I had a fruitful conversation with Dr. S - he told me that they are doing much to push to get Sophia to Dr. Cotton and that Dr. Hamaker will be especially helpful due to her regular communication with him. He has spoken with her and Dr. Abraham today about Sophia. Dr. S. feels she is not "emergent" - but certainly urgent. She is able to be here at home and is not currently intubated at the hospital. He does think she should see Dr. Rutter and most likely some others there in Cincy. He told me they are the best and know more than he does. He stated he is happy to help - and has had the Peds Pulmonology staff continue to have phone contact today with Dr. Cotton's NP. I asked about the slit - whether it is rigid or fixed, or whether it was collapsing due to the bronchomalacia he had mentioned on Monday. He said it is not rigid - it is twisted and because it is soft, it is collapsing. He still feels the implant is going to be the best option. He didn't mention performing the tonsillectomy. I also asked him about her heart and what the CT-scan showed regarding its position. He said the scan in early June showed the heart in the correct place, that it was not rotating as it had when she was a baby.
I think that was most of it.
I also talked to Jenni, Dr. Hamaker's nurse practitioner, and she said Dr. Hamaker is out until Friday. But she remembered Sophia when Dr. S came on Monday to discuss her at their office. She was quite sympathetic to me and listened to me - encouraging me that indeed, Dr. Hamaker will be very beneficial in helping us to get Sophia in quickly to Dr. Cotton. She said that it will be important for Dr. Hamaker to assess Sophia in person on Monday, to give her more info to share with Dr. Cotton. Jenni told me that they realize Sophia is in a delicate condition - they want to help us and they understand our concern.
The nurse practitioner for Dr. Lisa Young - Director of Pediatric Rare Lung Diseases Program at Cincy, called while I was talking to Jenni, so although I couldn't talk to her in person today, we have left messages for each other. Dr. Young is the long-time pulmonologist for a family we know intimately. My friend told me to call Dr. Young's office and let her know that they have referred us to her. My friend's son is currently in Dental School with his tuition paid in full, due mostly to the letters of recommendation and assistance of Dr. Young. I thought it might help Sophia if she can see Dr. Young - but minimally, I would appreciate talking to her about Sophia if I'm able.
I did talk to Dr. Abraham's office, too. Sarah B is out this week, but providentially, her replacement used to work in the NICU and remembered taking care of Sophia - particularly because of the rare diagnosis of Lobar Emphysema. I explained Sophia's situation and that as a patient of Dr. Abraham's, we were hopeful he could also take steps on her behalf to see that she is seen quickly in Cincinnati, by contacting Dr. Cotton's office himself. Dr. Sufi told me later that after talking with Dr. Abraham again today, they both agree strongly that she should go to Cincy and that Sophia should benefit from as many as possible.
I did also leave 2 messages today with Dr. Cotton's nurses - both times the receptionist said that they would be calling me very soon. So I'll try again tomorrow morning -
I want them to see that I am concerned, but I don't want to annoy them so that they avoid talking to me - it seems a bit of a fine line.
I have found myself looking at Sophia more often than usual - not just to assess her breathing, etc., but just looking at her. At the beautiful way God has made her - and thinking how she has grown from a baby to such a sweet, little girl. Although she is reserved at church and with people she doesn't know well, in her home she is always singing, playing the piano, pretending to be a horse - or a ballerina, drawing almost constantly (especially pictures of mommy and daddy) - she is filled with life. It's good of God to give me something to remind me of the preciousness of our children, because I do take them for granted so often.
Thank you for praying for Sophia and for your encouragement - we don't just appreciate it, we need it.
2 sisters expecting - and lots of cousins- Sophia in the middle