How about we start out the day with a little good news, eh? They have finally managed to get Dax's pain under control and they took out his oxygen tube. He rested well for the most part last night... we only had to get up twice to comfort him. Unfortunately, Bert and I didn't rest nearly quite as well. This isn't exactly the Ritz-Carlton. :) They drew his labs at 4am without much fuss and he was babbling happily when his nurse, Dani, took him down for stomach and chest x-rays at 6am. His labs and x-rays came back normal and we just came back from the swallow test. We think we may have finally found the answer to his disinterest in eating. Turns out he is aspirating slightly with formula. He did much better with a thicker formula and even got to taste some banana baby food which he absolutely loved! I will be making him some baby food very soon. :) The speech therapist is going to show us how to properly thicken his formula with rice cereal, but for now he is still on a feeding tube. I asked the pediatrician about that several times in the past and she always said it would require too much energy for him to eat, even with a modified nipple. I should have just gone with my instinct and tried it anyway. Let's hope this will be the ticket to more enjoyable and shorter (and maybe fewer) meals from here on out. He'll come back to Egleston in 4-6 weeks as an outpatient to retest. They are now giving him Lasix by mouth which means morphine is the only drug he is getting via IV and he hasn't had that since 4:30am and seems to be doing okay. They will be removing his JP drain and pace wires later today and will perform an echo this afternoon. They say we should should expect to go home tomorrow. Bert and I are about to take a discharge class. We will provide another update this evening.
Yesterday was extremely trying. Thank you all for your kind words. They really help keep us going. Keep your fingers crossed he eats well by bottle today and can go home tomorrow without a tube! :)
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