UPDATE APRIL 7, 2004
Dear All,

As I write this, it comes to mind that this Friday Ivy will have been in the hospital for four months…nothing I would have ever expected to happen, even during our wait outside the surgical area on December ninth.  Thursday we are having another care conference with the nurses and doctors to go over where we are and what will be happening going forward.  We are anxious to know what the doctors feel Ivy’s condition is and what the approach will be going forward.  We are also very apprehensive as everything we are being told leads us to believe her stay in the hospital will continue for some time to come.

Tonight, Ivy has a new nurse who has never cared for her before.  She is an experienced nurse, but Kathie and I are both very nervous to have someone who doesn’t know Ivy caring for her, especially on the night shift when the doctors are not readily available.  Fortunately for us, she is very receptive of our input and professional enough to overlook Mom and Dad’s idiosyncrasies when it comes to their daughter.   Even though I’m sure she is a wonderful nurse, it will not be a very restful night for us.

The week, unfortunately, finds us slipping back once again.  This morning Ivy is resting  and appears to be comfortable.  Her sats are currently 100%, but on 65% oxygen.  While this isn’t the 55% we had at the time of my last update, I guess I shouldn’t expect it to be much lower than it is, as Ivy has been bronched at least every other day all of this week.  When Ivy is bronched, she is put on 100% oxygen and must be slowly weaned back down.  With a new procedure being performed each day (this has been the case most of the time), Ivy hasn’t really had the time she needs for the saturation levels to recover from the previous days bronchoscopy.

She is tolerating the procedures very well, in spite of the need to raise and lower her oxygen percentages.  The doctors tell us they are still seeing things a little “cleaner” each time the bronch is performed, which is good to hear.  The bi-level settings are still being used on the ventilator, but there were no changes this week to the peep levels.  Ivy’s doctors want to get her to a steady and consistent 100% saturation level at 55% delivered oxygen before making any additional changes to her pressures.  This probably won’t happen until the bronchoscopies can be discontinued.

Ivy’s doctors tell us that these constant bronchoscopies are part of the healing process, but it is very disconcerting to seem them having to be done almost every day.  The lead pulmonary doctor performed the bronch today and was very pleased with her progress.  He feels that Ivy won’t need the procedure tomorrow morning, which is good.  She improved her saturation levels during the night and hopefully will not need to be bronched this morning.

Ivy’s nurses are taking a different approach to her sedation, using as little as possible to maintain her comfort level.  This means she is more alert.  She continues to have periods when she hallucinates and becomes very agitated.  This usually leads to coughing fits that cause her sats to drop very rapidly.  Her face gets bright red to purple when this occurs, which makes the drop in saturation even more frightening to us.  The nurses are able to stop this very easily using medication that puts her quickly to sleep.

As we enter Ivy’s fourth month at the hospital, we feel almost for certain that she will be spending her next birthday here in her room.  May eleventh will be Ivy’s twentieth birthday.  We would really appreciate it very much if you could please send Ivy a card for her birthday.  I feel rather funny and embarrassed to ask this, but I know how much this would mean to her (and us too).  I was also hoping that some of the DF could pass this along to AFI and ask if they would please sign and send her a birthday card…this might just make things a whole lot better for our dear daughter.

As a note, I am working (as time permits) on a web site so that I can post the updates as well as provide a place where everyone can post a note to Ivy, ask us a question, or get a “mini-update”.  The site was donated for as long as we need it, which was a very wonderful gesture that I am so very appreciative of.  I am planning to have it functional as soon as next week and invite everyone to drop by, even if just to take a look around and say hello.  I will include a link to the site in my next update.  I must give a special thanks to Mike for making all of the updates available on his web site (  He is a wonderful friend and his generosity has been endless.  My thanks to you as well sir…I am forever in your debt.

Once again, I need to thank you all so very much for your continued support of Ivy during all of this.  I cannot even begin to tell you all how much it means to Kathie, Chris and I to know you all care enough for Ivy to send your prayers, well-wishes, kind thoughts, cards and letters.  I continue to be humbled by the support we have received from you all…may God Bless every one of you.

With Our Best Wishes Always

Michael, Kathie, Chris and most especially, Ivy