Tiny but Mighty Em

I'm hanging in there, just exhausted and getting the run around.  So no news really. The new pediatrician on call here- doesn’t want a feeding tube. He wants to fortify the formula more to 30 calories an oz. (It’s at 27 now).  He was a bit off, and seemed cool at first, but he didn’t really listen to my concerns. The dietician just came in, she wants the feeding tube bc he isn’t getting enough liquid. If we fortify to 30, formula gets too thick. He’s already constipated on the 27 bc his stools are hard rocks. So, she wants tube. She suggested, “Bc he loves his purées, he could eat those during the day, and some bottles like he is, then at night, finish the needed calories.” That way we know he’s getting everything he needs and doesn’t lose the feeding exercises.  GI doc came in and assessed, he thinks it is an issue where his stomach takes too long to empty so he is full really quickly. This will take some imaging and more tests, so we will be here longer. Basically, the ...

Minor update- GI doc highly recommended that Em come in for Fluids, monitoring, and a g-tube. So, his pediatrician and gi doc got him a bed at sunset, and here we stay.  There are TONS of Pediatricians in this hospital, and they are all working on his case together to figure out why he’s not eating, has a fever, and not gaining weight. I have to say: Kaiser is taking this way more seriously than UCLA- they believe in “mom gut feeling” On a side note, the genetics test came back needing more information. Turns out he has 3 copies of his chromosome 8- not sure what that means yet.. they won’t confirm! Robert and I have to do our genetics testing for more information. Another note, Has anyone seen that show the Genetic Detective? I’m all about it.  So, if you want to know more, keep checking for updates. 🤣 Pic of my exhausted and starving baby. 

Updates: it’s been a while (Wednesday) Today was pretty stressful. Em hasn’t been eating his normal 1k calories. (Yes that is high for a 9 month old adjusted baby; however, he is very underweight and everything he eats is fortified to improve calorie intake) Anyway, The calories have been cut down to 400. He spits out the purée pouches, and he sleeps All. The. Time. For example, he slept a full 13 hours last night, and took two four hour naps. Needless to say, mommy had that gut feeling.  We had the scheduled appointment follow up for Thursday. After contacting em’s old doc from UCLA bc he’s extremely easy to get a hold of, he suggested we bump the appointment to today. Anything that can jeopardize his heart needs an immediate action. Turns out, his old UCLA Doc used to work with his new Kaiser Doc, and they did some behind the scenes consulting. The end result, come in A day early! At the doc: We did the normal exams, and checked his scar. Everything looks great: except for t...