Thursday, July 15, 2010

Home Sweet Home

Today is Day 6 after surgery. I can't believe it has been one week as of tomorrow.  The picture above was taken yesterday (Day 5 Post Op) We were released from the hospital on Tuesday morning which was 4 days after surgery.  Both of Santiago's eyes had opened and he hadn't needed any morphine for over 24 hours so we were able to be discharged.  We were excited to be going home.  As we were waiting in the lobby area for my parents to pick us up and take us home, I got two different reactions as they saw my Santiago. One lady asked if he was in a burn accident and a man asked if he had an allergic reaction to something.  Santi's face was still really swollen and red around his eyes. The purple coloring around his eyelids had turned deep pink/red.  His little eyes were barely peeking out but they were both opened.  I know that I am going to have to prepare myself for the staring and looks that Santiago will recieve in public but these two reactions made me think that maybe his incision isn't that noticeable - at least right now because his face was drawing more attention to him.  We walked up and down the busy hallways waiting and he was pointing at plants and stairs and smiling and talking.  Just his actions bring attention to us and now his appearance will too. That's ok.  I'm going to have to have thick skin (again) and be ready to explain why he has an incision and why he will soon be wearing a helmet again.  All I told these two people who asked about him this time was that Santiago had to have surgery on his skull and his face and head were very swollen and bruised from it.  That's the truth in a nutshell.  I love telling people in detail about craniosynostosis because it raises awareness and teaches people about the condition and I know I will be doing this many many more times in the future and my whole life! 

Well we have been home for two days now and Santiago has been improving every minute - appearance wise and how he is acting.  On Tuesday when we got home, he was so excited to see Roxie and to be able to walk around and see his toys.  I was extremely nervous letting him walk and I think Hector and my parents were too.  His equilibrium was a little off and he was walking a little crazy.  We had to hold both of his hands every where he wanted to go.  He would take a few steps forward and then go to the side or backwards. He almost looked drunk haha!  This got better and better with time as well.  Now he can walk normally but we are still be cautious because we do not want to take any chances with his head.  The picture below was taken today - Day 6 Post Op.   You can see that he is smiling.  The top of his head and forehead are still pretty swollen. His eyes are just a little swollen and his right eye has a little black line under it.  His overall coloring isn't back to normal but I am surprised how fast his purple eyelids disappeared. 
Overall, we are really pleased with the outcome of the surgery.  My parents will be leaving us tomorrow morning since Santiago is doing so well.  He isn't as clingy as we expected and he is already way more active than we expected at this time.  We have our first post-op appointment with Dr. T on July 28th and we will be fitted for a helmet next Thursday or Friday and will get it at the end of the next week.  Again, thank you for all your love and support and especially the prayers! 

PS - If you are interested in seeing more pictures from surgery and post-op - especially cranio families - please don't hesitate to email me - craniomommy@gmail.com  I would be happy to share them with you especially if you are going to have to embark on a similar journey as us. 


  1. I've been gone, so I am happy to hear Santiago is doing well. Yall are all so strong! Sending more thoughts and prayers for a quick recovery.

  2. Glad to hear things have gone so well and you have made it home safely!

  3. Hi Katie! I want you to know that I am proud of you and your husband for your amazing strength through Santiago's surgery and post-op. You are an inspiration! Your son looks wonderful...I love seeing a smile on his face :) Praying for you, your family, and your son!

  4. Still sending kisses, hugs, and prayers. So happy to see him so happy. He looks as handsome as ever! Love you guys.