Monday, August 30, 2010

August 28

Dear Family and Friends,

We thank God for your faithful prayers on Sophia's behalf!  Knowing that you are all praying has been an indescribable source of comfort for us.

Wednesday's CT-scan went well.  Sophia did great.  Although we hadn't really talked with her about the last attempt, she realized that it was important to be still and quiet to get the pictures.  As we pulled up to the hospital, she said, "I'll try not to cry this time."  Bless her heart!  We reassured her that we knew it was hard, and that she was scared, but it would be better this time since she could be asleep.  We told her she was very brave - this time as well as the other!  
As we talked in the car afterwards, I told her proud of her we were. 

Glenn and I have seen the Lord working in her during these trips to Cincinnati - how He is helping her learn more about self-control, and trusting Him to take care of her when she is afraid.  We do rejoice in this - knowing that He is using everything she is experiencing to grow and mature her spiritually, to demonstrate His sufficiency in her life - to His own glory.  To draw her even closer to Himself.

We were very impressed with Dr. Manning.  He spent about an hour with us, showing us the CT-scan images and explaining them, and the indications very thoroughly.  He was kind and gentle with Sophia and talked directly to her, asking her questions about herself.  After much conversation and questions, we have a plan for helping Sophia that we feel is best for her.  

Essentially, her implant is doing a better job than what was at first suspected.  He has not decided yet that he will not replace it with something larger, but he needs to first check the scar tissue that is surrounding it and see how firmly it is holding it in.  He said sometimes it can be pretty "sticky" and cause more problems trying to remove it, than if he just left it for now.  He said that around her peak growing years (about 10-12 years old), there may be more of a need for replacing it - but he was pleased with how good of a job it is actually doing at this point. 

 The slit into her lung is indeed being pressed upon by the aorta - but not as drastically as when she was a baby, prior to the original placement of the implant.  Her heart is not in the normal space, but is instead shifted over next to the implant.  But - he said he was not surprised to see it there since the implant doesn't have the supportive pressure that her lung would have had to keep it on the other side.  He said that replacing the implant with a slightly larger one would help shift it back some, but the heart doesn't respond well to being maneuvered that way, so he wants to provoke it as little as possible.  Her left lung has herniated over into the right space fairly significantly, but again, he wasn't surprised by this and said it is to be expected to a large degree since it is working the load of 2 lungs and has that capability of movement based on the extra space between the implant and the area that her R lung would be taking up.  He told us that lung tissue is much more accepting to being "pushed around" and so he is more comfortable manipulating it, than her heart.

So - he is going to perform a surgery called an aortopexy - and possibly replace the implant at the same time.  Typically, in an aortopexy, the aorta is sutured to the sternum, to provide relief to the airway (or windpipe- as he called it).  So it is suspended above the trachea - attached to the sternum, which also pulls away the pulmonary artery at the same time.  Since so much of her left lung is blocking the sternum, due to the herniation, he feels it would more effort to the tissues  - too far away after he tried to avoid the lung tissue - to attach the aorta to the sternum.  Instead he wants to attach it somewhere closer, perhaps a rib, using the pericardium, the sac around the heart.  He has performed this procedure many times before (isn't that incredible?) - although it is more commonly attached to the sternum.  

Before he does the surgery, however, he wants all the operative information from our hospital from her pneumonectomy (which was done when she was only 6 days old) and from her original implant surgery (when she was 12 months).  He also wants to have an echocardiogram done.  He said it is possible that because the lung is oxygenating all of the blood for her whole body - a job usually performed by 2 lungs - blood pressure could build because of the force of moving so much blood through one lung.  Symptoms include shortness of breath - which of course, she has had.  While he doesn't assume this is an issue, he said it is best to check it before performing surgery.  If it is an issue, it can be managed with blood pressure medication - and he feels it is better to have that information at this point in her physical development, than to not check it and it become a dangerous issue for her later.  Currently, the echocardiogram is to be scheduled the same day as the FEES study she is to have on September 23.  After he has seen the results, the surgery will be scheduled.  Probably about 1-2 weeks following the echo.   Her hospital stay will probably be about 3-4 days, barring complications, and her pain management will be pretty good - she should be on Tylenol with codeine by the time we are home.  He expects she will self-monitor her activity level well on her own afterwards, and hopes that she would be resuming her "norm" by a few weeks.

Sophia sat quietly during the visit.  I ended up giving her my notepad and pencil when she whispered in my ear, "I'm ready to go home now" about halfway through our time with Dr. Manning.  He had been going back and forth from the different scan images as we talked- and we were able to see several pictures of Sophia's chest, her trachea and the aorta and pulmonary artery.  Some of the pictures were in 3-D and he was able to manipulate them, rotate them up to 360 degrees, on the computer.  It was amazing to look at those images - and see what is happening inside of her - in color pictures on a screen.  He was able to do one "layer" at a time - so just the trachea, then trachea plus aorta and pulmonary artery, etc.  

Sophia had been diligently and quietly drawing while we talked.  After some minutes, she stopped, smiled, and held the notepad out to us.  She had written "me" at the top of the page.  Underneath, she drew a picture of her trachea - just as it had looked on the screen.  One main bronchus, with rings of cartilage encircling it from the top down to the 3 little "branches" splayed out like fingers toward the left.  The Dr. was surprised - and smiled broadly.  She showed us other pages, copies of the ct-scan images we had looked at, of the different views, the one with the aorta pressing on the trachea, etc.  All titled simply, "me" at the top of the pages.  Then on the way home, she drew several more, including a cross-section that had the windpipe hole, her left lung, and what I'm guessing is the pulmonary artery.  She was pretty pleased with them.  

Typically, children draw animals, their mommies and daddies, etc., Sophia drew her airway, aorta, lung.  :)

We can't adequately express our gratitude with words.  God's obvious care of her - His wisdom and guidance regarding her doctors, the visible fruit of His Spirit at work in Sophia.  And your prayers for her.  It seems I really can't say it enough.  But, again.. thank you!  

We will certainly feel most relieved when the surgery has been successfully accomplished, but God's peace prevails.  

Hope you are all well- We send our love to each of you and your precious families.

Kelly for the Orr's

Fall 2009

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