The Laryngo Files: The Story Changes

Here it is, Tuesday morning. Reagan cried all night. She was SO hungry. By now, I am beside myself. This is completely ridiculous. We did our best to rock her and calm her... to provide comfort. It wasn't quite enough... this little girl wants FOOD. Because she's being fed WAY LESS than she is used to. It's not rocket science. The Junior Resident came in to assess everything. We expressed our concerns, and she increased the feeding.

By ONE mL per hour.

So an extra 24 mLs... not even a full OUNCE in a 24-hour period.

This is getting more and more out of hand.

Hopkins is supposed to be the #1 hospital in the nation. I see the signs everywhere as I walk through the halls.

I do not feel that I am receiving such stellar treatment.

My little girl is HUNGRY.

Then the next bombshell.... now that Reagan has a feeding tube in, the urgency with which the team viewed the swallow study has slowed... and completely stalled. Now, they want us to hang out until Thursday at 1 to have our swallow study done as scheduled... from BEFORE she was even in the hospital, when I made that appointment three weeks ago.

No.

No, no no.

I demanded that the GI team come up to speak with us. The very first issue I brought up is that she is not receiving an adequate amount of food commensurate with what she was eating at home. They immediately determined that she should increase to 35 mL/hour. THANK YOU. However, they still will not remove the tube.

Throughout the conversation, there may or may not have been some (warranted, I feel) expletive-slinging on my part.

Since I have been here, not ONE person has proved to me that Reagan needs a feeding tube. She is still colicky. She is still gassy. She is exhibiting every symptom that she usually does with regard to her comfort/discomfort level. Nothing has changed. That's because the "issue" they were trying to bypass-- the esophagus-- is NOT the problem. Yes, she has reflux... we know this. However, their logic with regard to the tube was that if they eliminate the need for her to swallow, that it might solve the cyanotic episodes. However, these episodes are not related to her swallowing. They have nothing to do with it. She's STILL turning blue even with the tube in. So, they think it's a breathing issue.

Okay, so the child turns blue because she cannot breathe (according to them).

Let's introduce a feeding tube that completely inhibits her ability to breathe out of one side of her nose.

That makes complete sense in my head.

Right.

The speech pathologist that we met with previously also came up to see us. I explained everything (again) to her. She asked if we wanted her to try and get the swallow study earlier than Thursday at one.

YES.

YES, PLEASE.

It's tomorrow (Wednesday) at 10 AM.

Thank you. Now hopefully we can get out of here after that, because there are no issues with her swallowing. But they will see that for themselves tomorrow, I am sure.