Caring for Sophia

In the last month we have met allot of medical staff while visiting the RCNIC. We have learned very quickly that we are not the only ones caring for our little Sophia. While there is a visible division between the staff that are just taking care of her and the ones that are truly caring for her they are all very important cogs in the wheels of her getting better. You know the ones who truly are caring for her by the little statements that they say like" I thought about her all weekend" you can also tell when they get protective over her and truly get nervous when things change. As I have said in the past we have really come to appreciate her caregivers and you can tell that they want her to go home as soon as she can and also be successful when she leaves here. Although we should never pick a favorite I would say that Patrick and I have. When she cares for Sophia she looks at her lovingly and talks to her as if she is her own. She also explains things very clearly and really empowers us as parents to say something if we believe Sophia needs something. She knows Sophia as good as we do and seeks our opinions on decisions. She truly goes beyond just taking care of our little Sophia. While she is our top choice there are several others that also care for Sophia at the same high level and we are very grateful that they are taking care of her as well.

Today Sophia took a field trip to have her feeding tube moved back deeper into her intestine,(where it was before it moved a few days ago). While she was still doing well, she would get uncomfortable and her heart rate would go up and the drainage from the tube in her stomach started to get cloudy so the doctors felt it would be in her best interest to get it back where it was earlier in the week. Since she took the field trip before rounds and was doing good they were able to start weaning more medicines. Her sedation medicine got lowered, they discontinued her Pain medication, and the High Flow Oxygen was also lowered to 4LPM (liters per minute). They also felt that one of the two oxygen sensors was no longer needed, so the little red glowing thing you have seen in pictures on her hand is now gone too.