Well, for better or worse, the change was made on paper last night, and Dr Downey is our new surgeon for the moment. Also last night our bed was moved to a new location--coincidence? (my first thought was, we DID get a black mark!) no more window suite-- it was so shocking to walk into our bedspace and find a warmer bassinette there, and no Audrey!
 |
| The
view out Audrey's window-- we enjoyed this view for eight weeks before
being moved to another area! It helped me to deal with the
claustrophobia of being indoors all the time through the spring. |
Once we had stood by her bed for a few minutes getting oriented by the nurse, Dr Downey came up to meet me and he literally seemed to be walking on eggshells. The first thing he said to me was, "are you sure you want to do this? Dr Black is an excellent surgeon." I assured him that I have no issue with Dr Black, we had simply been impressed with the communication level he had had with the Grow family and wanted to meet him. We had also heard that he was moving down to UVRMC, the Provo Hospital, in September, which would be wonderful for follow up exams. We discussed a couple of my questions, and set up a time for next week to meet and talk for longer when Justin can attend. I was a little nervous about his apparent anxiousness to perform the surgery as soon as possible, and his description of the esophagram test--he uses a probe up inside the stomach, through the g-tube site, to press upward, as well as a probe down the throat to press downward. Poor baby! That helpless feeling caught me again, a terrible sense that seemingly little decisions we make now, will affect her for the rest of her life. Justin and I would both rather deal with feeding issues than the scary side effects of a tight repair.... we want to wait as long as needed to get a more relaxed repair, but we'll see what Dr Downey says at our conference Wednesday. He initially told me that his maximum wait is four months. He started listing the alternatives at that point, old terms I had hoped we'd left long behind.... colonic interposition (plugging the gap with a piece of colon, a lifesaving but problematic solution), gastric pull up (a deliberate hernia to bring the stomach up to connect to the fragment of esophagus, causing lifelong reflux and many worse problems), and a spit fistula (a hole in the neck to allow saliva to drain out instead of constantly being suctioned by a replogle tube while waiting for her to grow--yet another huge scar). Maybe he was trying to scare me into sticking with Dr Black. ;) Anyway, looking forward to Wednesday with some nerves and some hope.
Once we had stood by her bed for a few minutes getting oriented by the nurse, Dr Downey came up to meet me and he literally seemed to be walking on eggshells. The first thing he said to me was, "are you sure you want to do this? Dr Black is an excellent surgeon." I assured him that I have no issue with Dr Black, we had simply been impressed with the communication level he had had with the Grow family and wanted to meet him. We had also heard that he was moving down to UVRMC, the Provo Hospital, in September, which would be wonderful for follow up exams. We discussed a couple of my questions, and set up a time for next week to meet and talk for longer when Justin can attend. I was a little nervous about his apparent anxiousness to perform the surgery as soon as possible, and his description of the esophagram test--he uses a probe up inside the stomach, through the g-tube site, to press upward, as well as a probe down the throat to press downward. Poor baby! That helpless feeling caught me again, a terrible sense that seemingly little decisions we make now, will affect her for the rest of her life. Justin and I would both rather deal with feeding issues than the scary side effects of a tight repair.... we want to wait as long as needed to get a more relaxed repair, but we'll see what Dr Downey says at our conference Wednesday. He initially told me that his maximum wait is four months. He started listing the alternatives at that point, old terms I had hoped we'd left long behind.... colonic interposition (plugging the gap with a piece of colon, a lifesaving but problematic solution), gastric pull up (a deliberate hernia to bring the stomach up to connect to the fragment of esophagus, causing lifelong reflux and many worse problems), and a spit fistula (a hole in the neck to allow saliva to drain out instead of constantly being suctioned by a replogle tube while waiting for her to grow--yet another huge scar). Maybe he was trying to scare me into sticking with Dr Black. ;) Anyway, looking forward to Wednesday with some nerves and some hope.
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