Day 9 and Still Counting

Sorry that there was no post from yesterday...that I left you all hanging so to speak. It has been a challenging and frustrating couple of days. I'm not sure I know where to begin, but here goes... By late evening on Thursday, I was becoming more convinced that the back arching, crying/screaming out episodes are not pain (at least not primarily). To watch her do this is simply horrible. The more she was doing it, the more it looked to me that she was not in full control of what was happening to her. I think the pain would have to be absolutely excruciating to cause the stuff we were seeing...and there is just really no evidence or even reasonable cause for pain of that level this far out post-operatively. After 2 days of talking to the doctors (PICU team, neurosurgery, and neurology), I think we might finally have them working together to find a cause instead of just trying to treat symptoms (which they were not doing very well or systematically I might add). It is such a long story, I just don't have then energy to tell in detail right now. I just finally really voiced my opinions, ideas and observations yesterday and made them listen. The night team had been great, pretty much supporting our thoughts and observations, but the day team and Avery's regular doctors have been a little harder to deal with...or to get to really listen to us. I finally just told them yesterday that I really think the events are seizure related (not pain) and that I should be taken seriously since I have been with her nearly every day for 14 months. I still haven't got them to commit to doing a video EEG for sure as of yet, but I think it is likely that they will on Monday. I will fight hard for it. They did do a CAT scan and a spinal tap yesterday. Both can back normal or as expected, so they didn't tell us why she is doing this crying/screaming and back arching sutff...but at least they do allow us to eliminate some potential causes (which nobody had been doing). At least the overnight doctor from last night came to me and said that he knew it was frustrating, that they weren't getting us answer and that they needed to be. He totally agreed with my frustration and my reasoning about all this. It was good to know that someone was advocating with me and supporting me that is on the medical team. He also told me I was right to advocate for my child. I have heard that a lot here...especially from the nurses. One today siad, "It's a great hospital but you do have to advocate for your child. The squeaky wheel gets the most grease." Good to know...I can be really squeaky if need be! Before its over, you might be able to hear me where you are. Overall, she is about the same. She is still having seizures and these episodes. These screaming (so hard that she does not breathe for a really good period of time) and back arching (so far that I don't know how it does not hurt her) episodes occur as much as 10 times an hour sometimes. Sometimes the medicines she is getting (one for pain, one extra for seizures) works to stop them for a while, sometimes not. She did it so much and so hard yesterday, that she made her throat bleed from irritation. She is really hoarse too as you might imagine. It really is so hard to watch...it breaks my heart eveytime...that I can't stop it...that I can't help her. I keep praying that it will go away or that we will find a cause very soon (that is treatable). She can't keep doing this...her body won't take it forever. She can't get the rest her body needs. There has to be a reason... On a slightly positive note, she did get moved tonight from the PICU to a step-down unit. We can now sleep overnight at her bedside. Before, we could be in the room anytime but we could not sleep in it. It was getting tough to do that night after night in the PICU, and we did it because we were not comfortable leaving her alone. I was worried at first about moving down because I was concerned that she might not be able to get the nursing care and attention that she needs (or the attention of the medical staff), but it looks like that won't be a problem. We might even get more time with the team of doctors on that floor. They were at least great about listening to me tonight after she first arrived on the Immediate Care Unit. We can have 3 visitors (instead of 2) at a time now and Caiden has anytime access between 7am-11pm to her so long as he is not sick. We can also eat at the bedside and we don't have to leave her during the 7-8 shift change anymore on this unit. We also have MUCH more comfortable chairs there. That will definitely help with holding her which has been tough becuase the chairs in the PICU are highly inadequate. Now I think maybe it was a God-send that they moved her. It should at least give her a little more comfortable and quieter environment (us too!) Caiden has absolutely charmed EVERY adult he has met here. The Manager of the house just loves him. Today he got to bake cookies with two young, cute sorority girls here at the house. He had them smitten in no time at all. We keep hearing that he is a doll and that he is so charming...that he has a beautiful smile. Of course we think so, but it is nice to know that other people like your kid (you know, people that don't have to). We are so, so thankful that he is a part of our life...that we were blessed with him. He really has been so good at taking all this in stride...what a blessing. At dinner last night, he prayed out loud to God to make Sissy better and to gid rid of her seizures. It was sweet. He really does love her and wants so badly for her to be able to interact with him. In the meantime, he is easily making friends here when there are children in the house around his age. He LOVES the Pac-Man video game! I have to admit...it does look pretty fun. Well, that brings us up to date as best as I can without going on and on with all the frustrating details, doctor by doctro and day by day. Suffice it to say, we need you all to continue asking God to make Avery better than she is and to give us the much needed strength to get through all this. We do still believe that anything is possible, because through God it is. I know we just don't always know the path or why we have the detours. We just keep praying for a miracle. They do happen. Thanks for the emails and well wishes over the past two days. They keep sustaining us. They really, really do. We feel the outpouring of love and concern all the way here. I'm sorry that time does not allow me to respond to each and everyone of you as you deserve. Someday soon I pray.... We miss you all and can't wait for the day we get to bring our Avery home. Much, Much Love and Many Blessings, Holly