Bert and I took a discharge class this morning and then went out to lunch. They pulled his JP drain and pacer wires while we were gone and Grandma got to change his first blowout in quite some time… thank you Dax for doing that while we were away.
They came and did an echo this afternoon which Dr. Fyfe (one of the cardiologists) said looked great. He said Dr. Kanter did a really good job and reiterated how awesome it is that Dax got to keep his pulmonary valve. He said the change in gradient pressure on either side of his valve is negligible. That either you or I might have the same such difference.
The speech therapist, Kristin, showed us how to thicken Dax's formula with both rice cereal and a product called "Simply Thick" this afternoon. Dax ate 70mL of rice thickened formula within 20 mins at 3pm. We thought we might have finally found the answer. To see which he preferred, we tried the "Simply Thick" at the 6pm feeding and he only took 40mL. We mixed another 30mL of the rice cereal thickened kind and he only took 5mL. We noticed he started sticking out his tongue often in a gagging reflex after we began thickening his formula and notified his nurse. We switched back to the rice thickened formula only at 9pm and he only took 30mL and proceeded to vomit up the remained which was tube fed to him just shortly after we got a crash course on how to drop a feeding tube. We haven't actually attempt one ourselves on Dax, and I'm not sure I can do it personally. I remember how bad Dax screamed bloody murder in the NICU and I cried and cried. We are extremely frustrated to end such a great day on a sour note. I'm sick of crying. I just want to solve this mystery and we need to find the right person to do it. We were fully prepared for his feedings not to necessarily improve after surgery, but never thought they would end up worse. We think it is related to his acid reflux or perhaps a combination of many factors… he is very hungry, trying to eat his hands even, but something just keeps him from being able to eat. We were scheduled to go home tomorrow, but that may change now if Dax can't even eat via feeding tube. Hopefully going back to thinner formula over the course of this evening will help.
I'll end on a positive note… Dax's two sweet babysitters, Lynn and Amanda, stopped by for a visit this afternoon and brought cute gifts. One makes a loud noise, but we'll pay them back for that when they come to babysit later! ;) Thank you girls… we really appreciate it. Keep your fingers crossed that Dax will keep down his tube feedings tonight and we can bring you good news in the morning.
Love to everyone,
Bert, Jade, and Dax
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