October 13th, 2006. Well, we were close to going home, until Beau spelled twice last night. Originally we were going to transfer him to a closer hospital so he could keep working on bottling. We were waiting for a bed to open sometime this week. Instead, a nurse asked us what the purpose of moving him was if he's so close to going home. This knocked me over. I had no idea he was close to going home. So I said, well okay we don't have to move him. She said that would be best since he's probably going to go home some time this weekend. They said all they needed was me to come in for a few days and stay all day and night to show I can feed him adequately. So while I'm at the hospital yesterday, the NP hits me with her concerns for Beau's reflux. Yes, I know he refluxes, but I also know it's getting better and he's not spelling because of it anymore. She thinks his spells are from reflux, I don't agree since all of his spells seem to be while he's feeding. Nine times out of ten it's because he's distracted by something else and doesn't pay attention to his bottling. All it takes is a loud laugh or someone walking by and he stops being coordinated and chokes. That's when he spells. In fact, he's been coughing and clearing his refluxed food over the last 2 weeks and not choking on it. Anyways, she's asked the GI team too come over and have a look at him and give her their recommendation. I'm floored by this because she's mentioning G-tubes and GI studies that stick a camera down my son's throat to look at his stomach. I'm paniced and I'm very upset since it's been mentioned in the doctor's note a full day before it's been mentioned to me. This is the third time I've had to remind the hospital that I need to be made aware of these things first! So the doctor comes over and spends two minutes with Beau before he makes his recommendations with his team. Before that one of his team was walking around talking to nurses that've had Beau asking their opinions on his feeding, with no regard to how long ago they've fed him. Then she's asking me my opinion and she doesn't give me a chance to finish at all! She kept cutting me off before I got to answer. So anyways, this doctor looks at Beau and taps on his belly and after a full two minutes tells us he recommends increasing his Prilosec, adding more thickener to his feeds, and sticking a feeding tube down into my son's upper intestine to stop his reflux from reaching his mouth. WHAT!!! Are you kidding me?!?!? He just got rid of his feeding tube and he's so much happier. So I finally have had enough and I talk to the NP about my feelings. I say I do not want anything stuck inside my son and I will not authorize it or a G-tube. He hadn't spelled in three days and I had high hopes he was growing out of this. Then she tells me they are only recommendations and for now she's only going to increase his Prilosec and give him a swallow study that follows the food past his mouth. She also says she's more concerned for the amount he needs to take to go home feeding from a bottle. That's fine with me. Personally, I think Beau needs to do things in his own time. He's never done well on someone else's schedule.

I booked the room yesterday and was all ready to spend the night. So it's about 8 pm and we've had a great day bottling. Now Beau's tired but he's hungry. So I give him the bottle and he downs the first 30 mL in no time. Half way through the next 30 he's chokes. I can't believe it. Three whole days, almost four, and he spells!!! Thankfully all it took was a few pats on the back and he's okay. So a few minutes later and he still wants to eat. He finishes the second 30 mL's without a problem. Then he's still hungry so I give him another 30 and a few pulls into it he chokes again!!! This time he needs more patting but still no nurses assistance. I'm livid. I'm crying and I feel like I can't handle this. Thankfully my husband came to pick me up and just let me cry. He's so great. He always makes me feel better. So now we're just hoping for days with no spells. 5 days and we can go home. 5 days. Please God please, 5 days. Let me get my little boy home and I know it'll be okay.