Okay. It seems that all of the ducks are in a row. My nerves are on edge but I will tell. Hayden is going inpatient tomorrow for an NG tube. They wanted him to go straight to G but we chose NG due to the holidays and travel. Other than the occasional overnights for observation or testing, Hayden has never been truly inpatient for days. Hell, Makaylah's trip a couple months ago was my first time there, too, with a child, not for myself. I am nervous about this trip. Hayden isn't. He's looking forward to it. I'm looking forward to growth. I'm nervous about handling pumps and bags and tubing and night feeds. I'm nervous about handling an Aspie with a broken schedule. I'm nervous about Jeremy being responsible for packing the whole family for Florida which he doesn't know yet.
Hayden's weight, hydration and eating has been a constant battle since they day he was born. We now know that his hypotonia extends into his mouth and throat muscles, he still has tongue thrust (a natural infant reflex to help prevent infants from choking on foreign objects; supposed to outgrow by about 4m), he has an uncoordinated swallow, he holds, and has an inefficient swallow and, apparently, high calorie needs although the cause is still unknown. On top of that, he also has sensory issues making some foods "not feel right" in his mouth which keeps him from eating them. Hayden is extremely slow to gain weight and grow, despite formulas, high fat/calorie foods, and much pushing and work. We've done appetite stimulants and feeding therapies that made no difference. None of this explains why he won't drink enough fluids to stay hydrated. He needs almost 40oz of free fluids and 1450cals a day. He avgs. 4oz of fluid and maybe 5-700cals on a normal day, sometimes much less. We are now moving on to plan B.
Hayden will be getting an NG tube first. This is a thin, silicon tube that will go in his nose down to his stomach. He will have this taped to his face. There's no surgery or cutting for this. He will get his formula put into a bag with tubing routed through a pump and connected to the one on his body. He will have a backpack to carry this around while milk is pumped directly into his body, giving him the nourishment he needs to grow. Hayden is okay with this so we are (getting to being) okay with this, too. I hope this works out for him. I'm sick of seeing bones. I don't like seeing his heart beating through his skin. I want to finally toss out all the 18m shorts and 2T diapers. I want him to have the energy to play with his friends. I want to get rid of the brown urine diapers. I want to see him start outgrowing things. I don't want to see him being the tiniest kid in the class. I want to hold his arm without feeling the bones. I hope this can stop the muscle atrophy that's going on. I want to see him be a normal child.
Praying all goes smoothly, and that this works for him and he is finally able to gain and grow :)
ReplyDelete