Sad. Mad. Scared.

I haven't updated for a long time. I try to always stay focused on the positive, but that's been incredibly hard lately. Not having a reason for Little Man's increasing neurological difficulties is scary. He has days that he's very much "there" and then he has days where he can't talk straight, makes no sense and is just so out of it. That was bad enough.

Beans has a very complicated medical history including 4 months NPO when he was 3 due to aspiration. It's been a lifetime of struggles with food. From refusing to eat, to aspirating, to food allergies, dysphagia, and other issues. It has taken years and tons of work to get him to the point he's at - wanting to eat even though his diet was greatly limited by the dysphagia (difficulty swallowing) and food allergies.

In the last few weeks, his system has gone to new extremes. Within minutes of eating ANY food he breaks out in massive hives, his throat gets gurgly and he's admitted to pain/weird feelings in his throat and chest. These are not avoidable - he has reacted to things like watermelon, chicken, banana, a chocolate rice bar, even blue slushie from Sonic. His CMS nurse had us get Epipens to keep with him at all times. Epipens are injections of epinephrine to use if he goes into respiratory distress from an allergic reaction.

I've been trying to get ahold if his GI for a few days and finally heard back from him today. It's not good news. Beans is not allowed ANY food whatsoever. None. He may have water and his special elemental (amino acid) formula thru his g-tube. He sees the GI at the end of July and we'll discuss things more then. The reactions are too severe to risk feeding him.

NPO is bad enough before surgery. It is HELL for a 9 year old boy who has recently discovered a love of eating that most of us are born with. I know we have to do it for his safety. We live 45 minutes from the nearest hospital and if his throat swelled shut, even with the Epipens, it would be a really critical situation. I know all that.

But I also know that Beans loves to eat. I know how horrible NPO was when he had to do it before. I know how aware he is of being "normal." I know how much he missed out on this past year with his limited diet, and now I have to take away all of that. I will do it, I have to do it. But my heart is broken.