May 03, 2004

Dear All,


I have been so very anxious about writing this e-mail to everyone that I'm having a difficult time getting it finished.  It has been edited at least three times and has suffered through a computer crash thanks to a virus, so please forgive me for the delays in writing it and any sentences that don’t make sense.  We had a very exciting and wonderful week (until Saturday night).  Ivy has undergone some very big changes and is tolerating all of them very well.  This has truly been a week of milestones.  First, though, let me update a few of the things from the last message.


Her liver condition has continued to improve.  Her levels have returned to more normal levels (still somewhat elevated, but nothing like the levels we were seeing last week.  It seems that the condition was indeed being caused by the medications that Ivy has been given.  Her levels have been greatly reduced of almost everything that she has been given and she is tolerating these changes very well.  Hopefully, with time and vigilance, her liver will return to normal functions.


The 12 hour dialysis treatment continues as there is still no urine output from her kidneys.  At the last care conference, the doctors told us that there was some damage to her kidneys that may or may not recover.  While this is very disconcerting, it is not even a concern for the doctors at this time as they are focusing on the lungs first.  At this point, we will add it to the list of things that we will "wait and see".  


Ivy has also made incredible progress with pulmonary function.  At the end of last week, the ventilator pressures had been lowered to a high peep of 36, and a low peep of 16 and a rate of 60 breaths per minute.  Ivy was receiving 65% oxygen and saturating 100%.  As of Friday evening (9:00 PM), Ivy's ventilator was set to a high peep of 24, a low peep of 6 and a rate of 36 breaths per minute.  She is receiving 55% oxygen and saturating 100%.


Saturday, the numbers were changed again to a high peep of 22, low peep of 6, rate of 28 breaths per minute and 50% delivered oxygen, saturating at 100% right now (Sunday evening). This is an incredible amount of change for such a short period of time.  This is especially encouraging in light of the pulmonary doctor's comments Friday evening (he stopped in to say hello) as he pointed out that her mean airway pressure has been reduced by over one-half of what it was last week, and this is significant progress towards healing.  Ivy's mean airway pressure is 12.7 right now.  Our "normal" mean airway pressure is about 8, so Ivy has come a very long way.


The pulmonoligst did bronch Ivy Thursday morning because there was such an incredible amount of bloody mucous suctioned up from her lungs the night before.  Evidently the suctioning the night before was very effective, because the doctor told us that there was very little in her lungs when he scoped her and other than the fact that her airways were very irritated by the suctioning  

This weekend, we saw some changes that have caused us a great deal of concern.  Perhaps it is a bit unfounded, but after such a wonderful and progressive week, it is very difficult not to find anything that moves us backwards a concern.  Ivy has been very lethargic compared to the rest of the week.  She spends the majority of her days asleep where earlier in the week she would be up for hours on end.  Her nurse today felt this was because Ivy has been undergoing physical and occupational therapy every day of the week and that she is just exhausted.  Perhaps he is right, but we are not so sure.

Ivy was also was having a very difficult time maintaining her oxygen saturation.  Part of it is that they are running her very “dry” on the dialysis machine.  This, in turn, causes the mucous secretions in her lungs to coat her lungs, making it very difficult for Ivy to saturate her blood.  When this happens, it becomes very hard to suction the mucous out of her lungs which worsens the condition to the point where her saturation levels drop and life becomes a bit of a panic for us once again.

The physical and occupational therapy are where Ivy shines.  Although I have not been there to witness the procedures first hand, Kathie tells me that Ivy works very hard to exceed expectations.  She has gained tremendous strength in her arms and legs and impresses everyone with her progress.  Her grip has really improved.  I was worried (me personally) by the fact that Ivy’s fine motor skills have not returned (she shakes a lot when she raises her arms or legs) but the nurse today told me that Ivy has incredible control considering all of the medications she is still on.  He told me that a lot of the shaking is a direct result of the meds.  I’ll take his word for it for now.

We have been telling Ivy how long she has been in the hospital lately, mostly because of her upcoming birthday.  We put Christmas on hold until she gets out of the hospital, but we don’t feel she should “miss” her birthday.  Ivy will be twenty on the eleventh of May, which is only a week or so away.  The ninth of May will be four months in the CCU, way too long a time.  In spite of this, there isn’t a day that goes by that I don’t thank the Lord above that she is still with us.

I know that there are a million things that I haven’t covered, this has been a very busy week for Ivy and the days have become one constant flow.  I get to the point where I don’t even remember which is which, so I’ll close for now and try to include anything that I’ve missed in the next update.  I do have one more quick thing to note.  Tuesday morning we will be meeting with the key doctors to discuss the “next phase” of Ivy’s treatment.  As she continues to get better and is someday removed from the vent, there will be a whole new set of issues to discuss.  Hopefully, the meeting will prove helpful in understanding this.

 Please remember to stop by The Book of Ivy website and take a look around.  Be sure to leave her a note and remember to sign her guest book.  If you like, you can register a "handle" at the reef for free (they do require an e-mail address, but it is kept private).  It isn't required to post a note, but it is nice because you can personalize your handle and no one else can use it but you.  I will try to visit the site every day, so any questions you post should be answered in a timely manner.

The site is:

Thank you once again for all of your wonderful support.  Your prayers, kind thoughts, cards and letters all mean so very much to us all.  And I really appreciate the wonderful posts that have been left for her on the are all so very special...God Bless you all.

With Our Best Wishes Always,

Michael, Kathie, Chris and most especially, Ivy