CHAPTER THIRTY March 3, 2005 Dear All, Once again, I find that it has been over a month (actually, over two months) since the last update and almost as long since I've been able to stop by the site and answer everyone's posts. As I read over the last Chapter, I realize that we were just about the same place we were back then…waiting for a move to another hospital where surgery can be done to keep Ivy from her chronic episodes of sepsis…that is, until Ivy's surgery today. Before I go any further, I want to thank everyone for the wonderful posts and emails of support. They mean the world to us all and I know that the Good Man upstairs was smiling down on us all today…thank you all so very much. Know that you all have been instrumental in helping us all to deal with this. When I remember back, this was the very situation we were facing back in June of 2004. The answer for Ivy then was Cedar Sinai, but it never came to happen. Ivy continued to show some improvement, but with each six to eight weeks that passed, Ivy would become septic and be setback, having to recover all over again…not good at all. As for the move to UCSD, it was supposedly all set and everything was a go at Christmas last year (when I wrote the last update), but the UCSD's administration became involved. They would not accept Ivy into their hospital unless they received a written transfer letter agreeing to Ivy's transfer out of Thornton as soon as she was able. This meant that another hospital had to be willing to take Ivy as a post-operative patient without knowing what her requirements for care would be. Of course, this was not going to happen, so the transfer to Thornton became null and void. The level of frustration with the whole situation has become an unbearable pressure on all of us, but most especially Ivy. I hope that no one else ever has to hear his or her daughter say "What are the going to do, sit here and watch me die?" Nothing will bring you to tears any faster than hearing a statement like that from someone you love. I don't think I have ever been as frustrated as this in all of my life. It has brought all of us to our wits end and then some. But even this wasn't the end of it all. It was just a couple of weeks ago on a Thursday or Friday when the lead pulmonary doctor calls my cell phone while I'm at work. By the echo on the line, I can tell he is on a speakerphone. He tells me that Kathie is with him and that we need to get everything ready for Ivy to move to Loma Linda on Monday. He tells us both that she will spend a week in the ICU so that she can get used to the hospital, then go for surgery the following Monday. We hear that the surgeon will be on call this weekend, so she cannot come down to meet us, but that I can go up there and meet with her. I'm hearing all of this and pretty much in shock. I don't know what to ask or say because I'm flabbergasted by the whole thing happening so quickly. Of course, because it is best for Ivy, we will do it. We don't have any idea as to how we will make it work for us, but somehow, it will. I walk away from everything at work and write a quick update to let everyone know that we will be moving on Monday. I get the word out, go back to the tasks at work when my cell phone rings again, not even a half an hour later…it's Kathie and she's telling me the move is off. It seems that Loma Linda doesn't have the capability to support the CRRT form of dialysis that Ivy needs to support her. They can do standard hemo dialysis, but even this is contracted to an external service, so once again, Ivy's surgery is postponed. So we sit and wait, hoping, praying and sometimes crying for an end to this cycle of constant promises, delays and disappointments. At the very end of January, because I was advised that "no hospital could refuse Ivy a transfer if it was a "level of care" issue if she was a medi-CAL patient". I began the process of getting Ivy accepted to Medi-CAL. It was the incredible efforts of Ivy's social services case manager that helped me with the application and saw the whole process completed in an amazing 24 hours. I started the process on a Wednesday afternoon and by Thursday evening Ivy was accepted. At the time I was doing this, I thought it would be the answer to everything, but I was so very wrong. By Monday morning, the word got back to me that Thornton (UCSD) had refused Ivy's transfer, stating that the Doctor who had told Ivy she would transfer her after the first of the year had never accepted Ivy as a patient. They stated that she was only at the hospital to "advise on Ivy's situation". Ivy's uncle, a lawyer who deals with medical care issues, began the process of trying to persuade the Administrator of Thornton to reconsider their position. Because of his efforts, the CEO's and key staff members of the two hospitals did meet on Monday of this week. Thornton continues to insist that the doctor never accepted Ivy, even as Ivy's pulmonary doctor tells them that he was a witness to the doctor's statements that she was accepting Ivy as a patient and would transfer her after the first of the year. I guess they decided not to call him a liar, at least not to his face. We have also been advised that taking our case to the media may very well make Ivy's case so public that no doctor would ever accept her as a patient. Because of this, I will most likely explain all of this to the local NBC affiliate that agreed to film Ivy's story and put off taking her case to the local community until such a time as we feel cornered once again. This is the most exasperating situation I think I have ever been through. I take the action that I thought would ensure Ivy's acceptance as a transfer patient to UCSD and it totally backfires on me as she is denied a transfer within two business days after she is accepted as a Mei-CAL patient. Even worse, when you call all of the agencies that are available to help people who have issues with medical care, you are told "I'm sorry, there is nothing we can do for you…we understand your situation, but there is nothing we can do to correct it". Of course, it is Ivy that is suffering, not me. All of this may be of no consequences though, because of the procedure that Ivy had today. If it is successful in dealing with her chronic episodes of sepsis, the additional surgery that Ivy was going to have performed at UCSD may not be necessary. The procedure has proven that there was a "pool" of infection that was growing in the area under her right breast. The surgeon reported to us that he found the area to be filled with infection. He was able to clean it up and placed a drain tube in the area that would allow the wound to be continuously drained as it (hopefully) heals. I know in my heart that this is (at a minimum) the first step in moving forward with Ivy's healing. With a lot of luck, this may be the only surgery that Ivy requires to clear the septic episodes. With these episodes addressed, Ivy should be able to heal without all the setbacks that have plagued her for so very long. After almost fifteen months, it is a long time overdue. With this surgery behind us, we are very hopeful that we can look forward to some positive days coming. It was about the middle of January when Ivy had a very serious setback. She became very sick, developing complications because of a very serious drop in blood pressure associated with the rapid removal of fluids. The doctors were trying to move to twelve-hour dialysis in order to progress with her kidneys. Her pressure support was at an all time low of 9 and her FIO2 was 45. It was decided that Ivy should be "dried out" prior to the switch and fluid was removed at a very fast pace, without regard for her blood pressure. At the same time, in an effort to reduce the amount of IV medications Ivy was receiving, they had changed a number of her medications to pill form. Because Ivy was dried out so rapidly and her blood pressure was allowed to remain low for an extended period, her pill form medications were not dissolving. This lead to problems with her medication levels and in turn her chemical balance. Ivy began to bleed internally. This lead to rapid loss of oxygen saturation and the need to return Ivy to a very high level of pressure support. It was a very serious and very terrifying situation to say the very least. Once again, we were facing a life-threatening situation and once again, Ivy overcame this setback and has made incredible steps towards her recovery. Within the last few weeks, her pressure support was set to 8, the lowest ever. This setting is just above atmospheric pressure and quite literally is only there to overcome the restrictions of the tubing that delivers the air. Ivy's PEEP setting is zero…again, the first time ever. The FIO2 was 45. For at least the last two weeks, Ivy has spent from 12 to 14 hours a day off the ventilator. This incredible accomplishment has the entire department very excited. Ivy has gained tremendous strength through all of this and it is because of her progress that they decided to move with the surgery that took place this morning. This is by far the biggest step towards getting well that Ivy has made to this date. It is my deepest hope that the surgery performed today will be the answer to Ivy's chronic infections. If this can suppress these infections, the "flap" surgery that UCSD was supposed to perform won't be necessary. I know I will be praying for this constantly from now on. Ivy is resting now as I finish this update, the 30th chapter in the Book of Ivy. She has a good deal of pain which is to be expected. Ivy is on a pressure support mode of ventilation for at least the next 24 hours, but the FIO2 has already been reduced to 65%. All of this is very encouraging. I also wanted to share a story that shows the character of Ivy. Some time back, Ivy dictated a letter of thanks to Mindy's mom for bringing her to visit. Mindy, the Chihuahua that visits Ivy and her owner were both recognize by the Mayor of Escondido as the volunteers of the year. It seems that Ivy's letter was the deciding "vote" that persuaded the city to pick Mindy and her Mom for the award. The award presentation was televised to the local community and the Mayor's office sent Ivy a copy of it. They spoke very highly of the twenty-year-old young woman who took the time, in spite of her suffering, to recognize Mindy and her Mom for their kindness. A local Escondido newspaper also ran the story and interviewed Ivy and Kathie for the article. The reporter is very interested in a follow-up article to cover Ivy's story. I also wanted to share another story that has provided a lot of community support. Kathie was driving home from the hospital to meet me after work. During the drive, she was listening to a local radio station (STAR 100.7) and a caller that was stating that "If you drive the speed limit in the fast lane, I'll make your life miserable". I was getting closer to home and switched to this radio station just in time to hear a very familiar voice telling the listeners the story of Ivy. How a careless driver, who must have been upset at this young woman driving the speed limit in the fast lane and probably cut her off short to "teach her a lesson". Kathie went on to share Ivy's ordeal. She shared with everyone our lives since this date. The nights at Ivy's bedside, not knowing if she would survive the night… There must have been over fifty posts in Ivy's guestbook that day. There is an incredible amount of support from the local community for Ivy and Kathie both. One man especially made the call "worth it" for Kathie. He wrote that because of Kathie sharing Ivy's story that afternoon, he had made a promise to himself and God above that he would remember Ivy and her fight for life each and every time he became frustrated with a driver in front of him… Once again, I thank you all for your incredible support and kindness through all of this. Ivy and all of us are constantly inspired, strengthened and "renewed" by the kind words and thoughts all of you have offered to us. Please know that there is a family in southern California that thinks the world of you all… With Our Best Wishes Always, Michael, Kathie, Chris and most especially, Ivy