Day 6 Post-op

Thank you all for all your thoughts and prayers today and all the emails filled with well wishes and commitments to keep praying for Avery and our family. Please know that they were so uplifting to read! Through all of you, God had shown us the depths of selflessness. We can never thank you all enough, but please know our gratitude runs very deep. Mom ended up staying all night with Avery because she was not resting well and she couldn't stand to leave her (of course). She called me at 5:20 AM saying that she was having some crying periods every hour (though not quite as bad as the day before). Jon went to relieve her until 7 am shift change and then I went in to talk to neuro and to propose some ideas. Overall, Avery had a better day today. Not as good as the day before yesterday, but a definite improvement over yesterday. After much discussion back and forth today, the doctors have come to the conclusion that most of yesterday was likely attibutable to pain...that a lot of what we thought was seizure activity was actually pain response. Basically, I went in this morning and asked the nurse what day it was that they changed her pain med from a continuous Fentanyl thru IV to a every 4 hour dose of Oxycodone through the G-tube...and asked if the oxycodone could be causing her problems (like a negative reaction to it). She checked Avery's records and told me that it had changed on Oct. 2. I suggested that maybe we should try changing that since it was the only thing that had really changed prior to yesterday. She went and got someone from the pain team and we talked. Long story short, they agreed with me that maybe it was a pain medication issue. So they changed the orders back to the continuous IV Fentanyl. The nurse had also given her a dose of Tylenol at my request prior to that (which seemed to start calming her a bit after a few minutes). Avery had been written for the Tylenol on an as needed basis, but hadn't been given that since 6 AM yesterday. So, I also suggested that the Tylenol should be given on a regular basis. Sure enough, when the pain med was changed back, she finally rested for about 2 hours and was a lot more comfortable through the day. She still has some seizure activity, but it is "less" and she still is doing some crying and back arching and breath-holding (for which we give her an extra pain med push from your pump as allowed). Because she seemed to improve with those changes today, the docs think yesterday was more a "pain" issue than truely increased seizure activity. YEAH, except for the pain part! Dr. Kossoff came in today (of course the moment I stepped away to grab a quick bite of lunch) and talked to Jon. Avery did the crying, back arching, breath-holding episode while he was there. He very quickly told Jon that it was "without a doubt" a pain reponse, not a seizure. Thank God! That is what we thought, but I was starting to wonder yesterday. He did say that the pain could then cause her to have a seizure (which had occurred to me before, because lots of different stressors can lower a childs seizure threshhold), which would explain why we did see some seizure activity with the pain episodes yesterday. The attending neuro (Dr. Crawford) and the team also stopped in today. Dr. Crawford is the same one who stopped in the other day and told us that it was not time to be concerned yet, that some kids do this post surgery then settle out. He really reitterated that today and answered my questions. He apparently is a very foward and upfront guy...no sugar coating (as I overheard others saying), so I think we can put stock in what he is saying and still be hopeful that these seizures may go away in a few days. When I returned to the Children's House late in the afternoon (when Avery was resting pretty well), I met a wonderful woman and her children. They were downstairs in the basement talking to my Mom when I showed up. The woman's name is Jackie and she and the kids (Darby and Finn) come to do crafts with the kids at the house on Wednesdays. This week they were doing Halloween type crafts. Caiden had participated (after being convinced that it might be more fun thatn video games) and made quick friends with them all. Jackie and my Mom had talked a lot about Avery. When I showed up, Darby was making Avery a Halloween picture frame and foam pumpkin candy purse and Finn was playing with Caiden. They were having a great time too! Darby is the cutest thing! She kept telling me how Avery is going to be OK and that she was going to have her whole school praying for her. I can't even tell you how unbelievably selfless and caring this child was. She was only 7, but was much wiser and caring and more expressive by many years! She wanted to see Avery's pics in the surgery album, and my Mom was worried because the post-surgery pics are hard for us to see...but Darby said "I don't care what she looks like on the outside, it's the inside that matters"! When she saw her, she said that "she is going to be OK. I will pray for her." It was an extraordinary experience meeting them all! The compassion was so large...all from people who were complete strangers just a short time ago. Before Jackie and the kids left, she had ordered us dinner from one of their restaurants (turns out they have 2 restaurants close by) and had it delivered. Just like that...no second thought! We of course were so very grateful. Mom, Jon, Caiden and I all sat down and ate together. It was all outstanding...the best crab cakes I have ever eaten. We will get to see them again next week...and we can't wait for them to meet Avery then. (If you are reading this Jackie, thank you so much!! You made our night. I know you are one of the blessings God sent us today in response to our frustrations of yesterday. He always provides what we need.) Oh, a couple more things: Jon told me this evening that Diana (the neuro coordinator who was my contact in getting Avery seen her and the surgery rolling) stopped by to see how Avery was doing after I left this afternoon. She told Jon that they would not stop until they get Avery better. We are counting on that. Also, Avery might get moved to a step-down unit sometime tomorrow. That would be one step farther down the road of recovery. We will see how that pans out. We are headed back over to her in a couple minutes. I will let you all know how tonight and tomorrow goes. Again, thanks so much for all your support. Keep asking God to send these seizures packing. We pray it is His will. Along with us, so many of you believe it is and keep telling us that she will be OK. Thank you for that! Love, Holly