to get from the angiogram a few days ago.  In light of that information they did change their approach a few times to hopefully alleviate some of that bleeding.

As we talk about blood loss or hemorrhage in an infant is of great concern so they were prepared with a lot of blood products there for replacement if/when needed.  As we all know hind sight is 20/20 and it was a really good thing that they had all of the products there ready to go.  The doctors said that this was one of the most challenging surgeries they have had to do in a really long time.  As soon as they accessed the tumor, they had to start replacement blood therapy.  The doctor said, " it was was just a damn bloody tumor!"  They had to use about 2.5 liters of packed red blood cells, about a liter of fresh frozen plasma, and various other clotting factors, and fluids during his 8 hours surgery.  Just to give you an idea as many of us don't really know how much blood is in our bodies, in an infant there is about 80 ml per Kg.  So Atticus weights in at 11.2 Kg, so he has a total body volume of about 880 mL.  So if you do the math, which we did haha, they had replace his entire bodies fluid volume about 3-4 times. 

The surgeons did tell us that it is a VERY aggressive tumor and is definitely cancer. :-( 
If you recall they did a spinal chord MRI along with the stealth MRI yesterday, and they said that they saw some suspicious "sugaring" down the spinal chord, and after seeing the tumor during surgery they understand what they saw on MRI.  



As we sat with the surgeons after the surgery was over, we felt great joy that the surgery went so well and that our little Atticus did so well! We decided as a couple that despite the horrible news that it is in fact cancer we need to focus on all of the blessings that took place yesterday. The surgery went better that expected, they were confident they were able to get all the tumor out and our sweet little angel boy was still here with us!! We will take this one day at a time and work through this. For right now we are focusing on getting Atticus recovered  and healed from this major surgery. The surgeons explained that this will be a marathon and will take time. We won't know what our treatment plan will be until the histology report comes back. We should have good idea of what we are dealing with and what this all in tells by next Wednesday or Thursday. Our neurology team meets with the tumor board every Wednesday and with a team of about 50 people who will all review his case and the type of cells we are dealing with. The Neurology oncologist who we met earlier this week came here from Harvard University and he explained to us that this hospital has access to any type of treatment that is available in the World. He says whatever treatment Atticus needs they can get it here for us! How comforting this is for us! 

The anesthesia team just did a phenomenal job, despite the hemorrhage and duration of the surgery his blood pressure stayed consistent, all blood values and electrolytes, and clotting times stayed in normal ranges both during the surgery and after.  So there is honestly so many amazing things that happened yesterday during the surgery and we are just so grateful.



 
I don't believe there is anything that can prepare you for walking in on your baby after surgery and seeing a million tubes, cords and machines hooked up to your sweet baby. We were overjoyed to see him and we could feel his sweet spirit the second we entered the room. At the same time though your hearts cant help but feel broken and helpless. Tears were streaming down our cheeks as we watch him  lay there intubated and peaceful, we walked over and touched his sweet face and gave him a kiss. He oped his eyes and you could tell he knew it was us! Our hearts melted! All we could think of was that he was safe and right here with us. My heart longs to be able to hold him and snuggle him. Hopefully at some point today we can hold and snuggle him, as long as the MRI looks good and he can be safely extubated. He is strong and a fighter he has shown strong moments on both sides already. His left side is still a little weak but that is to be expected and will get better with time! HE looks so good considering the seriousness of his surgery and blood loss and his blood work looks great too! There have been so many tender mercies and blessings on our behalf and we have seen so many miracles already! 



Yesterday was a day full of tears, fear, and great joy. We will forever be grateful for our family who was all here to be with us and carry us through! Along with Atticus's Army who have prayed and fasted on our behalf. We can truly tell each one of you that we felt peace and comfort yesterday. We wish we could personally give each and everyone of you a hug and tell you thank you. we have felt so much love and support from this army behind us. We need each one of you in this journey!  We will continue to stay strong and we will work through this one day at time. We are not about to give up on this fight for our sweet boy.