Tuesday, October 4, 2011

Day 6 UCSF Trip 2

Apparently the real problem isn't that Liam's diaphragm is high on the right side. The realy problem come to find out is that the right side is loose and floppy. It's moving enough to make the lungs expand but not enough to be normal. They're just going to leave it the way it is unless he starts having respitory issues. Hopefully he won't start having those problems. Yesterday morning Liam started throwing up a yellow green. We thought maybe the NGtube was in the wrong spot causing it but the x-ray showed its where it's supposed to be. We decided to start the Reglan again and see if that helps. He's being monitored to see if the tremors start up again. We're all hoping they don't, but theres no better place for him to be while we try this. I'm so irritated with people telling me how to take care of my CDH baby or what to expect by those who haven't had experience with one. I've had to tell the nurses how to handle him and what to expect. I have to remind the nurses every night that he is not to be taken out of him room because they love to grab up babies and walk around the hallways with them to show them off. We've been so careful with him at home not letting anyone around that has even been exposed to anything that I'll be damned if I let him get sick at the hospital. The quality care of the 6th floor is just not there. They drop the ball on everything. If I hadn't been there not only would my kid not get his meds or his feedings on time, he'd cry until he passed out and sit in a dirty diaper all day. According to Dr Minioti, when Liam can gain weight for two days without losing then we can go home. Meanwhile we have yet to have the people with the pump come up to show us how to use it so we can take it home just in case or hear that everything has been arranged for home delivery on his NGtube supplies.

1 comment:

  1. I have been following your story and praying for Liam! I hope he is home again soon! I just wanted to say, and I am sure they checked for this, but throwing up bile can sometimes be a sign of a bowel obstruction. I have a CDH survivor too, and that has been drilled into my head to always have the doctors rule that out given the way our babies have had their insides rearranged. Anyways, I am sorry to intrude and like I said, I am sure they have already ruled it out, I know you are at a great hospital, but I felt like I had to say it just in case. Hugs!!!!!!!!!!!!!!!!!! Many prayers for good, stabile days, and home soon!!!!!!!!!!!!!!!
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor
    jennifertrafton@hotmail.com

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