It's amazing what your body gets used too. We got used to not sleeping at night, if Bradley wasn't up one of the girls were, or that dastardly pump was letting us hear something. It got so bad that the idea of a coffee IV was something I had begun to consider asking my doctor about. Well, not really...but I sure was putting it away - I can feel my Cardiologist cringing and shaking his head as we speak. We've recently switched away from the night time drips to Bolus feeds with Bradley. What does that mean? I'm glad you asked. Rather than keep Bradley hooked up all night, we are giving him feeds by: syringe, gravity, or bigger amounts over a shorter amount of time by the pump. First result, he sleeps better at night! Hallelujah, enough said! Well.....hold that thought and keep coming back to it - we're going to need it.
It's all about tolerance and titration. With his Feeding therapist, Bradley was quite the show-off, took in four ounces plus some by mouth and proceeded to dump it all later in a most painful fashion. He did however, sleep through the night. Then I backed off to just four ounces...still dumping...back to three ounces...still dumps it....grrr.... Fine, three ounces with his pump for an hour...I got nothing better to do than watch "The Wiggles" and keep him contained on my lap. By syringe I can do 2 ounces at a time - gravity: shmavity! This is an open syringe that let's the Pediasure flow into his extension and button based on how high or low I hold it up - so slow or fast, but it sure doesn't take all that long. I guess we'll go back to that when he can handle the slow syringe. The Dietitian told me he has to drink two and a half cans of Pediasure a day plus his regular amount of food. Got it! Watching intake like a hawk! If he doesn't get two and a half cans he needs the remainder in his through his tube...got it! Carefully trying to decide - will he finish that cup of milk or will he need a tube feeding? Extension on just in case - ah, tonight he finished it....try to take of the extension - oh look very awake! For hours.... Tonight, leave it on...oh look...bleeding from the button site because it pulled.... Just shoot me! But he's sleeping through the night! Yes! No...sort of, but mom not so much.
Deeper sleep, better sleep....more dreaming, more imagination - such joy, such wonder, so many night terrors! Really? Yep. Crying out in his sleep...crying in his sleep...fighting me in his sleep because he was crying like he was awake but when I laid him on the changing table to vent him...World War III breaks out cause he's still asleep! Who is this kid and how can I make this any better? Therapies during the day? Hah...that's a joke! Bradley was so frustrated, so overwhelmed by his own brain trying to catch up with itself...by all these new therapists coming in that he shut down. Didn't matter if you were his favorite...he checked out when they were here. So we went back to the old fashioned way, where Mom taught him his colors and the signs to go with. And we ditched two therapists, because the results weren't worth it, and though I am nervous about it...we are going to try two new therapists soon. One is supposed to be fluent in sign. My response was, great - cause Mom doesn't know all the color signs and his was, we'll teach him Verbs... Uh, yeah - we could do that too. Great, he'll be able to teach Bradley to say "I am really angry at Mom!" Which is better than the implied message he gives when he is trying to yank my hair out by the root. Ah communication! ;-) Such joy!
Worse, suddenly he only wants pudding...hmmm? Can he give up his Pediasure and eat pudding three or four times a day and actually survive...let alone thrive? Yeah, I didn't think so either. So I had him checked, sore throat on Friday but clear and happy on Monday. Still....no chewing. Luckily, his feeding therapist; who I believe will be sainted before her life is over, gave me the name of a great dentist. Turns out Bradley is trying to get his first molars in on the top, in the very back. The gums are angry and the teeth are just pushing through and may take months to push through because the only thing fast about Bradley's teeth are how quickly he can turn them on you if he can't get your hair. Though this biting thing is happening less and less, my mentioning it here is like requesting it for later today...so well...look out and don't say I didn't warn you.
Bradley was pushing close to 31 pounds when we went to the Peds GI Doc in March...somehow in the last month we've managed to lose a pound and a half. What the Dietitian doesn't know is that he actually was weighing in at 28.8 pounds after our phone call. Worried mom weighed him and the 29.4 I thought he was at had dipped overnight. How does that happen? We're back to two week weight checks to see if he can stay off the night pump at all. So now our day has to include at least two bolus feeds at least one with the machine, an hour each of three ounces, just to make sure that he gets all he needs to get to gain some weight back. He has to get his calories. They can't all come from pudding...well, no you're right...they can't all come from pudding. I am reverting back to his puree days where he would mow through sweet potatoes and cranberry sauce...things like that that are so soft his top back molars don't have to connect with lower back molars - soups, but concentrated because otherwise they are too thin and he can't hold them in his mouth. And since we can't afford any illness right now, he didn't go to watch the girls play Volleyball last night and if the wind doesn't die down - he won't get to go on Saturday either. I feel like he's back in his bubble.
But here's the irony. He can't handle a gravity feed of three ounces but in the middle of the night last night he took almost five ounces by mouth from his straw cup. Hmmm.... It doesn't matter that he and I slept through the night before last right now I feel like he has been up every night for a week. That's how out of practice I am becoming. It could be I'm getting old and just need my sleep too. Either way, I'm hoping he sleeps through tonight so I have a chance to catch up again. The alternative is returning to the nights of not sleeping every night, not sure that I am a fan of that idea at all! :-)
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