CHAPTER TWENTY-EIGHT November 20 2004 Dear All, It has been over eleven months now since Ivy first entered the Critical Care Unit of Palomar Medical Center. I would never have even imagined Ivy in the hospital, let alone spending almost a year of her life confined to a bed. This journey has been one that even as we live it, I cannot begin to comprehend for myself, let alone for Ivy. As I type this, Kathie is helping Ivy with her makeup, getting ready for the day ahead. She is so vibrant, so full of life in spite of her injuries. Ivy and I were joking with each other about television shows…"quality" time at the hospital…when her RT (respiratory technician) came in to check her lungs. We stopped our conversation; I got a towel, put on gloves and helped the RT suction Ivy's airway…all of which has become a routine part of our lives. These past weeks have been filled with many changes. On Friday, November 5, Ivy was declared septic again when her saturation levels plummeted and the oxygen levels were set back up to 90 percent. Her pressure support was also increased to levels all the way back up to 28 and above after being at 12 for so long. She had been getting sick from about Halloween on, but the doctors didn't respond to Kathie when she continually pointed out the signs that Ivy was getting septic again. It was incredibly difficult to see this happening to Ivy again. She has been through all of this far too often. Nothing is as frustrating to Kathie as to be telling the nurses that she knows Ivy is showing signs of becoming septic again and to be told that the doctors do not want to change anything. In spite of all of this, Ivy has made incredible progress since then and is now back to a point where her pressure support is back down to 14 and she is spending time off the ventilator. Her goal is to be off the ventilator three times a day for as long a time as she is comfortable. Once again Ivy has triumphed over this setback and is fighting to get better. We had another bit of news that is somewhat discouraging last night. The plastic surgeon who specializes in wounds came in to evaluate Ivy's head wound. This is where a bed sore ulcerated into a huge hole on he back of her head. We had been seeing good signs of healing, but cultures showed a staff infection that was being treated. According to the doctor, it seems that the infection has entered the top layer of bone on Ivy's skull and it will have to be removed to allow the healthy bone underneath to heal through it. He is suggesting that we don't do this until Ivy's surgery is done when she is moved to UCSD (more on this below). Of course, this upset Ivy deeply (as well as Kathie and I). Just one more thing to overcome. In the last update, I told everyone that the surgery would most likely be performed here at Palomar, but the surgeon told us he had never performed this type of surgery and would not do it. They have decided that a transfer will be required. Plans are to transfer Ivy down to UCSD's hospital in Hillcrest where they have a surgeon that is very familiar with the procedure. They have arranged for a doctor to take over Ivy's renal care and doctors at Palomar are arranging for Ivy's pulmonary care team, who will be the primary caregivers. Once this is all established and the doctors at UCSD accept Ivy as a patient, we will be able to move forward with the transfer. The primary doctor here at Palomar has asked the insurance company to approve for the medical team to come up to Palomar and evaluate Ivy's medical condition prior to her being transferred. This is critical because, as the doctor put it, it would be senseless to transport Ivy to another hospital and risk complications if there was nothing that they could do for her that isn't already being done at Palomar. We should hear about this soon. What this all means is that it is highly unlikely that Ivy will be moved over the Thanksgiving Holiday, which is somewhat comforting to us all. Not that we have any plans for the holidays, but rather we would be much more comfortable with this move knowing that all the doctors involved had reviewed Ivy's case and came to a consensus that it was the right thing to do. This move will be very hard on the family. Kathie will spend the weekdays by herself in Hillcrest while I commute between home and work, trying to make sure that Chris stays up to date with his schoolwork and trying to get our home back in order. It is amazing how far into disrepair a house can get in a year…something to keep me out of trouble for sure. I can't even begin to express my concerns at having Kathie staying alone so far away. It just isn't possible for me to make the commute to San Diego everyday after work and Kathie isn't comfortable commuting back and froth to San Diego, especially when we are talking about a three hour commute one way. Somehow, I know we will make it through this, not only because we have to, but also because, in the end, it will be the best for Ivy. The social worker at Palomar is trying to get Kathie set up with a place to stay through the hospital, but nothing can be promised at this time, especially since we don't know when Ivy will be transferred. I hope that with lots of support, we will make this a workable situation. Moving on to other things… Halloween was a lot of fun. Ivy had visitors all day long, which was wonderful. Ivy passed out candy and everyone (I hope) enjoyed their visit. I ran to a local costume shop to get something for Ivy to wear (thanks to a certain nameless RT for telling they had cute costumes there). I stood in line for over an hour to buy a punk fairy costume that Ivy loved, so it was all worth it. Ivy had visitors until about seven P.M., which was wonderful for Ivy. It wasn't too much after Halloween when I received a very special email from someone with AFI. It was a request for my phone number so that we could discuss something special for Ivy. I have to tell you that I was very excited. When we talked on the phone, I was in awe at the proposal that was presented to me. I am, once again, totally blown away by the support and care that AFI and their team have shown for Ivy. Arrangements were made for Davey Havok to call and talk to Ivy on the phone! This was so totally amazing! I was so happy for Ivy and tried to figure out a way to surprise her with the news. I asked Ivy's pulmonary doctor if this would be okay and he told me that he thought this was wonderful…and supported the idea 100% With the doctors approval, we set a date and time for the phone call. I wasn't going to tell Ivy at first, hoping to really surprise her, but decided that if she knew about it, she could save up her strength and be able to talk to Davey as well as listen. Ivy was so nervous at first, but soon settled down and was talking to Davey as though they were best of friends. Even though I didn't talk directly to Davey, I could tell that he was wonderful to Ivy. They chatted for a least thirty minutes and I know it was magic for Ivy, because it was for me as well. Tears of joy filled her eyes and she squeezed my hand as she talked to Davey…moments of magic. Not only did he promise to send Ivy a copy of AFI's cover of Nine Inch Nails "Head like a Hole", but invited her to the concert of her choice as a guest of the band…VIP treatment all the way! Very incredible…thanks so very much, Davey and all. When the package arrived a few days ago, I not only found the promised CD, but I had to chuckle a bit when inside the envelope were several Neil Diamond CD's for Kathie… When I was arranging for the phone call, I mentioned that the pulmonary doctor had asked they could pull a few strings for Neil Diamond to call him…oh, and that Kathie wouldn't mind a call either. Well, she didn't get the phone call (yet) but the CD's were there at least, along with a note to her and Ivy…AFI and company, you are all the very best…thank you all so very, very much. Ivy also had a visit from a very dear friend. She has known him for years across the net, but they had never met…not that unusual since he lives in the United Kingdom. Well, it seems he was coming to the US for a visit and got in touch with me to make arrangements to come see Ivy as well. It was a very special thing to do. He had found out what had happened to Ivy sometime after the accident when he called our house. He was concerned because she hadn't seen Ivy online for some time. It was a wonderful visit and a special time for two friends finally meeting face to face. I was so thankful that he came to visit. It was incredible for Ivy and all of us as well...thank you so very much for coming to see her. Another wonderful visitor has been to see Ivy as well. Back in Chapter Twenty-Four, I shared with everyone the story of the young woman who was injured in a motorcycle accident and brought to Ivy's old room. How Ivy sent Kathie to be there with her, to reassure her because her family was so far away. Ivy also sent me to get a teddy bear so that it would be there for her. Well, she has also come to see Ivy and Kathie at the hospital and has been an incredible inspiration. It was so wonderful of her…she has been so incredibly positive for Ivy and Kathie, bringing Ivy some wonderful gifts and her fantastic spirit. Thank you so very much. In closing for now, I would like to say, once again, that I am so very thankful to everyone for remembering Ivy in your thoughts, hearts and prayers. For those of you who are local…If you can, please take the time to drop by and say hello. We are not sure when Ivy will be moving to UCSD, but I know it will be more difficult once this happens, at least until we figure it all out…God bless you all. All of Our Best Wishes Always, Michael, Kathie, Chris and most especially, Ivy