Dear All,

 

I was trying to decide if I could even write this tonight, as it has been a very difficult few days.  On Sunday, the doctors adjusted Ivy’s ventilator to lower both the upper peeps to 34 and the lower peeps to 18.  Unfortunately, it has caused Ivy to desaturate every time she would cough.  It also has raised her anxiety level to the point where she will begin to “panic breathe” (my term, not the doctors) every time she is awake.  This was happening all day Sunday, Monday, Tuesday and now Wednesday.  Tuesday morning it was so bad that the pulmonary doctor decided to set her peeps back to 40 for the high and 20 for the low to keep her oxygen saturations at an acceptable level.

 

In addition to changing the pressures, they have also raised her delivered oxygen percentage to 90%.  As I write this (for the second night – I just couldn’t finish it yesterday), after being on this setting for over twenty hours, Ivy’s oxygen saturation has finally reached 98 to 99%, as long as she stays calm.  (She did have a calm night last night and her nurse was able to adjust her to 85% delivered oxygen, but this morning it had to go back up to 90%).  Unfortunately, this is right back to where Ivy was over a month ago.  Not a good week at all, I’m afraid.

 

Kathie and I have been staying at the hospital until very late every night since Friday because of the difficulties that have plagued Ivy this week.  Monday night was especially apprehensive for us as the panic breathing was very pronounced and very frequent.  Every time Ivy would wake up (which was every ten to fifteen minutes) she would start this breathing pattern.  They would call in the RT (respiratory technician) who would suction out Ivy’s lungs to remove fluid and mucous.

 

All of this was dropping her oxygen saturation so much that she would have to be put on 100% oxygen for several minutes until she could be sedated again.  Every time this happened, her recovery (oxygen saturation) would be a little lower than the time before, until the point where Ivy was below the doctor’s minimum level order.  As it became more difficult to meet goal, a chest x-ray was taken to make sure that a pneumo hadn’t re-occurred.  

 

Monday morning the nurse on duty was changing the dressings on Ivy’s chest tubes and discovered that #16 chest tube had fallen out of the upper left side of her chest.  This was a concern because the possibility that Ivy could develop another pneumo was very high (thus the concerns over potential pneumo’s being responsible for Ivy’s degradation).  So far, we have been very fortunate that this hasn’t happened.  The opening in her chest from the tube is healing well and did not create another fistula as was caused on her right side when a tube fell out.

 

Today, they performed an ultrasound to look for any signs of a pulmonary embolism in an effort to understand Ivy’s difficulties with her oxygenation.  While I can’t begin to understand the issues surrounding this, I understand that the ultrasound was unable to distinguish any issues with Ivy’s lungs.

 

I have called Ivy’s pulmonary doctor each of the last two days to see if he had any explanation for the issues Ivy is now facing.  He tells me that he does not have an answer for me.  Medically, there is no change that would account for the circumstance that is happening right now.  He also told me that he has talked to the specialists at Cedar Sinai and UCLA and that they have no explanation either.  All we can do is “ride it out” and provide any additional support Ivy needs until this, hopefully, passes.

 

Not the kind of answer that makes either Kathie or I very comforted.  On a positive note, he tells me that her tissue looks very good when he performs a bronchoscopy on her.  He is finding almost none of the “sluffing” that he saw before.  He also stated that her x-rays this morning were slightly improved over the previous days.  How can everything look better and not be better?  I guess if I knew that, we wouldn’t need the doctor.

 

With many thanks to my dear friends Mike, Deni and Sandy of the reef, Ivy’s website is officially open.  It is a work in progress and hopefully, in time will grow to include pictures of Ivy’s room, the wonderful gifts people have sent her and maybe some of the equipment that helps her efforts to recover.  Mike, who runs the imagesculptor website, (where he has posted all the previous updates) designed and set up the site.  I can’t thank him enough.

 

The site is: http://www.thereef.ws/members/Ivys_Updates/forum/

 

Please stop by, take a look around and please be sure 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 be visiting the site every weekday, so any questions you might post will be answered in a timely manner.

 

I hope to be formatting the previous updates to HTML (with Mike’s guidance, of course) so that they can all become “Chapters” in the “book of Ivy”.  Each time I send out a new update, I will make sure it is also added to the book.  This way it will be there for everyone to see and better understand Ivy’s story.  I am very hopeful that the site is successful in providing a place to ask questions, get an update and share a thought with Ivy.  When she recovers, it will hopefully serve as an insight to everything she has endured.

 

As a final note, I just wanted to mention that tomorrow night is the last Ivy will be in the care of a nurse who has been an incredible caretaker for Ivy and has become a wonderful friend to the whole family.  She has always gone out of her way to see to not only Ivy’s comfort, but Kathie and mine as well.  We could always rest comfortably knowing Ivy was in her care.  I can’t thank her enough for the excellent care.  We all will miss her very much.  Our best wishes go with you always, young lady, you will not be forgotten. 

 

Again, I want to thank you all so very much for keeping Ivy in your thoughts and prayers.  I know in my heart she will make it through this and that you are all a very big part of what will see her through these most trying times.  I am forever in your debt, and you are all forever in my prayers.  May God bless you all.

 

With Our Best Wishes Always,

 

Michael, Kathie, Chris and, most especially, Ivy