Another trip to the ER...

So, on Friday, we go to Harlie's follow-up appointment with her pediatrician. She is now on O2 continuously. When we put her on the scale to weigh her, we have to remove the mask (just for a second). Her color immediately changes. He sees her, doesn't like her color at all (even though her sats are in the 80s). He calls her cardiologist, they say come to the ER.

The plan is to admit her, tweak her meds, see what happens. So, off we go, back to the ER. Bummer.We get there and check in. There is a girl there who looks in the stroller. She says, "oh, she's got a trach?" That's interesting. No one ever says that. We said yes. She tells us that she had one when she was a baby - of course we both look at her neck and notice some scarring - but not from the stoma (hole). She said she was born without an esophagus. Wow. Then she said, "but I'm here!". How great is that?

Well, they take x-rays. Now she has pulmonary edema, which is fluid IN her lungs (whereas the chylothorax was fluid AROUND her lungs). Personally, I'm thrilled. That's understandable, really and an easy fix. A little over a week ago we stopped her diuretics (which helps your body get rid of extra fluid). They were concerned that she was getting dehydrated (because of the C-Diff), which would be very bad for her blood pressure, since her blood flow is passive.

Then, on Wednesday, when we went to the ER, since they were thinking dehydration, they gave her fluids through her IV. The fluids proved too much for her and now we have to put her back on the diuretics. A constant balancing act.

They wanted to give her the meds through an IV, since that works better. But, no such luck. Her veins are spent. They wanted to admit her and watch her for 24-48 hours after starting the meds again. But, I pleaded my case - saying that there is nothing that they will do at the hospital that I can't do at home. I will be able to watch for all the same things and will monitor her respirations, temperature, O2 requirement, etc. So... they let us take her home! YAY!

So, at midnight we get home with a very sleepy baby. I put her in the crib and next thing I know she is dancing! Both her arms are just flapping away, both legs are going crazy and she is smiling and her eyes are bright as day. You can not tell me that she isn't fully aware of what is going on! She was so happy to be home!

Then, she slept through the night just fine. I've given her 2 doses of her meds, and I haven't really noticed an improvement yet. Hopefully, we will soon. I am just so thankful that we aren't at the hospital!

Well, that's it for today. I hope you are all well. Talk to you later!

Take care,
Christy