Carson had a rough weekend. We were told on Sunday that he was having his bouts with his oxygen level in his blood dropping again. The doctors fear that he has an infection; again. They ran more tests and saw that his red blood cell count was low so they think that may have had something to do with his oxygen level. They put him on another round of antibiotics and will treat him for 7 days this time to make sure that if there is an infection that they get it taken care of. He's still on the ventilator and it's been helping him take deeper breaths. They've not been cycling him with the trach mask since he's been having so much trouble with oxygenation. We’ve read a lot about Apert Syndrome and know that a lot of these children have problems with Apnea so we think that it may not be an infection (granted we aren’t doctors).
So thankfully Heather was at the hospital today when they were doing rounds and she was able to speak with the neonatalogist. He was very interested that we were working with Dr. Fearon and asked for his contact info so he could call him to discuss Carson’s situation. We are so relieved, and I mean SO relieved that they offered to do this. The neonatalogist sounds very willing to get input from Dr. Fearon and learn more about Apert Syndrome. This has always been our concern since he was born; that though our hospital is excellent, that they haven’t had an Apert baby in a long time. So I think we’ll sleep a little better from here on out.
During rounds they also talked about doing a scope of Carson’s esophagus and stomach to get an idea of what will be required for the G-tube. They will do the scope sometime this week and then schedule the surgery for the G-tube.
Please being praying for Heather and me as the weight of this situation is bearing heavy on us. We fully trust what God is doing. We are just exhausted from going non-stop all of the time. We are also having a hard time watching everything in our lives change; there’s a lot of adjusting that’s happening all at once. Please also pray for Carson that we can bring him home soon and begin to establish our new normal.