Walker's Pacing Journey
Walker has CCHS which causes him to stop breathing when he goes to sleep and his breathing is sometimes affected while he is awake. To help him with this he has a trach so that he can be hooked up to a ventilator every time he goes to sleep. He is ready to be free of his trach, in order to get rid of it he must have another way to be ventilated at night. The best way for this to happen and the best thing for his quality of life is to have Diaphragmatic Pacers implanted. His trach has always been a part of him and is all he's ever known, but he is ready to be more independent and wants to be more like everybody else. To get this done we will have to travel to UCLA Children's Hospital. It is going be a long process for our family and will require at least 4 trips to LA and we need all of the support we can get. Walker needs the support. Please help us raise money for him to make his dream come true. To learn more about his disorder click here www.cchsnetwork.org
He is looking forward to having his trach removed this year (hopefully sometime in the Spring we will return to CHLA for this)! While he is very excited, mommy and daddy are terrified! It will be bittersweet. I want him to move forward for sure, but it is going to be scary. It has ALWAYS been there and if something happens he can be easily vented. But we will adjust like we always have.
We hope you all had a great 2016 and pray that you will have an even better 2017! God bless you all and thank you for your support through our journey.
While I haven't seen the Day family in a long time, I will never forget meeting them and caring for Walker in the NICU. I was the nurse who discharged him and vividly remember carrying him to the car patting his bottom so he wouldn't fall asleep and stop breathing. I had the opportunity to visit in their home where Amy and Josh had everything Ealker could need. Amazing family. Getting Ealker this surgery would be a dream come true.
This is our oldest grandson. He has been waiting for this surgery all his life. Life with the trach and being on a ventilator every night has been all he's known. Carrying all kinds of equipment, oxygen, go bag (to bag him if he quits breathing), having a nurse that goes to school with him (to suction him and to notice when he has periods when he starts to breathe inadequately and starts to get bluish)... it would be a whole different world for this very loving boy. This family has been through a lot from the day of his birth. He spent the first four months of his life in the hospital. Then they came home complete with nursing care (a young couple with their first child). Their home has never known the normal most of us take for granted. Listening for beeps and alarms has been their normal. They have been awesome parents taking the best possible care of him and his two younger brothers and staying strong as a couple. Please help them to raise the money they so desperately need to finance this surgery and the many cross country trips it will take to make it happen. Walker and his family deserve this opportunity for normalcy. Thank you!
Walker, you've got this! You are one of the sweetest boy I have ever met. You and your family are in my prayers.