Oh what a morning. Some days I think I should buy stock in AT$T with as much as Im on the phone for Bennie. He is going back on another antibiotic. Way to much gagging and choking. Worried another sinus infection and I dont want aspiration and pneumonia. He has come too far. ENT and pulmonary are trying to figure out who does his biopsy. ENT says pulm but pulm says u can only get a decent biopsy through sedation and ENT. Working on something to protect his little hand. He always chews on his finger and thumb and the skin is so wet and broken down. Cant put gloves or Vaseline on him. Trying to find which doc in which department to help me start a referral to insurance for a disabled car seat with much more support for him. They start at fifteen hundred. Very very hard to get approved but worth a shot. Trying to get a strong enough vitamin d multi vitamin. Having to do it in two separate meds but should hopefully be able to do it through prescription to reduce cost every month. Immuno says vitamin d can help immune compromised chronic respiratory kiddos. Fingers crossed on that one. And trying to coordinate upper GI with KUB. And swallow study. Has to be down in house with insurance but sent to AFCH to be read. And we have the ok to switch from miralax to milk of magnesia long term as it seems to cut down on gas and cramping. Reducing his pain even a fraction is huge. Cant stand to see him in so much pain. His first ever school pics are Thursday hoping he feels better. I want him to try and have as regular a life as the other kids as possible if that makes sense. All the other kids get school pics why not him? Praying for quick healing, meds to work out, approval for car seat, skin healing, and biopsy to happen. Thanks and God bless and best wishes one and all. Ps welcome all our new friends.
Posted on: Mon, 29 Sep 2014 17:25:57 +0000
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