UPDATE: March 5, 2004
I must, once again, apologize for the time it has taken me to write this update. As I type this, Ivy has been changed from 24 hour dialysis on the CRRT system to 12 hours on and twelve hours off. As I understand it, this is to try to wean her off of the treatment over time. She is stable, with good oxygen sats of 99 - 100 percent on 90% oxygen (changed because of problems with being removed from dialysis treatment), but has had several complications that have occurred since I last wrote an update.
Ivy developed a rash that first appeared as a small patch on her chest then later spread up around her neck, over her shoulder and on her face. Because it had raised blisters, it was originally thought to be shingles, but the cultures have never been able to identify exactly what it was. It is both puzzling and troubling as any infection is very serious for Ivy, especially as tenuous as her condition is.
She has also had blood cultures come back positive for infection, so she is being treated with several broad range antibiotics. The cultures won't be "grown out" until Sunday or Monday, so we sit and wait. We don't know how these were passed to Ivy, but know we must keep a careful watch to ensure it doesn't happen again.
Ivy's kidneys are still shut down. The Nephrology doctor feels that this is because of the changes to her dialysis treatments and that they will "come back". He had originally tried switching Ivy to hemodialysis (where they would come in once a day for a three hour period) but it proved far too aggressive for Ivy to tolerate. They then decided to go back to the CRRT system for twelve hour periods to handle her fluid removal.
Ivy seems to tolerate this, but she spikes a fever every time she comes off of her treatment. The doctors and nurses tell us this is normal, but it is a big concern just the same. Because her body is already fighting off the rash and whatever "blood bug" might be present, the added insult of on and off of dialysis must be a big strain for her.
We had the family conference with the medical staff the Wednesday morning following my last update. The meeting included a great deal of the nursing staff that cares for Ivy, the lead pulmonary doctor, her trauma surgeon and the nephrology doctor. Her pulmonary doctor lead the discussion, going over Ivy's current status and his observations. In his opinion, Ivy had shown no improvement over the previous two weeks, which was very discouraging to hear.
He did agree with me though when I suggested to him that there had been numerous improvements that were not something that the charts would show, including her healing, better saturation numbers, her tolerating turning and nursing intervention. These might be little things, but they are positive steps just the same. I believe they want to continue the family conferences about once every two weeks and I think they are a help.
This week, the lead pulmonary doctor is once again away and another doctor has taken over Ivy's care. He is an excellent doctor and has visited with Kathie every day to make sure she is informed as to Ivy's condition. He is a very caring and compassionate man as well and I am glad that he is caring for Ivy.
We are still in a "holding" pattern as we enter the third month of Ivy's hospital stay. The doctors explained how the "body glue" would work if they were to use that approach to repair the tear in Ivy's right lung. They would insert a balloon catheter into her lung and inflate it to see if they could seal off the fistula at the smallest possible bronchial path. If they can do this with the balloon catheter, they would then use the glue to seal off the opening.
This is supposedly very commonly used in Europe, but not in the United States. The doctors are in contact with other doctors who have used the procedure for their advise. If this could work, Ivy would not need to undergo surgery (this is if the glue works) to repair her torn right lung. The fact that it is not a common procedure leads us to worry very much about it's use on Ivy.
There is still some thought that her lungs could heal on their own if they are given enough time. The surgeon who put in the last four chest tubes for Ivy came in yesterday and listened to her lungs. He felt that there were definite "breath sounds" and that her lungs were showing improvement. He felt that he was able to hear this because it had been at least a week since he last listened to her lungs. He reviewed Ivy's latest x-ray and felt that it confirmed that there was some improvement, which was very exciting news...
That is until her pulmonary doctor came in, listened to her lungs, looked at the x-rays and commented that there was no change. It was very disappointing to hear to say the least. I know that being told there was no change is a much better than a change for the worse, but we are very anxious to hear that Ivy's lungs are healing.
I want to thank every one once again for all the prayers, well wishes, e-mails and cards. I'm very sorry to say that there are a few of you I still owe e-mails to...most especially *Angelic23* and musical_pixy. Your thoughtfulness is wonderful and I am once again most thankful that Ivy has such wonderful friends. The communications mean so very much to Ivy and us all. I read them all to her when she is awake and know that they all mean so very much to her. God bless you all.
My Best Wishes Always,
UPDATE: The Same Day
I found this draft today as I was writing the latest update. I thought for sure I had sent it to you...but I never did. We are now up to 16 chest tubes, not the 11 that I was writing about and there have been a couple of "quiet" weeks where we had no major setbacks, but I thought that I should forward this to you, as I wrote it back then, because it's something I should have done...and I want you to know the thought was there...
I also wanted to let you know that lately I have been reading the bible you sent...I know that if I look hard enough, I'll find some comfort there...thanks Bro...
I can't tell you, my friend, how much you mean to me right now...I have ALWAYS known that you were a true and caring friend...distance and never a face-to-face meeting be damned...
I try so very hard to keep my chin up and be as positive as I can when I write these e-mails...Ivy is a big-time fan of the band AFI...a vast majority of the ppl I send the e-mail to are also members of the Despair Faction...the fan club of the band. I wanted them all to know how Ivy is doing because they have all been so wonderfully supportive of her...they are wonderful people.
I always try to slant things to the positive, while at the same time letting them know that things are very critical and very trying for Ivy and us all...I really think that so far, I had done this pretty well....yesterday was my downfall Bro...When the doctors put in an eleventh chest tube that worked for about one hour then quit, when they told me that she was far too fragile to survive the operation that was "the only way her right lung would ever heal", when her stats crashed and we sat outside the room while the surgeon struggled to put in the twelth chest tube to re-inflate her left lung...Bro, I couldn't look Kathie in the face as she kept telling me that "they are going to kill her Michael"....
Through all of this, I have known in my heart and soul that Ivy was going to get through this...that, somehow, we would all be stronger and better people at the end of this horrrible road...yesterday I could no longer tell Kathie that I knew in my heart that Ivy would be okay because I wasn't sure anymore...
I always thought I was a very strong person...maybe not physically, but mentally and in my heart and soul...I stood at Ivy's bedside, looking at her face, telling her how proud I was of her, how much I loved her and how strong she was...She looked up at me, nodded yes when I asked her if she knew how much I loved her, and the tears rolled down her face as she cried...my baby girl knows what she is going through Mike, and she is very scared that she isn't going to make it...that she won't be okay...it was more than I could bear at that moment and I leaned over and hugged her tightly as I cried quietly to myself.
I not all that strong after all...
We are being tested Bro, I know this, I just hope we can pass the test...
I Love you Bro,