Monday, August 30, 2010

July 31

Hello dear Family and Friends,

I'll try to give you as many details as possible, but not make it too lengthy.

Yesterday (Friday) morning, I called Dr. Cotton's office and spoke to his nurse, Crystal, again.  She told me she would be presenting Sophia's case next Wednesday to an entire team of interrelated specialists at the Cincy hospital - pulmonologists, airway specialists, ENT's, nurse practitioners, GI, cardio-thoracic, to name a few.  She said they all meet once a week - Wednesday - to discuss new and current cases -  something called an Aerodigestive Team.  Then a week later, would make recommendations about each case and start a general comprehensive testing.  We would begin a 3 day period of introduction by first meeting the team members who would be working with her.  She told me about the various tests they would do on Sophia - gastric reflux testing, Ct- scan, esophagus study - as well as her trachea, speech pathologist, swallow study - where they would use an endotracheal tube in her nose, otolaryngology, bronchial washes, and more that I didn't write down.  All on an outpatient basis, but requiring us to be in Cincy for 3 days consecutively.  She said that if she couldn't call me next Wednesday, for me to call her Thursday.  It looks as if doing all of that could take a few more weeks, and then Dr. Cotton would scope her - another bronchoscopy like what our Dr. Sufi did this past Monday.  

Our former pulmonologist - who I have told you about - Dr. B, has called me every day from his cell phone to offer suggestions and encouragement.  He has been invaluable - and inspiring.  He told me that he has been thinking of Sophia daily and all throughout the day.  He reminded me that as her parents - we are her strongest and best advocates.  That we have power regarding her care.  Need I say how much we miss having this doctor for Sophia's pulmonologist?  As he was talking to me yesterday, Dr. Cotton's nurse Crystal beeped in.  She told me that Dr. Cotton was to be in the office at noon for a brief time, she wasn't sure she could talk to him, but she would try.

I then talked to Dr. Young's nurse practitioner, who told me she had sent an urgent email to their entire staff of pulmonologists and airway specialists at 9:20 Friday morning.  She had spoken with one of their pulmonologists and he knew Crystal had Sophia's info.  They decided that at this time - having Crystal take the lead in Sophia's case would be best for Sophia - and they would follow along and work with the rest of the Aerodigestive team.  She told me to call her if I needed anything. 

At 2:30 I was in the car with the kids when Crystal called on my cell phone.  She told me that she had in fact been able to speak with Dr. Cotton for a few minutes at noon.  Then shortly thereafter, he called her into his office to ask her for more information about Sophia.  Per their discussion, the course of action has changed significantly for Sophia.  Dr. Cotton and one of his partners are going to do a bronchoscopy on Sophia next Friday. We will go on Thursday to meet them, as well as their cardio-thoracic surgeon, and have an angiogram performed on Sophia - they want to make sure there is nothing that with her heart that might complicate the scope on Friday.  They are also checking her for reflux, to make sure that they don't have any problems that way while the scope is in her airway.  In essence, Crystal told me that they are switching the usual order of procedure for new patients in Sophia's case.  The comprehensive testing will be done after the scope, because Crystal told Dr. Cotton she feels Sophia has an "unsafe airway" and should be seen immediately.  She told me that they would rather know how severely Sophia's airway is compromised, and then backtrack and do the comprehensive testing, then wait any longer than necessary while Sophia's airway could me further twisted.  She said they do have inpatients on trachs who have serious illnesses, but their airways are safe, Sophia's isn't.  

A very dear friend, Ronda W., has a brother who lives in Cincy and she has contacted him - with the result that he has offered for Glenn and Sophia and me to stay at his house while we are there.

At this point, we are waiting for the scheduler from Dr. Cotton's office to call (most likely Monday) to give us details about time, etc. for next week.  Crystal told me that she had had Sophia's chart all day up to that point and hadn't had a chance to give it to their insurance rep, but she was not expecting issues with precertification for Sophia.  Thank goodness the whole health bill fiasco hasn't messed everything up yet!

So you see, how God has directed everything to His pleasure- through your prayers on Sophia's behalf.  We can't thank you enough.  Please continue to be in prayer - and to ask others to pray for her as well.  We are watching her closely - and I have begun to see some mild retracting in her abdomen the last 2 days - evidence of how hard her body is working to get air.  Her sats are still normal - her heart rate is slightly elevated.  When she talks, she takes a deep, audible breath, then says something very quickly and breathlessly, then pauses and repeats the process.  Her little clavicles come into relief when she is exerting energy - after going up and down the stairs, for instance.  But she is happy - she is singing in her high, breathless voice, continually.  And she has been really producing lots of drawings - of princesses, and mommy and daddy, and frogs.

We are so thankful for all of you - for your prayers, and also for your words and email of encouragement.  Dr. B said to me today that I sounded strong - I don't feel it.  But I know that God has sustained us this week (can it really have only been 5 days so far?)  - we feel supported and encouraged - and hopeful.  We know the Spirit's leading has blessed us - and we know that your prayers have been instrumental.  

Please call or email with any questions.

Kelly for the Orrs


  1. you and sophia and your whole family are in my prayers the same as I know we are in yours.

  2. We pray for you every day, Heather.