Yesterday was another swallow study. It's a very interesting process. Baby GL is in a chair that looks similar to an infant bicycle seat for the back of a bike. We put on our leaded vests to protect us from the x-ray machine that's filming Baby GL's swallows in real time. The machine is put up to Baby GL and we can see his whole jaw line down into his throat. We saw some teeth in his mouth, even though they haven't broken through just yet. We know they're coming. A bottle is then prepared just like at home except with the addition of a dye that can be seen in the camera. We were positive that the study would show Baby GL as a perfect eater, no more aspirating, and a great suck/swallow pattern. Well, he does have a great suck/swallow pattern when he gets in the groove, however, he is still aspirating, and it's silent. When a child is silent aspirating it means they are not coughing which would help release what ever went into the airway. We thought for sure this wouldn't be the case because at home he coughs often, especially when he's hurrying through his feeding. Silently aspirating is not something that can be detected without the camera. It's a scary thing to think about because we would never be able to tell at home if that was happening if he didn't cough. The aspirating just keeps him at higher risk for pneumonia.
After trying the bottle we made an attempt with some spoon feeding. He did really well. We could see on the camera that he took some good swallows. He gagged a little, but more from the unfamiliarity of having a spoon in his mouth.
The result of the study was basically not changing much of what we've been doing. We are to let Baby GL still take a bottle, after 15-20 minutes we should stop, which is usually when he naturally tires out. The remainder of food is to be taken through his g-tube. The one thing she told us was to get through the whole feeding in about 30-45 minutes. It's not an easy task. If Baby GL is awake when we feed him through the g-tube he usually ends up vomiting. He wants to jump and wiggle around every moment he is awake which just shakes up his tummy. We always work towards him falling asleep while he takes his bottle because then we can tube feed him with ease.
We await the day when we can finally be done with all the tubes. I think the oxygen tubing will be gone before the g-tube. Currently, Baby GL takes his oxygen off on his own. It spends most of the day in his mouth or on his forehead rather than in his nose.
We are making strides in his tummy time. He still isn't a big fan of lying on the floor. He works on pushing up and kicking his feet, but after a few minutes he gets frustrated. His favorite position is standing in my lap. I relax on the couch while he jumps away. I think he tests himself because he'll grab onto my shirt and start leaning back. I'm not clear if he's leaning back on his own or if it's his loss of control. I think sometimes it's both.
We've fully weened off all the sedatives. It was a struggle over the weekend. He had moments where he would tremble in his arms and get very agitated. It took a lot of rocking and bad singing to get him to take a nap. Once he did he would usually wake up showing lessening signs of withdrawal. It's crazy to think that our son, only 10 months is having drug withdrawals.
This week Baby GL will be 11 months old, almost 8 months adjusted. Soon he'll have his first birthday, then it will be summer, maybe he'll be walking? I think we'll settle for crawling.
After trying the bottle we made an attempt with some spoon feeding. He did really well. We could see on the camera that he took some good swallows. He gagged a little, but more from the unfamiliarity of having a spoon in his mouth.
The result of the study was basically not changing much of what we've been doing. We are to let Baby GL still take a bottle, after 15-20 minutes we should stop, which is usually when he naturally tires out. The remainder of food is to be taken through his g-tube. The one thing she told us was to get through the whole feeding in about 30-45 minutes. It's not an easy task. If Baby GL is awake when we feed him through the g-tube he usually ends up vomiting. He wants to jump and wiggle around every moment he is awake which just shakes up his tummy. We always work towards him falling asleep while he takes his bottle because then we can tube feed him with ease.
We await the day when we can finally be done with all the tubes. I think the oxygen tubing will be gone before the g-tube. Currently, Baby GL takes his oxygen off on his own. It spends most of the day in his mouth or on his forehead rather than in his nose.
We are making strides in his tummy time. He still isn't a big fan of lying on the floor. He works on pushing up and kicking his feet, but after a few minutes he gets frustrated. His favorite position is standing in my lap. I relax on the couch while he jumps away. I think he tests himself because he'll grab onto my shirt and start leaning back. I'm not clear if he's leaning back on his own or if it's his loss of control. I think sometimes it's both.
We've fully weened off all the sedatives. It was a struggle over the weekend. He had moments where he would tremble in his arms and get very agitated. It took a lot of rocking and bad singing to get him to take a nap. Once he did he would usually wake up showing lessening signs of withdrawal. It's crazy to think that our son, only 10 months is having drug withdrawals.
This week Baby GL will be 11 months old, almost 8 months adjusted. Soon he'll have his first birthday, then it will be summer, maybe he'll be walking? I think we'll settle for crawling.
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