April 22, 2004
Dear All,


This last week has been one of constant change for Ivy and one of constant stress for us.  Her liver is a very big concern, because the enzyme levels are well above normal and her liver is enlarged.  With Ivy’s team of doctors trying to determine the best course of action, their suggestions have included surgery to drain her gall bladder, surgery to remove her gall bladder, or possibly a biopsy of her liver.  None of these are options that make us the least bit comfortable.


The course of action that they are taking for the time being is to allow the gastro intestinal specialist review all of the medications that Ivy is being treated with and determine which are most likely to cause the elevated levels and replace them with drugs that Ivy’s system might be more tolerant of.  While we are still in a “wait and see” mode, Ivy seems to be moving in the right direction as her lab results were moving towards more normal levels as of this morning.


Ivy’s lungs are “slightly improved” according to her doctor.  They are more compliant and show a very small reduction in the ARDS, which after the set-backs of last week, is wonderful news.  The doctors are not admitting this to us directly, but we found out that Ivy had well over three liters of fluid “on board” last week and was so “wet” that it is a bit of a miracle her condition wasn’t set back even further.  As the week progressed and more of the fluid was removed, her pulmonary function has improved and the ventilator pressures have been lowered to a high peep of 36, and a low peep of 16 with Ivy receiving 65% oxygen and saturating 100%, a big improvement over last weeks numbers.


Ivy was bronched this morning because there was blood in the mucous that was suctioned up from her lungs.  We were very apprehensive about this, but the doctor was not overly concerned, saying that it was due to the irritation from her having to be suctioned so often.  The RT’s have been suctioning her about every two hours, so her trach area was very irritated.  He was also able to remove a few mucous plugs that would have been an issue in a few days.


Probably the biggest change this week is Ivy’s awareness level.  Because her medications have been changed so much (many of them greatly reduced in dosage), Ivy is awake for longer periods of time now

and much more aware of her surroundings.  This is wonderful when she is in good spirits, but it is very heart breaking when she cries and mouths out words asking us to “take me home” when we know we can’t.  Telling Ivy that she is safe and that she is getting so much better can sometimes help to calm her down, but it doesn’t ease the heartache that we feel.  We will get you home as soon as we can baby girl, just as soon as we can.


Ivy seems to enjoy watching TV and “talking” to her nurses.  She is allowed to have some small ice chips, which must be really soothing to her throat.  Because of the trach tube, she can’t eat or swallow anything, because her throat is blocked.  As a very special treat, Ivy is now allowed to have popsicles!  The smile on her face when the doctor said she could have them was tremendous.  Kathie and I went right to the store and got her favorites, tangerine and lemon’s.  Seeing the delight in Ivy’s eyes when was enjoying her popsicles must have been very special, but unfortunately for me, she was given them when I was at work.


Tonight Ivy is “watching” a re-run of Friends on the TV and “talking” to her nurse, Kathie and I.  When we ask if we can wash her face with a washcloth, Ivy “mouths” to us “No, I want to get up and take a shower”.  Kathie told her that as soon as she is better, she could take a shower, even if she has to hold her up.  Ivy mouthed out “I am fine”…  I think she really wants a shower.


Ivy’s nurse today was telling me that we will be seeing her awake more of the time now and that she will need us around her to keep her calm, especially in light of the breathing rate she is currently on, 46 breaths a minute.  When she becomes excited or agitated, she expends oxygen at an incredible rate and drops her saturation levels very rapidly.  Because her medications are being lowered to reduce their impact on her liver, Ivy’s level of sedation is a decreased and she is much more likely to cause her saturation levels to drop.  Everything is such a delicate balance.


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