June 13, 2004
Dear All,
It seems that the last few updates have all been very difficult for me to write...the days have rolled into one continuous time period with no real signs of progress and numerous setbacks that have plagued Ivy lately.  Being so "tied up in the moment"  made it very difficult for me to focus enough to write the updates.  Through all of this, your support has been what helped us all to face each day and each new challenge. 
The reason I'm writing this update today is to share some good news and some very exciting news.  The good news is that after days of fighting various infections, Ivy has been able to be removed from CRRT without her fever spiking!  She did have an elevated temperature last night, but it was never any higher than 100.1 degrees.  This is a huge improvement over the temperatures spiking as high as 103.5 degrees that we were faced with earlier in the week.  It tells us that her body has been successful in fighting off the bugs that were in her lungs and bloodstream.  This is a wonderful improvement.
Ivy's original pulmonary doctor came into the hospital this morning to check on her.  He has been at Pomerado Hospital for the last few weeks and will be returning there after the weekend.  Even though he wasn't the on call for pulmonary this weekend, he wanted to come in and see to Ivy. 
The night nurse had run an ABG because the oximiter probe was jumping all over and she wasn't sure of Ivy's saturation level.  Her PCO2 levels were 56 and the PO2 level was 175, the highest she has ever had.  While this is wonderful because it shows her lungs are working very well, it is also a bit troubling because it means she is receiving too high an oxygen level.
The doctor adjusted her ventilator settings to reduce her pressure to fifteen (from seventeen) and lowered the supplied oxygen saturation to 50% from 60%.  He has also adjusted her PEEP from 5 to 3.  Kathie and I were very pleased to see these changes being made because it shows she is finally making progress.
He left the room after chatting with Ivy for a few moments, pleased that he was able to make these changes and show some progress.  Kathie and I were thanking him for making the positive changes we had been waiting so long to see.  It was only a moment or two before he came back into the room and told us that he wanted to try something.  He adjusted the ventilator to a point where Ivy was breathing completely on her own, with no support from the respirator at all.  Her volumes actually improved!  He then told the RT (respiratory technician) to set her up to breath through a "mask" that is supplied with oxygen and fits over her trach tube. 
Ivy was breathing 100% on her own today for almost 1-1/2 hours!  No ventilator at all!  This was an incredible step forward for Ivy!  She is resting up right now, back on the ventilator support, but she will be put back on the mask as she is able to tolerate it during the day, then she will be put back on vent support while she rests at night.  For the first time in over six months, Ivy was able to breathe totally on her own!!  This is the most fantastic accomplishment!!
But perhaps even more incredible is that Ivy was fitted with a Tracheostomy Speaking Valve that actually allowed her to TALK TO US!!  While it was not exactly her voice, IT WAS HER and we could hear her speaking to us once again!!  Ivy was able to share her exciting news by saying Hi to Aaron and Sam when they came to visit today.  It was so wonderful to hear her voice her feelings once again.
We are still in a "holding pattern" as far as the transfer to Cedars-Sinai is concerned.  I am beginning to suspect that the doctors were purposefully  delaying any transfer actions until after Chris was out of school for the year.  The intent as we understand it is for the surgeon form Cedars to come down and visit Ivy here at Palomar so that he can study her case first hand, if only for a day.  That way they can be better prepared for her when the transfer happens.  I guess at this point there is nothing we can do but wait and see.
I also wanted to take a moment to share something from me as well...Reading the wonderful posts on Ivy's site, the e-mails of encouragement and the notes to Ivy and us all in the guestbook have helped us all so very much...I am still in awe of the support Ivy has received from AFI, the DF, her college and high school and people from all over the world who have taken the time to send her words of encouragement, prayers, thoughts of kindness and healing, and some very special gifts...all of you have been such an incredible help to us, I can't possibly thank you enough. 
I know in my heart that it is because of all of your support, we have been able to be there for Ivy.  And because of all of the prayers and kind thoughts and wishes, I am able to share this wonderful news with you today...God bless you all.  Please continue to pray for Ivy.  She has come so very far, making another major step this very day.  But there is still an incredibly difficult journey ahead and with your prayers and kind wishes to help her, Ivy will be home with us once again.  Thank you all so very much...
With My Best Wishes Always,