May 26, 2004

Dear All,


I seem to have started almost every one of the updates with an apology for being so delinquent with the latest news, so I guess it is fitting that I find myself once again begging your forgiveness for my tardiness.  Ivy has been faced with several very trying challenges since I last wrote. 


We have had wonderful moments such as the 14th when Ivy was able to be set up in her bed for the first time since her accident and on the 18th when Ivy was taken out of her bed, put in a chair and taken out onto the fifth floor roof patio to watch the sun going down. The first time outside since December 9th.


Ivy has also had some very trying days, such as the 19th when I got the call at work and rushed to the hospital while Ivy was having seizures.  In the morning Ivy's right eye looked "blown" as the pupil was wide open and unresponsive to light.  By midday, the seizures had begun.  Ivy has also been plagued by coughing fits.  She was in a rather heavy one when she had her second major seizure of the day.  The combination of the two at once caused something in Ivy's right lung to tear.


We were there to see the emergency bronchoscopy being performed. Ivy was bleeding in her lungs.  Her chest tube was filled with blood and the bronchoscope was pulling a lot of blood from her lungs. This was horrifying to say the least. Here we were, once again, taking these steps backward after doing so well.


On the 21st, Ivy had her eighteenth chest tube put in under the CT scan system.  This was done to try to deflate a pocket of air that is in front of the upper lobe of Ivy's right lung.  The thought was that this might offer improvement to the right lung.  Unfortunately, this has not reduced the size of the air pocket.  The pulmonary doctor told me today that this is most likely an indication that Ivy will need the surgery that we have been hoping to avoid.


Over this last weekend as Ivy has become more and more aware of her surroundings and her condition, she told us that her little finger on her left hand was hurting.  An x-ray of the finger indicated that she has osteoporosis, a reduction in bone mass.  Talking to the nephrologist yesterday, he explained to me that this is very common in patients who are bed-ridden for long periods and that it is bone rot caused by lack of movement.  He also told me that he is changing Ivy to an eight hour on and sixteen hour off cycle of dialysis.


It is his hope that he can get Ivy to the point where she is tolerant of even shorter durations on the CRRT system so that he can eventually get her on a more conventional hemodialysis machine that runs for only three hours.  His thought is that this will allow her additional "freedoms" that the CRRT machine restricts her from.  My dream is that her kidneys will kick back in and she will be able to get off these treatments completely. 


Ivy told us that her jaw hurt her as well.  When she closes her mouth, her teeth do not align correctly.  They were perfect before the accident, so we were very concerned.  Today the results of the CT scans are back and we were told (thankfully) that her jaw is not broken.  As I understand it, they will be looking into muscle related issues next.  I am hoping that this is something that can be corrected without surgery.


Today Ivy's plastic surgeon was in to review the progress on her bed sores.  The one on her bottom will require the bone to be cut away to allow the wound to heal.  This is scheduled for this Friday, providing the anesthesiologist thinks she is a good candidate for surgery.  She will be tested/evaluated tomorrow.  One more trip for Ivy.


Ivy had a very trying day today as Kathie is telling her everything that is going on with her care.  We both feel that this is her right, especially now that she is so much more aware.  She was emotionally distraught a majority of the day because she is very scared that she will never be coming home again.


Kathie called me at work to let me know this and asked me to talk to Ivy on the phone to reassure her.  I was talking to Ivy and Kathie would read her lips and tell me what she was saying.  I can't express in words how, but I felt her fears across the phone and cried as I told her how strong she was and that she was coming home to us.  I told her it was a hard fight and it was going to take time, but she was coming home again.


As I said, this has been a very difficult and trying time for us.  To hear the doctors tell me in one breath how much better she is doing and then in the next tell me that she has osteoporosis, that she will need surgery, that she will be on medications to treat the seizures for the rest of her life…and then to look into her eyes and see the fear, the uncertainty and pain…no one should EVER be faced with this.


If you will, please say an extra prayer for Ivy this week.  She has been through so very much and has so very far to go.  I know in my heart that with the Good Lord's help, she will come home once again…but it is not an easy road ahead…so, please keep her in your thoughts and prayers…God bless you all


With My Best Wishes Always