Glenn and I want to keep you all as updated as possible about Sophia.
I emailed our old pulmonologist, Dr. B. on Monday afternoon to tell him about the bronchoscopy and seek his help. He took excellent care of Sophia until he moved to NJ 4 years ago. I have had just one correspondence with him since then, but after my email to him, Monday, he has been a huge help. He sent me his phone number and we talked yesterday. He encouraged me and Glenn to be as assertive as possible on Sophia's behalf, urging us to trust our instincts about her. He wants us to get her to Cincy to a couple of docs there immediately. He actually called back twice yesterday, to tell me what I need to take of Sophia's records, and to give me immeasurable help and encouragement about how to get her there quickly. Because he isn't privy to her scope, he has to go on what info I can give him - so there are questions he has that I don't have answers to.
I also talked with our pulmo's office several times, first to ask their help in getting Sophia quickly to the specialists. They were able to contact the main dr's office., Dr. Cotton, and faxed her medical records, scope pictures, and other important info to his nurses, who are supposed to call me. Although, per Dr. B's urging, I am going to call them persistently to speed up the time they might otherwise take to get to me. Hopefully, today, I will be able to talk to someone who I can impress the urgency of Sophia's condition to sufficiently that they will be an advocate to Dr. Cotton for her.
Glenn was able to pick up 4 cd's with all her chest x-rays and ct-scans since birth - which Dr. B told me to take when we go. (I mentioned that to you all before)
Dr. S also called and although he is open to us getting the 2nd opinion (his idea originally on Monday), he did not offer to do anything to help us get her to Cincy, and restated his opinion that she should have the tonsillectomy first. I am planning to call him back today to plead with him to help us get her to Cincy, using his position as her physician. Hopefully, God will give me the right words to say that will help encourage him to be more active in helping us.
I also have a friend, Terry, who has a strong connection with the doctor who is the Director of Peds Pulmonology at Cincy, so I am going to try to make inroads with her today, using Terry's name as a reference. This doctor works with the other specialist - who is a pulmonologist - that Dr. B - and Jason E have told us to see. He has done pioneer work in airway reconstruction which is so new, it isn't published yet. His name is Dr. Rutter.
In addition - I am going to call the assistant to the cardio thoracic surgeon who did Sophia's implant. I have been on friendly basis with her since Sophia's hospitalization when she was given the implant - mostly due to the fact that we both have twins - hers are 6 months younger than the girls. I am going to ask if she or Dr. Abraham can also talk to the Cincy people and persuade them to see Sophia right away.
Also - Sophia has a 10:30 appt Monday with the ENT who would do the tonsillectomy. This ENT has regular communication with Dr. Cotton -and could very well be a big help to us. Dr. B has suggested to me that Sophia shouldn't have any procedures done - including the tonsillectomy until she is able to be comprehensively examined by the specialists. He said since she isn't having any issues related to the tonsils - no loud snoring or sleep issues - to take them out could prove more harmful than helpful at this point. He said that there are so many complications that could arise from the tonsillectomy that we would certainly lose precious time getting the very serious issue of the slitted opening to her lung and whatever structural complications are present there that are unknown right now.
So please pray that the Lord would be gracious to us - and that He would cause the right connections to be made, and the hearts of the right doctors to be moved in Sophia's favor. That they would be able to see her immediately.