Day 17: The Eve of Surgery #2

Hello All! I want to say THANK YOU, THANK YOU, THANK YOU to everyone who worked so hard to make the Benefit Golf Tourney for Avery a complete success today. Thank you for giving your time and talents so generously, thank you to all who donated food, sponsored holes, served as cooks, thank you to those who set-up and cleaned up and did anything in any way to help this tourney happen and to run today. We appriciate it so very, very much. We hope all who played had a great time and we thank you for entering the tourney...for helping us and our little angel. Please know that we wished we could br present, yet it was not in God's plans. We owe you all so much and we hope to be able to thank each of you in person by Thanksgiving. Until then, please just know that you have made a difference in our lives and we are grateful. Avery has been about the same the last two days, but has not slept much at all. I hear from some parents that there children didn't sleep much after surgery. Some are on Melatonin for that now. The surgery must have some affect on the sleep cycle of some kids. We will have to see how Avery does on that front after tomorrow's surgery. It's good to know that it can be treated with some success if necessary. They plan to come and get her between 6 and 7 AM tomorrow morning. It will take a couple hours to get her IV's and other lines in, so actual sugery probably won't begin before 9 AM (8 am Tell City/Central time). She is currently is without any lines (the central line had to be removed yesterday as it stopped functioning properly). When I arrived back after dinner last night, I found them trying to put an IV in her leg...to no avail of course. I told them not to attempt anymore lines without calling anesthesia to do it. Later, we actually talked them out of inserting anything else before surgery tomorrow (she has so few potential access points that we did not want them to compromise any of them before surgery). So, she is now getting Diastat as needed for breakthrough seizures instead of IV Ativan. It will be a longer surgery overall, as it is significantly more involved. We will try to keep a few people updated who will then spread the word along to others, and so on and so on. We are all praying hard that God will have great plans in store for Avery tomorrow and that we will be receive an awesome anniversary gift. We pray that God will keep her safe and stable through the surgery and that he will use His hands to guide the surgeons and and that He will provide the necessary knowledge to all who care for her in the operating room. We pray that she will return to us safe and sound and with a whole new quality of life just around the corner. We pray that He helps her surgery scars and such to heal as quickly as before and that the seizures are sent away never to return. We pray for the strength that we all will need to make it through tomorrow. Caiden has had a rough couple of days. He is sick. I guess it was inevitable in some ways, being potentially exposed to so many germs just through contact with others here at the house and at the hospital. Mom and I took him to the clinic yesterday to be seen by a doctor. It looks like ti is likely just a viral infection, but we will here in a couple of days if anything showed up in a culture. He has a wickedly sore throught and is tired. He has also had a fever off and on. So, he is on a medication to treat his symptoms and on Tylenol/Motrin rotation for the fever and throat pain. Now, we are all pumping ourselves with vitamins in trying to avoid getting it ourselves. We pray that tomorrow will be better for him. On a sad note, I heard today from a parent on the Yahoo hemimegalencephaly group. Her child passed away yesterday. He was about 1 year older than Avery, but was not able to have the surgery due to some abnormal areas in the non-HME side of his brain. Please include this family in your prayers tomorrow and int he days to come. They are certainly dealing with the most difficult days of their lives. Many blessing and many thanks, Holly