August 7

Good Morning Dear Family and Friends,

I'll try to be as succinct as possible - yet give you as clear a picture as I can about where things stand currently.

Due to some miscommunication, the CTA (CT scan with angiogram) on Thursday couldn't be done.  When we got to the hospital Thursday evening, they told us that it had to be scheduled  and although they had her orders for it, she hadn't been put on the schedule.  So we called the next morning on the way to the hospital for the scope and they put her on for 11:00 am.  Unfortunately, because Sophia didn't wake up from her surgery well - she was crying and unhappy, when we went down from the recovery room to Radiology, they weren't able to complete the scan.  They were patient and tried for about 45 minutes and at one point, it looked promising - Sophia was quietly laying in the scan machine on her back, arms above her head holding Glenn's hands as he talked to her.  But when the tech put the contrast solution in the IV port in her hand, she felt the warmth as it went in and started crying hard and pushing up her chest.  The tech had to stop right then.  The contrast solution takes only 10 seconds to  work and during that 10 second period, Sophia needed to be perfectly still and breathing quietly.  Due to the composition and side effects of the contrast solution, it can not be re-administered for 24-48 hours.  So we have to reschedule the scan - and the next time they are doing it with sedation.

The scopes with Dr. Cotton and Dr. Wood went well - they were able to see that her tonsils aren't hindering her ability to breathe, Dr. Cotton didn't even feel they were grossly enlarged.  They could see that her upper airway and the branching down in her lung look normal - "pristine" is what Dr. Wood said.  They don't have any excess fluid in them, etc., they aren't abnormally shaped.  But at the point of the slit, Dr. Wood said that he was able to see pulsing - which he feels is the aorta pressing against the airway.  He had talked with us prior to the scope surgery yesterday morning and said that he suspected the trachea is twisting around and being pressed upon and pulled away from the opening into her lung by the aorta.  So what he saw inside seemed to confirm his suspicions.  However, the CTA images are critical for him to be able to know how to proceed.  He needs a clear picture of what is happening *outside* her airway, now that he knows what the inside looks like.  The very good news is that he doesn't feel it is "the fire alarm I expected it to be" - meaning she is not in immediate danger; we are not as under the gun timewise as we were concerned.  He took a piece of paper and rolled it up and blew gently through it - saying that is like breathing through a trachea.  Then he said that for Sophia, because she has a "dynamic" airway - the floppy cartilage, which is also being compressed- when she has increased physical activity which requires her to breathe harder, hers would look more like what would happen if you took the same tube of paper, and blew very hard and fast through it.  As he demonstrated this to us, the paper he was breathing into was collapsing inward and crumpling, and then opening up again. So he has told us to try to keep her activity level low for now.  So - as long as we can keep her quiet and not very active, she will be comfortable.

Crystal(Dr. Cotton's nurse) called us on our way home from Cincy and told us that we need to get the scan images very soon, as well as see the cardio surgeon, Dr. Manning.  She gave me the number for Dr. Manning's office.  After I talked with her, I called his office and was told she was already on the phone with their nurse making arrangements for the scan to be scheduled the same day as a visit to Dr. Manning.  Dr. Manning's nurse called me back to let us know they are working to get Sophia in as soon as possible - and they would schedule her CTA and her visit with Dr. Manning and try to let me know on Monday.  

Sophia was just happy to be coming home.  She didn't say much at the hospital except, "I don't like today."  She has been my little shadow yesterday and today, constantly holding the little stuffed crocodile she calls "Alexander", that a nurse gave her yesterday.  She and Isabella were sitting next to me on the couch yesterday afternoon, and Isabella said something about wanting a little toy horse like the one Daddy gave Sophia at the hospital.  Sophia looked at her very quietly and seriously and said, "Isabella, it's ok to wish you could have my toys, but don't wish you were me.  I had to have things done to me today that hurt me.  They hurt my arm and my hand.  And the worst thing was that Mommy and Daddy had to go away.  They couldn't stay with me and I was scared."  Then she looked at me, and leaned against me quietly and said, "I can't talk about it anymore."  

It's hard to explain our emotions right now.  The anxiety of feeling that she could have respiratory failure at any minute is greatly relieved.  But I think I was hoping that if we could just get her there, once we did, they would know exactly what to do and just do it - yesterday.  But, we do feel we're where God wants us to be right now - on the right track with people who aren't intimidated by her issues.  Dr. Wood did tell us briefly that he is already considering possible courses of action - replacing the implant is one, but he's not sure it's enough, or slicing her trachea and pulling it out from behind the aorta and reconnecting it on the other side of the aorta so it can't be pulled over again.  But he didn't talk at great length about them - instead told us that he needs more information before he can proceed.  And other doctors to consult with about her.  One nurse there told us yesterday that Dr. Wood is typically very conservative and won't say much until he is sure of his course of action.

Thanking you for praying for her seems an inadequate way of expressing to you all how much we do appreciate it and desire your prayers.  Truly - your prayers are so important to us- and frankly, knowing that you are praying is so encouraging - so thank you for telling us you are.  

We love you all,
Kelly for the Orr's

late summer 2009 - twin love