Sunday, August 22, 2010

Steps to Healing

We just got home from church and it was a truly great sermon..really made me think about the path of healing we are on with Sam. Not just the physical healing that he has had to do from his surgeries and all the growth but our own processing of all that happened from end of pregnancy to now.. a journey of healing for all of us for sure. Our pastor spoke about victims vs victors through Christ and I really feel we are victors in all of this..

We have gained alot and overcome some big hurdles but mainly we have stretched ourselves and found new inner strength, cemented some of our priorities and values..all because our world was rocked by events we could not control. All of us at some point or other have to go through stuff to appreciate God's gifts I guess. Our stages of emotion were not unlike the ones you go through when someone you love dies. There were angry times and times when we could not get past the "why" question and then the "what" questions of needing to know what lies ahead. We are having to let go of the natural process of needing to control everything. On low days I still want to just fix it or go back and change things or even decisions made by others... but we have to look forward and just focus on moving ahead in the way that pleases God best and helps Sam best.

Sam had a Brady Friday evening late when we went to put him down to bed. He did not get rigored or bulging eyes, arms tight and postured in etc this time. Jason was holding him and I just saw Sam's color change across his face to blue and then the alarm was going off and heart rate was down in 60s. He improved color pretty quick but heart rate stayed down lower than usual in 70s to low 100s for a little bit even after giving him caffeine. Made me nervous to go to bed but we were just so tired.

We have a cardiology appt this next wednesday morning in Pensacola and this is our first cardio followup since leaving Shands. I want to find out if his PDA/ PFOs with left to right shunting are no longer there and if I can truly drop cardio out of his diagnostic picture. I also want to make sure the circulatory issues we keep noticing are of any real concern. Sometimes we still see his hands and feet looking rather odd and either ruddish real red and when you pinch his foot it takes a while for color to return to the spot or the hands and feet look really white or paled out. He is not particularly warm or cold at the time and both extremes seem to follow each other over a short period but are not associated with Bradys as far as we can tell although friday evening I did remember noting it again to Jason earlier in the evening. The nurse who sees Sam for developmental therapy says it might be worthwhile to have a pulse ox available during those periods to moniter his oxygen saturation levels.  The docs at Shands said it was probably best to avoid using one of those since they give off a lot of false alarms and are hard to keep in position on a busy baby. I would think we could just use it more when it looked like there were signs of distress or color change. Anyway.. Sam was napping and is beginning to wake..       

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