Sunday, November 21, 2010


I was so sad to find out this morning that my music pastor's wife has passed away after her difficult battle with cancer. She was far too young. She will be greatly missed and was loved by so many people. I am praying for her family today.

Sam went back to the ER with Jason at about 2 am this morning. Yesterday morning we were excited when he seemed to be doing pretty well. I had planned to skip the soccer game but got a call towards the end that Sofie had a potty accident and so I headed down to the field. Sam seemed downright happy as we strolled out there so we ended up staying a few minutes and then joining the group for the end of year party breakfast. I was relaly hopeful that we had turned a corner on the breasthing but now in hindsight all the past mornings have been far easier than in the afternoons and over night. By 3 he just could not breathe well and even putting oxygen on when his color would look bad did not seem to ease it. Then after an afternoon feeding, he stopped tolerating his feeds. This is where the food backs up inthe syringe if we try feeding it bolus style or if we are pumping it in with the feeding pump where it is moving very slowly he begins writhing in discomfort. So we backed off on the food a bit but I began to fear he was getting worse so after much back and forth over whether to go or not, we opted to play it safe and go ahead down there in case they needed to deep suction or check blood gas levels. We are getting very little when we use the suction machine at home but he sounds so congested.

They did a chest X ray and saw that he was clear but hyperinflated and had alot of gas in his tummy which we knew because every time we vent him it loudly releases air right away which is not typical for him. They did not do much more for him but he had calmed alot while he was there so he came back home and then we started trying pedialyte. Over the last hour or so he has dipped back into some periods of stress again. SO it will be a long day.. hoping it gets better over the course of the next few days..but mainly praying to get him the food and energy he needs asap.

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