Really...already! Our fun was just getting started! Alex has been feeling really good and we have been taking advantage of our time without his port accessed. Alex has been asking for baths several times a day. We have been to the pool multiple times. Just trying to make the most of it. Yesterday we did our weekly labs. It was apparent right away that the doctors were not going to be thrilled. His potassium and chloride were both significantly low along with other signs of dehydration. Anyone who has followed our blog for a while knows this is always our rock and hard place. Alex simply cannot tolerate feeds at a rate high enough to get in enough fluids. So we wound up giving 2 large fluid boluses through his port last night. We are rechecking labs today and then a decision will be made regarding where we go from here. I am disappointed in that we have only had 10 days without using his line. My hope was for a full summer. But, I know that what matters is keeping Alex healthy. We will make the summer fun whether we need to use his port or not!
On the bright side, his continuous glucose monitor was approved. We should be able to get training next week and start using that. I am so grateful that insurance approved it. It will take a big worry off me, especially overnight to know that something will alert us if his glucose becomes dangerously low!
Ali
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