CHAPTER TWENTY-SEVEN October 28 2004 Dear All, After the last update, this one is a bit difficult to write. Even though the pulmonary and nephrology doctors both tell me that Ivy is simply fluid overloaded and that she should recover in a few days, it is still a step backwards when we were doing so very well. I want to cover something first, then get back into the update. This Sunday is Halloween, Ivy's favorite holiday. I would LOVE to have as many people as possible stop by (even if only for a moment or two). I am planning on having some Halloween candy for Ivy to pass out to everyone and hope to make the day something special for her. Costumes are of course optional, but for those who have the nerve, she would love it! I may just pull my monk costume out of retirement for the day....Oh dear. If you can, please stop by. I know everyone is very busy, and I understand how hectic life is (boy do I) but I can't begin to express how much a visit from her friends means to her (and to all of us). You have all been such an incredible support to us all and I can't possibly thank you enough, asking for more seems wrong, but this request is so very important. Okay, back to the update... Last week, there was a meeting of all of Ivy's primary care doctors to determine what the appropriate plan of action would be to get Ivy on her way home. For the first time ever (to my knowledge) they actually got all of the doctors in the same room and went through everything together. While we weren't invited to be there, my understanding was that it was very productive and they were able to develop a plan. First thing was to determine if there were any infections in Ivy's ribs. Remembering back ten months, Ivy's chest was crushed, breaking her ribs in multiple places. Because there was a chance that Ivy's bones were infected. a bone scan was ordered. Ivy underwent this ordeal over two days last week. No fun for her or Kathie at all, but the results were negative, a very positive thing indeed! Next a CT scan was ordered to trace the path of the fistulas by use of a dye solution injected into the fistulas prior to the scan. This was scheduled to happen Monday the 25th. Last weekend, Ivy was so very nervous about the CT scan. Because they were going to inject dye, Ivy was very concerned about needles. Ivy has always had a very strong phobia to needles and was dwelling very heavily on the injections. Because this was so very stressful, her saturations were not as good as they had been. She also wasn't feeling all that great. While some of it was nerves, Kathie knew there was something else going on. We were, of course, concerned but the doctors assured me that it was just stress and nothing to be worried about. Well, we were still worried. Now, the trip to the CT scan on Monday went okay...we found out that the injection was through a small tube and no needles were involved, which was good, but still Ivy's saturations were not improving. As a matter of fact, they were getting worse. The nurses were having to turn the FIO2 up to 80% to keep the saturations in the 90's. Ivy was being suctioned every two hours, which is miserable for her. We would question the doctors and be told not to worry...the saturations were not getting any better. Tuesday was miserable for both Ivy and Kathie. Ivy was so miserable, satting poorly and having a very difficult time eating anything. Now, after ten plus months of sitting by your daughter's side and seeing her go through this is more than ANYONE should EVER have to endure. Having some very good weeks and then seeing Ivy go backwards weighs very heavily on us all, but most especially on Kathie, who is there by her side every single day, holding her hand and overseeing all of her care. The sats getting worse and worse each day and nothing being addressed by the doctors is not a good thing, no matter what they tell you, hearing that this is a normal swing is not reassuring, not in the least. Kathie told the doctors that Ivy was very "wet", that she was retaining a lot of fluids. Finally, after an X-ray showed an increase in the infiltrates, they decided that Ivy was fluid overloaded and that they needed to "dry her out". Probably the most disconcerting of all of this is the fact that Ivy's pressure support had to be raised back up to 20 from 12. At 10, Ivy is effectively off the vent and could support her breathing needs from an oxygen supply rather than a mechanical ventilator. Because action wasn't taken sooner, we are now faced with the weaning process once again to get Ivy back to where she was. Not the kind of thing any of us want to face, especially when things were going so well. The CT scan was done so that the doctors could better understand what actions to take going forward. I know I reported on the web site no major surgery, but they will still need to take some action to get things going in the right direction. There is some consensus that the surgery that will be performed can be done at Palomar and that a transfer won't be necessary. This is a very good thing for us as the transfer would be risky. My use of the term major surgery may be a bit misleading in that any surgery is major. What I meant is that they no longer think that they will need to open Ivy's chest to repair the damage. at least, not to the extent they had originally told us. My understanding at this time is that the suggested approach would be to possibly install a drain tube to attempt to clear the chronic infection that lead to Ivy's sepsis. Once that is dealt with, any additional actions, such as closing the fistulas, could be addressed. The doctors are supposed to be meeting again this week to review the results, but we are not aware of it if they have met, or what course of action will be taken going forward. I am hopeful that we will know something soon. It will probably mean that the doctors will want to have another care conference, which offers us a chance to talk to all the doctors at once. This is a great concept, but the problem in the past has always been that one or two of the doctors would make it and the rest couldn't, not making for the most productive meeting. Last week, Ivy told me that she wants to be home in time for Christmas. She asked me if I thought she could make it. My first thought was that it wasn't enough time...then I remembered who we were talking about..."Yes honey, I do think you can make it" is what I told her. I passed this on to her primary doctor, who is currently at the "other hospital". He told me "okay, that is our goal as well then". I just hope that we can get past this setback and move forward to getting Ivy home. She has been pushing herself so very hard to gain strength, to heal and to get off the vent as much as she can. I can honestly tell you that no one has driven Ivy and harder than Ivy herself. She constantly shows tremendous strength. This setback has been very hard on her, she has worked so hard to do everything the doctors have asked of her. Emotionally, this is very difficult for Ivy and us all. I am confident that Ivy will beat this, I have every belief that she will triumph and be home with us, hopefully sooner than later. Ivy's strength is amazing, her drive incredible...she is so very focused on getting well and home again, back to the life a twenty year old ought to be living. May it be sooner than later...please. Once again, I am so very thankful to everyone for remembering Ivy in your thoughts, hearts and prayers. If you can, please take the time to drop by and say hello. If you can make it on Sunday, that would be wonderful...(of course, for those living half way around the world, maybe NEXT halloween ;o] ). God bless you all. With our best wishes always Michael, Kathie, Chris and most especially, Ivy