I'm so lost

[Anonymous]

Alexander had another choking stop breathing episode tonight. Saw the new gi dr today and really liked her. She gave us prilosec and then said she’d try zegered if that didn’t work. She knew about marci’s kids dosing and all. She’s concerned about his swallowing and wants a swallow test. Well after this latest episode she wanted him admitted to the hospital, 45 mins away and we’re expecting 30+ inches of snow tomorrow. I’d have to leave him there and I’d die. How can you leave your baby? The nicu was hard enough but this would be worse. Who would pick him up when he cries or hold him or rock him and soothe him. I couldn’t leave him. But if he isn’t swallowing right, which I don’t get, they’d have to put in a feeding tube. He’s gaining weight fine. I just think he needs to rice cereal, which wic refused to cover the special formula dr wrote script for so I gave him the regular one and that’s when he choked, over 1 hr later. This last bottle he had rice cereal added to it and I’m PRAYING he doesn’t spit up and choke. He’ll be terribly constipated but I can deal with that. Please say a prayer for my little boy. This isn’t fair!

[hellbennt]

your new doctor sounds great! a swallow study is necessary, but I hear you/understand about not wanting to leave your baby.
i would go ahead w/ the swallow study and since you can’t leave your baby, forget the hospital admittance. just get the swallow study done as soon as possible.
you are probably not wrong about the rice cereal- actually what you are right about is the THICKENING part of the rice cereal. the swallow study will tell you all how (the mechanics) your baby is swallowing AND will tell you, if it’s necessary, HOW to thicken but not with cereal but w/ a thickening agent – the names are called Simply Thick and Thick It and they come in the EXACT consistancy that the swallow study finds that your baby needs, with names like ‘honey’ or ‘nectar’ so that with this EXACT thickening you don’t need the cereal.
as for WIC and insurance, since your dr sounds so great, I bet his/her office has someone who is great w/ all of that too!
hang in there!

[Anonymous]

****Just wanted to let you know that if he is not swallowing right, that alone DOES NOT mean that he needs a feeding tube. Like Laura said, they will typically thicken with simply thick and they’ll do it to a consistency that he can tolerate.

I can’t remember what your son’s issue was- did he actually “stop breathing” i.e need resussitation, or have apnea, or did he just turn bluish and seem like he was choking? My daughter did this sometimes too. It was so scary. Once I called EMS, but she was better before they got to the house. It was when she would reflux a lot, and then the silent reflux would go back down the wrong way. She would also seem to choke and gag when feeding. The doctor told me that she may have an issue with a malformation of her esophagus and got me all freaked out. If that was the case, then she would need a feeding tube. We had the upper GI which showed that her anatomy was fine, and then the swallowing test that showed that she wasn’t aspirating. If it had showed that she was aspirating, then we would have done thickened fluids. So just to help you feel better, you shouldn’t need a feeding tube unless there’s a structural malformation! Sometimes I get so mad when the doctors say such things.

You may be at the hospital already, but I know how you feel. I also wouldn’t leave my child there alone. Hopefully you found someone to hold down things for you at home, so that you could stay with him. HUGS. Saying prayers for you. Keep us posted.

[Author]

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