A Very Good Day

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Remember Iris’ cardiologist, Dr. Armsby, telling me that there will be some bad days … but there will be good days too?  Wednesday was a very good day.

I received a call from Dr. Milczuk, Iris’ otolaryngologist.  Her team of doctors had met once more to discuss her case and they felt that we had two options for her surgery:  1) We could travel to Cincinnati.  Dr. Michael Rutter at Cincinnati Children’s Hospital has more experience with Iris’ type of airway reconstruction than anyone else in the U.S.  So her heart repair and airway reconstruction would happen there.  Cincinnati Children’s is a wonderful hospital and she would be in very good hands …. Or, 2) Dr. Rutter offered to come to Doernbecher  … Dr. Rutter offered to come to Doernbecher!

I managed to ask questions regarding the benefits of each option … but honestly, one of my prayers had been answered.  We will be at home and Iris will have her surgery in a hospital that is familiar to us.  Dr. Langley will repair her heart and Dr. Rutter will perform her airway reconstruction.

The surgery hasn’t changed, but some of the outside stresses have been eliminated (travel, housing, etc).  I would’ve traveled anywhere to give my daughter the best possible care … as it turns out, thanks to the willingness of Dr. Rutter, that place is a tram ride away.

We don’t know the timing yet.  Dr. Rutter’s schedule will dictate that.  But for now, we’re thankful for this very good day!

Here’s a picture of Iris taken a few days ago in Dr. Armsby’s office, and another one after her bronchoscopy a few weeks ago.  Doernbecher represents a wide range of things to me … but to Iris, it is a place with games, fish, popsicles and really nice doctors.  As it should be.

IrisDoernbecher1 IrisDoernbecher2

Modern Medicine

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This week I visited with Dr. Stephen Langley, Doernbecher’s chief of pediatric cardiothoracic surgery.  He’s a guy that you pray you never need, but are grateful for if you ever do.  Dr. Langley showed me (and my wonderful sister who joined me for the appointment) the 3D CT images of Iris’ heart.  The images made our jaws drop.  Not because of her heart defect, but because the images were so detailed … they honestly didn’t look real.  Modern medicine is amazing!  I’ve seen images of pulmonary artery sling online and in medical books, but looking at my daughter’s heart while Dr. Langley described the repair was incredibly helpful.  I feel like I have a solid understanding of her heart condition and the necessary repair.

Her trachea is more complicated.  Here is a photo that shows her trachea coming down and then it branches into two bronchi.  The left bronchus (shown on the right) is significantly narrowed … and that’s an understatement.

Iristrachea

This is the tricky part.  There are only a handful of specialists experienced with this type of airway reconstruction.  But the team of doctors looking after Iris has great connections throughout the U.S. and beyond and I’m confident they will direct us to the surgeons that are the best fit for Iris.

Iris’ team includes Dr. Langley (who, interestingly, is involved with a non-profit that provides cardiac care to orphans in China .. Little Hearts Medical), Dr. Henry Milczuk (Iris’ otolaryngologist) and Dr. Laurie Armsby (Iris’ cardiologist .. she’s also involved with Little Hearts).  Words cannot describe how grateful I am to have such a remarkable team of doctors looking after my daughter.  They are reviewing her case again on Wednesday and hopefully I’ll have a better sense of direction at that time.

Thank you for your continued prayers and kind messages.  It means the world to us.

Our Journey

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When I was matched with my daughter, Iris, I received medical reports indicating she had a heart condition known as pulmonary artery sling.  In the few days that I had to review her limited medical information and make a decision, I spoke to multiple doctors at Doernbecher Children’s Hospital.  I feel blessed that they were knowledgeable of her condition and able to give me the necessary assurance to proceed with her adoption.  It was a serious, but repairable, condition.  Of course, as a mom, in the back of my mind I was hoping that some information got lost in translation … that when I finally brought her home, she’d be evaluated and I’d find out it wasn’t as serious as originally thought.

Unfortunately … her diagnosis was confirmed the week we arrived back in the U.S.  An ultrasound showed that she did, in fact, have pulmonary artery sling … a serious heart defect that can only be repaired via open-heart surgery.

My heart sank.

I knew, going in, that it was a possibility … but as I sat in the cardiologist’s office, with little Iris on my lap, reality set in.  And the tears flowed.

Days passed and I was able to wrap my arms around our situation and Iris’ path to health.  I found comfort in knowing that a brilliant surgeon at Doernbecher had experience with her condition and would be the one to operate on her.

In the meantime, Iris has been getting stronger each day, but physically she can’t do what other children her age can do.  She has labored breathing on a good day and when she exerts herself, it worsens to the point where she is too tired to keep up.  She stops herself.  It worries me ….

Our next step was to get a CT scan, and a bronchoscopy to determine if there is any damage to her trachea.  Those tests were performed a little over a week ago and the results were such that her doctors wanted to review her condition during their weekly conference in order to receive as much input on her case as possible.

That conference was yesterday.  Iris’ full diagnosis is: Pulmonary Artery Sling with Tracheal Stenosis.  Two serious conditions affecting her heart and airway .. each require major surgery.  While there is a surgeon at Doernbecher that can perform the operation for the pulmonary sling … there is not a surgeon with experience in this location of tracheal stenosis.  She will most likely undergo one surgery, repairing both conditions …. but her operation will occur at another hospital.  We don’t know where yet, but the search has already begun and Doernbecher will remain by our sides through this.  They are as determined as I am to find the best possible surgeons for Iris.

Yesterday the tears flowed again.  Overflowed.  But as Iris’ cardiologist, Dr. Laurie Armsby, so gently said to me; “This journey will be an emotional roller coaster and there will be some bad days.  Today is one of them.  But there will be good days too.”  I believe that.  Completely.