CHAPTER THIRTY ONE June 23, 2005 Dear All, It has been so very long since the last update that I have quite honestly lost track of where I was in their progress. This will be a combination of at least two update attempts that were written at different times. One was after Ivy’s surgery to halt infections and the second as we waited for Ivy’s line change surgery to be done. Other than adding these two paragraphs to the original letter, I have not changed anything. This is a true reflection of the time when this was happening and true to Ivy’s story. With this chapter in the book of Ivy, I will be ending Book 1 of the Book of Ivy. With her move to the IMC, everything is changed. This is truly a landmark in Ivy’s story and a good place to “begin again”. It is also a time for a bit of a face lift for the site. I am hoping to recruit the help of some dear friends to make some subtle changes to the site. Hopefully, if all goes well, these changes will be in place before the end of July…until then… PART I It has been more than a month once again since the last update and Ivy's surgery. While we were hopeful that this would be the end of the infections that have caused such a disruption to her healing, I am afraid that this just wasn't to be. Over the last two weeks, Ivy has been dealing with yet another infectious episode. Her White Blood Cell (WBC's) became elevated and her breathing became more labored. It seemed as if we were right back to the same old vicious cycle. In some ways we were, but with a couple of key differences…the doctors insist that Ivy was not septic, which is in their minds is very important. The primary infectious disease doctor did not feel that antibiotics were called for and wanted to "see what would happen"…easy for someone who wasn't spending his days at the bedside to say. Very troubling to Kathie who was there with her all day to witness the discomfort. I can only surmise that in his eyes we should allow Ivy's body the opportunity to deal with this latest episode on its own. His partner, who came on during the weekend, felt that Ivy's situation was one that anti-biotics were called for and put Ivy on some to control the infection. When the primary doctor returned, he was disappointed that the anti-biotics had been started, but he did leave the treatment in place. The second thing is that the infection was not as "disruptive" as they had been in the past. We were not facing the horrible back-slides that had plagued us so heavily before. I do agree that the severity of this infection does not seem nearly as bad as they had been. We have had to deal with a decrease in saturations and also her blood pressure, but again, not the devastating changes of the past. In the last few days, we are seeing an improvement to Ivy's comfort, but just this morning her WBC's were continuing to show a trend up once again…I can only hope that this will be the "bouncing" that has happened over and over and not the sign that we will be very rapidly returning to another infectious episode. Now, there have been some very incredible changes as well…I had eluded to these before, but Ivy didn't want me to tell anyone about them until she was able to surprise all her family that visits. So, now that most of the family have seen this for themselves, I can finally share some very exciting news. It was two days after the surgery that Ivy's pulmonary doctor told her that she should begin the "trach trials" again. This is where she is removed from the ventilator and gets her oxygen supplied via the trach collar. This is a mask (of sorts) that goes over the trach tube. He wanted Ivy to spend the days off the vent, then go on the vent for the night. We were all a bit afraid of this, but it was wonderful to see once again. Well, for the first two days Ivy would spend the days on the trach collar, then go back on the ventilator for the night. It was amazing to see her without the ventilator. Her saturations were actually better off the vent than they were on it. The doctor was very pleased and told Ivy that once she could go two days without the vent, he would take her off of it completely. Kathie and I were hoping that Ivy might be able to do this after a couple of weeks, but we were wrong. Ivy decided that she would surprise us. The next morning when Kathie arrived at the hospital, Ivy was all smiles. She spent the whole night off the ventilator! Not only that, but she has not been back on the vent since! They actually rolled it out of her room after three days and we have not seen it since! This is the biggest step Ivy has made towards recovery to date and we are so incredibly proud of her for it! She has proven to everyone that she is fighting this with everything she has and has exceeded the doctor's expectations for her. To see the grin on the pulmonary doctor's face was an incredible sight. Ivy is now trying to get used to a nasal cannula instead of the trach collar. When she is on the nasal cannula, the trach is capped off and Ivy can speak! This is her voice again, and it is incredible to hear her speaking once again! Not some "plastic" voice from a membrane, but actually Ivy's voice…wonderful beyond words. Of course, the real significance of this will be that once Ivy can go three days on the nasal cannula, they will be able to remove the trach completely! This is what we were working on when Ivy was hit with this latest infection. Now, this does not mean that she is healed by any means, but it does show considerable improvement in her situation. The fistula that exists from her chest tube insertion points is still a direct communication path between her right lung and the outside world. Because this limits the effectiveness of her right lung to oxygenate blood, and reduces greatly the volume of oxygenated blood available to her heart, her kidneys are still in a "hibernation" mode. Her nephrologists still feel that there is a chance that her kidneys might recover if her blood volume were to improve. This will not be possible unless there is a drastic improvement in the condition of her right lung. Now the doctors still tell us that the lung can regenerate, especially in someone as young and strong as Ivy. But as long as the fistula is still there, it is doubtful that this improvement can happen. Since the surgery, a drain tube (it is essentially a chest tube) is within the fistula area. The idea is to drain the infectious bacteria from the site and allow it to heal. It also created a vent to allow the pressure to be removed from this area. Of course, the best part of this is that now that Ivy is no longer on the ventilator, there is no pressure to cause a pneumothorax. As I type this, we just got the results of an x-ray that shows the position of the drain tube. For the last few days, several of Ivy's doctors have been trying to decide what to do about the tube. Because the stitches that held the tube in place were torn when Ivy was lifted in her bed, the tube was free to move around in the wound. This has been a very big problem for Ivy because the movement of the tube has put it in contact with nerve endings in the surgery site causing her excruciating pain. The thoracic surgeon who has been part of Ivy's care since she first came here made the decision to start backing the tube out after Kathie let the nurse know the tube had shifted lower in the wound. For the last two days, he has had Kathie move the tube out about an inch each day. It is incredible that the surgeon would have Kathie do this. Even the nurses were shocked to hear of this. It shows an tremendous amount of respect and faith on his part to have Kathie do this, and now today, he has directed Ivy's nurse to assist Kathie in removing the tube. Amazing! They will be dressing the surgical site in a manner that will still allow the wound to drain as it heals from the inside out. This might well be the answer to the fistula issue, but at this time, we can only hope and pray that it is. I had mentioned on the site that Ivy had left the hospital to have an MRI scan done on her knee a couple of weeks ago. It showed that there was soft tissue damage that was causing Ivy so much pain. This most likely happened in the accident. They have determined that Ivy should use a brace on the knee during her physical and occupational therapy sessions. Ivy told me that even though she was only outside for a very brief time that it was a wonderful experience just the same. The center is only two blocks from the hospital and it was a very quick trip, but I have to admit I was very apprehensive about the whole thing. Of course, being off the ventilator made the whole thing a lot easier. Ivy has really been a trooper through all of this. She has been sticking to her OT and PT in spite of the infection and the pain in her knee. Some days it is hard to do, but she always does her best. I am so amazed by her strength and tenacity in the face of all she has been through. Thank God above for her incredible drive. In an effort to move forward with Ivy's renal care, the doctors have decided to once again try hemo dialysis to filter Ivy's blood. This will hopefully allow Ivy's kidneys the opportunity to "kick in" once again. What they have changed is their approach. They will use the hemo dialysis for three hours each day to filter the blood, but they will not use it to remove fluid. They will continue the CRRT using it to balance her fluids only. This allows the hemo treatment to be much less aggressive than it normally would be. Yesterday, the third day of treatment in this manner was very scary. When we came into Ivy's room, she was so sleepy that she could barely respond to us at all. After spending the greater part of the day worried, the nurse and Kathie came to the conclusion that the CRRT had been removing a great deal of the dilated that was being given to Ivy for pain. Because she was no longer being dialysized continuously, the level of dilated was overwhelming her now that wasn't being removed from her blood. Poor Ivy was so overdosed that she couldn't even respond. Because this drug is usually metabolized in the liver, not the kidneys, they did not anticipate that the dialysis filter would be able to remove so much of the drug. With the reduction in filtration time to three hours instead of 24, it didn't take long before it overwhelmed Ivy. With the dose adjusted down, Ivy is now much more alert, which is a very good thing. I am so very glad that Ivy's nurse yesterday did not stop trying to figure out why Ivy was so "out of it". Because she kept after the doctors, they were able to make the adjustments that got her medications back under control. PART II As I look back to the unfinished chapter, I realize just how much has changed since I wrote it…and how very long it has been since I have updated everyone. I will do my very best to have a minimum of weekly updates on the site and to try to have these updates no longer than a month apart. It has become more and more difficult to do this, both because of the incredible push we are under at work and the amount of support that Ivy requires from us each evening (all day long for Kathie). I can only hope that everyone can understand this and bear with me for these way too long delays. I say this because everyone’s support has been so very important to us all. I cannot begin to express how much it means to read the posts and emails, to see the cards and letters that have been sent to Ivy and us all. Each and every one of you help us all very much. This morning, we are waiting to hear as Ivy is undergoing surgery to replace a triple lumen and dialysis catheter. This is necessary because of the latest septic episode that Ivy has been through. It is especially disturbing to us because it is the direct result of poor nursing practices. I say this because it was very apparent to me that several of the staff had become very lax in how they handled Ivy’s lines. With the changes in Ivy’s status, she is no longer a “one on one”, which means that she shares a nurse with another patient. This makes it even more important that proper techniques surrounding cleanliness are maintained. The staff infection that caused this sepsis entered Ivy’s system through her lines. This happened because Ivy’s nurses would come in from another patients room and handle her lines ungloved and without washing their hands. When I asked one of her nurses to glove, she was very indignant about it, telling me that she was “always careful”. As the result of this carelessness, we are now waiting, worried, as Ivy undergoes yet another surgery. Because of this, Ivy spent her 21st birthday in agony, having to have a visit from her cat, a call from AFI and a party on the patio all postponed to another day…Bad enough to spend your 21st birthday in the hospital without having to fight a severe infection that was caused by someone not doing their job correctly. Okay, now that I’ve vented a bit, let me continue with the update. Ivy has been successfully moved from 24 hour dialysis to the more conventional hemo-dialysis. This will, hopefully, give her kidneys the chance to recover, if they can. Her primary renal doctor is still very optimistic that they can recover if we can restore the volume of blood flow her right lung can profuse with oxygen. I find this to be very encouraging, but we are still not sure that they can ever recover fully. Only time and continued good days will tell. The biggest challenge that Ivy faces today is her nutrition. She has such a restrictive diet because of her renal condition and the fact that she is vegetarian. It has been an incredible struggle for Kathie to find foods that she could prepare for Ivy that meet the restrictions of a renal patient who is vegetarian. While we have some support from the hospital with this, they have not been able to meet Ivy’s dietary needs, leaving it entirely up to Kathie to do this. To further complicate matters, Ivy has been suffering with nausea and heartburn, making it very difficult for her to eat. In the last day or two, this has improved somewhat, but the lack of proper nutrition has impacted her ability to heal. The caloric intake and protein requirements are incredibly difficult to meet on a vegetarian diet. This gets even more difficult when you have to regulate the intake of phosphorous and potassium on top of everything else. PART III Back to (almost) current day. On Friday, May 27th Ivy was moved to the IMC (intermediate care unit) on the seventh floor. With this move, Ivy faced a number of changes that we feared would be very difficult. New staff, new environment, new challenges. This move brought with it the end over 500 days (I believe it is 514) in the Critical Care Unit. It saw all of us moving from what had become our second home to a third. Without any closure, we are now all on a new path…so it is only fitting that Book 2 should begin. I cannot begin to thank everyone for their continued support of Ivy and us all. Please know that you have all been a part of Ivy’s story through your prayers, kind words, thoughts and deeds. Because of you, we all are comforted. Please continue to send your prayers and words of encouragement. They mean so very much to all of us. We take great strength from the knowledge that so many people care about our family. Each note posted and every card and letter sent help the time to pass with a bit of comfort and reassurance. So many are the times that Ivy will feel forgotten and I only need to open the site and read a post to her, or yet another entry to her guestbook. I am forever in your debt…thank you and God Bless. With our Best Wishes Always, Michael, Kathie, Chris and most especially, Ivy