Feb 8th, 2004
I'm sorry it has been so long since the last letter...especially in light of the situation...things have changed substantially during the time since I last wrote. Let me first say that this evening finds Ivy resting comfortably with some of the best stats she has had since the onset of her ARDS.
Back to the day of the last letter...The plan was for Ivy to rest overnight, then to perform tests the following day to understand if she can keep her body oxygenated on just her left lung for any period of time. They had planned to put a tube in that would use only her left lung and leave her right lung totally at rest. We were assured that while this was troubling, it was something that needed to be done.
The morning it was to happen, I went to work as usual and Kathie went to the hospital after dropping Chris off at school. I had been at work for about one hour when I got a call from Kathie telling me that the doctor wanted me to be there...that this was a difficult and risky undertaking. He would wait until I got to the hospital to assemble the team.
This was very troubling to both Kathie and I as we were left with the impression that this would be a rather simple procedure.
As I drove to the hospital, the doctors began preparation by having a second ventilator brought into the room, assembling and going through all the preparations. When I arrived, I was taken to a meeting room (Kathie's brother joined us) and the details of the procedure and it's risks were discussed in detail. Once this was done, the doctors prepped for the procedure we all went to a private room to wait.
It was only about ten minutes later when the doctor came into the room. We were scared to death to see him there so soon. As it turned out, the tube they intended to use was too large. Because it wouldn't fit, they had to postpone the procedure. We were both relieved and frustrated at the same time. The doctor who was to perform this procedure is now gone for two weeks and a new team of doctors have taken over Ivy's care.
Since this time, we have had mostly calm and quiet days and nights, with Ivy resting and conserving her energy. The lead respiratory technician was investigating alternative treatments for Ivy's condition on the net and came up with a Bi-level breathing technique that the respirator could use to ease the stress on Ivy's lungs. Once the head pulmonary doctor reviewed the technique, he set it up on Ivy's vent and her stats have improved to the best levels since the onset of the ARDS condition.
They have also removed one of the chest tubes from Ivy's right side as the surgeon had discovered that it was actually in the lung and not between the lung and the chest wall as was intended. Removing this and allowing the wound to heal "from the inside out" should help Ivy's right side improve with time. This slow and careful approach is greatly appreciated over the hurried pace Ivy was undergoing before.
After a few calm days, Ivy's stats "crashed" yesterday when one of her chest tubes kinked when she was turned. Unfortunately, it wasn't discovered until after her stats had crashed and the nurse had to "bag" Ivy to provide oxygen. Once again, I was at work and had to make the rather rapid drive 125 miles to the hospital.
This has been so stressful for Ivy (and Kathie too...spending all these days at Ivy's side alone is very difficult during the best of times). She continues to astound me with her strength.
Ivy was awake today when her uncle Robert visited. Ivy was so excited to see him that she actually forced enough air through her throat to tell him "Hi Uncle Robert, I Love You”. It was barely more than a whisper, but she made herself heard. We were all amazed that she could be that strong. The problem is that she used up so much energy that she had to be sedated to get her stats under control again. My baby girl will never cease to amaze me.
This evening as we left the hospital, she made my whole day when she mouthed out "I love you" to Kathie and I and nodded her head yes when I asked her if I could kiss her cheek goodnight...she closed her eyes and went to sleep as Kathie and I stood by her side...Good night Baby Girl...
Please keep Ivy in your thoughts and prayers...God Bless you all.
My Best Wishes Always,