CHAPTER TWENTY-SIX October 11 2004 Dear All, As I type this today, I am listening to something I have not heard in a very long time. A close friend of Ivy's is visiting and they are talking to each other about AFI, school, friends in common, and all kinds of stuff. Nothing very special until I stop and realize that Ivy is talking…something I have not heard (except very briefly once before) for exactly ten months today (Saturday, October 9, 2004). It is the greatest joy I have had in my life in a very long time… Now, before I give too much of the wrong impression, this talking is happening through a special valve that is placed over her trach collar, not Ivy talking like you or I would. It provides a means of talking with the trach still in place. It's not Ivy's voice, but it's wonderful to hear just the same! On Friday, I was running around the building at work telling everyone that I just talked to Ivy on the phone…I think they all thought I was crazy, until they realized what that meant. What it also means is that Ivy is off the ventilator for periods of time again! This is quite amazing to me seeing as just two weeks ago we were finishing a second surgery to fix her dialysis catheter and Ivy was suffering from what appeared to be seizures. I honestly feel that a lot of this is the direct result of her primary pulmonary doctor returning to her case and making sure that Ivy progressed once again. This last week has been wonderful. Ivy has spent more and more time off the ventilator. We are going very gradually this time, with Ivy in control. If nothing else, the staff is finally learning that Ivy knows best what works and what doesn't. Ivy did push herself a bit much last night and it was after midnight when we finally left because Ivy her sats were low. This morning, because Ivy was still satting low the nurse did an ABG to find her oxygen levels were only 48…too low a number for comfort. The nurse raised Ivy to 70% delivered oxygen until the doctor came in. He had ordered a chest x-ray as well so when he came in and read it, we were very happy to know her lungs were okay. He felt that this was just the result of Ivy pushing a little too hard and turned the oxygen level down to 60%. Now, a few hours later, she has spent several hours off the vent with her speaking valve installed and talking up a storm, all while satting 100%. I fully expect that she will be weaned back down to 50% before the end of shift today. This is the most positive week we have had in quite some time…rather fitting I guess since today marks the end of ten months of Ivy being in the CCU of Palomar Hospital…hard to believe… I had mentioned the problems of last week… Ivy had a very busy weekend last week which, unfortunately, was not a fun one. Kathie and I rushed to the hospital at 1:00 AM Thursday (Friday morning) because the nurse called to tell us Ivy was having seizures after her dialysis filter has clotted off for the third time in 24 hours. When we arrived, Ivy's "numbers" were okay, but she was unresponsive to voices. Very terrifying thing to see...In a short time, she became responsive to us, but she was somewhat delusional and after about twenty minutes, she became more responsive to us and her environment. They performed an EEG on Friday and found no indication of any seizures. Friday evening, Ivy went down for a CT scan (this was quite the ordeal as Kathie, her brother and I all paraded along behind Ivy's bed, a team of two RT's and three RN's). Again, the results showed no signs of seizures. It was becoming apparent that medication changes and blood sugar levels that were crashing one time and soaring the next were the issue. To make matters worse, Ivy's dialysis catheter was not working...she had just had surgery one week prior to put in this catheter. They decided on Saturday afternoon that Ivy would have to go back to surgery to realign (hopefully) the catheter or replace it once again if it would not work. All day long, we waited for six PM when Ivy was scheduled for surgery. Nothing to eat or drink for Ivy and, in support of her, Mom and Dad didn't eat or drink either. The team finally came up to transport her once again to the Operating Room around 7:00 PM. I could not help but feel anxious as we waited. It was a little over an hour when the doctor came quickly out of the door, shook my hand and told me everything was fine, that he had to go perform and emergency surgery and would be back up to Ivy's room to talk to us later. Sunday was a quiet day, filled with visits from friends and family. It was finally a rather quiet day and Ivy was in good spirits, in spite of issues with pain. On Monday, as I got ready for work and tried to digest all of this so I could write at least a part of the update, it occurred to me that I didn't even remember the days ending or beginning….Wow…what else can I say? We had wonderful visits from James on Saturday and Howard on Sunday…they are two very fantastic supporters of Ivy and it was great to see them both! It was incredible to think that James would make it a point to stop by and see us while he was in the states for business. And the fact that Howard would put up with trains and buses (and give up his entire day) to make his journeys to visit…well, it means the world to us all…thank you both so very much! Some other news I want to share with everyone…I got an email a couple of weeks ago from one of the people who manage AFI. I was very pleasantly surprised that they would take the time to email me, but as I read on, I was totally blown away. It seems that Adam, Jade, Davey and Hunter were all very sorry that they couldn't make it to the hospital while they were doing street scene in San Diego and wanted to do something special for Ivy to let her know that they care. They had ordered flowers to be sent to her room, but the florist and the hospital couldn't seem to get all the details right to get them to her, so they were emailing to ask if there was anything that they could do to make it up to her. I was in shock and awe all at the same time…I can't even begin to express how I felt at that moment…it was the most incredible gesture I could possibly imagine. Here is a group that is one of the biggest up and coming acts of our time and they take the time to think of one fan out of so many…amazing! I send an email back, saying that so very nice of them to think of Ivy and that it truly meant the world to us all. Unfortunately, Ivy wasn't allowed to have flowers in the CCU and if it was at all possible, could they sign something and send it to her? Well, I believe it was the next Friday that a package arrived from the management company. I didn't really know what to expect, but knew that no matter what we might find in the box, it would make Ivy's day. When we got to the hospital that evening and told Ivy whom the box was from, well, I couldn't open the box fast enough. It was especially rewarding because her Aunt and Uncle were there to share the moment. I first took out a note from the person who arranged everything and read it to Ivy. It told Ivy that AFI was currently out of the country, but the boys had asked her to put together some things to send to Ivy. The first thing I took out of the box was a shirt…a very special shirt. It seems that Davey Havok wore this on stage and now it belonged to Ivy. The look of shock, amazement and pure joy was incredible. Thanks so much Davey, for giving Ivy the shirt off your back…she will have it forever. This was so amazing! Ivy was ecstatic, she couldn't believe it, but it was only a very special beginning. As I went through the box, I took out shirt after shirt after shirt…just incredible. there were all kinds of buttons, patches, a little purse, a photo album, several CD's including Sing the Sorrow black on black CD, the Clandestine DVD, a couple of vinyls, back stage passes from two tours (full access) and, at the bottom, very carefully packaged were the original laser prints of several of the photos used for the Sing the Sorrow CD! The public has never seen most of the prints! These prints are incredible! Every time I walk by Ivy's room and see the box, I am once again reminded of how special these guys are and how fortunate Ivy is to have them (and all the DF) as friends…Davey, Adam, Jade and Hunter, I am forever in your debt and totally amazed by your kindness…you are the best. For about the last six weeks, Ivy has had a very special visitor. Her name is Mindy and she is the most incredible three pounds of joy I have ever seen. She is a miniature Chihuahua puppy and she is the sweetest thing I have ever seen. Her owner brings her for an hour visit at least once a week and it brings a smile to everyone's faces to see this little puppy. She never barks, is totally in love with Ivy and loves to be with her. Her owner tells us that when she tells Mindy that she is going to see Ivy today, that Mindy gets all excited and keeps going to the door so they can go to the hospital. She is such a wonderful treat for Ivy and all of us. This puppy just loves to be pet and Ivy loves to oblige her. Mindy will sit on Ivy's lap and watch out the door, protecting Ivy. She is so much fun and the smiles Mindy brings to Ivy's face are incredible. Ivy has also had visits from some of her friends from school that have meant the world to her. One particular friend only found out about Ivy's accident about a week ago. He was very distraught to find out about what had happened and spent the day with her. It took him a while to figure out how to read lips, but it wasn't too long before they were chatting away, just like the good ole days. I can't begin to tell you how much this helps Ivy. It really raises her spirits to know her friends haven't forgotten her. We are all blessed that there are so many people who support us all. I can't begin to thank everyone for all of your prayers and well-wishes. I can promise you all that it really has made a difference. Ivy is a miracle. There are so many challenges that she has faced that were beyond belief and she has triumphed each and every time. I know in my heart that it is in part because of the wonderful support you all have shared…God bless you all. With our best wishes Always, Michael, Kathie, Chris and most especially, Ivy