May 13, 2004
Dear All,

I must apologize for the delays in getting this update out to everyone, it has been a very busy week for us and I've been having to let Chris use the laptop at the hospital for school.  While this is a very necessary thing, it had a major impact on my progress with the updates, so please bear with me.

Ivy has had another very good week of progress.  Her ventilator is no longer on a bi-level mode and her peeps are now set at 5, her respirations are set to 20 and her airway pressures are at 6 - 10, all of which are levels that are very close to normal settings for people being removed from the ventilator.  Very encouraging numbers.  If it were not for the fistula in her right lung, she might be well on her way to getting off the ventilator.  Incredible progress in such a short time.

She was suffering most of the week with ileus, which is a condition that results when there is a non-mechanical blockage of the intestines.  This condition leads to cramping (rather severe in Ivy's case) and results in Ivy being removed from feeding for 24 - 72 hours.  This isn't good because they want to increase her caloric intake to help promote the healing process.  I am hoping that they will be able to restart her feedings today.

Besides the ileus, Ivy also has developed some sort of infection in her eyes, most pronounced in the left one.  They have started some sort of anti-biotic drops to help clear it up, but I am certain that they are bothering her very much as they are very red and inflamed.  Once again, I'm very hopeful that with time they will improve.

I took the day off to be with Ivy on Tuesday as it was her birthday.  The staff at the hospital decorated her room, brought in an ice cream cake and we celebrated her twentieth birthday.  There are Birthday Cards all over the place in her room (my deepest thanks to everyone) and she was all smiles to see so many of the nurses in on their days off to wish her a happy birthday.  The staff, including the doctors, gathered around her bed to sing happy birthday to her and she received a bunch of wonderful presents.  Ivy was smiles through it all and was a very gracious hostess in spite of the constant cramping from the ileus.  She had a lot of family stopping by to see her as well.  It was a wonderful time, all things considered.

Wednesday, Kathie and I traveled to Cedars-Sinai Medical Complex to visit with the Cardio-thoracic Surgeon who would manage Ivy's case if she were transferred there.  The doctor had received Ivy's medical records from the insurance company, but was also very interested in what we had to say about her care and progress.  He listened very intently, shared his observations and left me with a very good feeling that he was not anxious to perform any surgery on Ivy unless it was necessary.  This is a very good thing from our perspective.

He feels that as long as she is making progress, she would be best left where she is.  Moving her to Cedars-Sinai would be undue stress on Ivy and there is no medical benefit to moving her at this time.  If there were to be a major setback in her condition that would require something beyond Palomar's capabilities, or if surgery became her only choice, they would then consider moving her. wouldn't be able to support.  This is very comforting to us, because moving Ivy to Los Angeles would make it impossible for me to see her during the week.  It took us three hours to get to the hospital and it was only 100 miles from our house.  I can't imagine trying to commute to work, the hospital and to home, especially with gas at $2.25 a gallon.

Ivy is being weaned from several of her medications at this time.  Because so many are addictive, the process is a very slow and methodical one.  She is now off of the drugs to boost her blood pressure and the one for anxiety.  We are suspecting that she may be going through some withdrawals from the anxiety medication because her demeanor has been different the last night and today.  I am sure that this will pass, but I don't want her to be uncomfortable during the process.

I better close for now or I will never get this out.  I will try to be more timely next week, but I make no promises.  God bless you all for your wonderful support of Ivy and us all during all of this.  I can't thank you enough.

My Best Wishes Always