"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein
That is the way Alicia, Gavin's mom, described finding out Marissa will need major reconstructive surgery on her airway. So simple, yet so appropriate. THIS SUCKS!!!!! Thanks Alicia for hitting the nail on the head so perfectly.
I have really been struggling over the last couple of days. My face is breaking out, which it tends to do when I deal with great stress. I didn't really break down and have a good cry until I read the blog of a little boy who had a Laryngotracheoplasty (LTP) to be able to get his trach out and I saw pictures of him post-op. He was intubated, sedated and paralyzed. He looked so peaceful and yet so pitiful at the same time. I have seen Marissa and countless other kids intubated and post-op, in person and online, so I thought I was going crazy when the pictures of this little boy made me bawl like a baby. In my mind, I saw Marissa lying there, intubated again, tubes and wires hooked up all over her. Helpless. It just breaks my heart that someone is going to cut on my baby. Again.
I think I am going through the Kubler-Ross model of the five stages of grief. I have gone through denial, anger, bargaining, depression and acceptance several times since finding all this out on Monday. Even though these stages are most applicable to death and dying, they can also apply to this situation. And, in a way, I feel something has died. The hope that Marissa would be able to avoid another major surgery and be able to get her trach out without complication or struggle. Just to be clear, I am not as disappointed about her not getting the trach out soon as I am with the realization that it will not happen without surgery. We can wait as long as she needs us to, we just want to know that it can happen at all, if this makes any sense.
I am still too dazed and confused to go into any planning at this point. I keep trying to and then just get overwhelmed by all the questions and unknowns, the "I'll have to check on that, or see if this is covered, and we'll have to make sure and do this" part of it all. And I still have some big questions for Dr. E that just didn't come to my mind on Monday. I am thankful that I have a sister who is a speech pathologist because she knows quite a bit about this. She is going to help me in the near future to come up with questions that she would want to know the answers to and questions she thinks I may want to have answers to but don't know enough to ask. Thanks Michelle!
Thank you all for loving on my family during this time. Your prayers and messages of love and support, both on this blog and on Facebook, really mean so much, I just can not put it into words. This blog and being able to reach out to others whom I have not yet met, but who are walking similar paths has been such a blessing to me. It has really helped save my sanity. I really see you all, not only as friends, but as an extension of my family. You guys are the best!
My daughter Marissa was born March 13, 2007. She had a lot of health problems when she was born and ended up needing a tracheostomy to breathe, a g-tube to eat, and heart surgery. She came home after 2 1/2 months and is a very happy little girl. She has given her Dad and I plenty of gray hair, but we love her so much and are thankful for her everyday. C'mon along and enjoy our adventure with us!