"We Will Not Feed Your Child."

Reagan was transported to Hopkins on Monday afternoon.  We came off the ambulance, and my mom was coming into the lobby just as we were getting there.  I will never forget the look of stress on her face.  The worry over Reagan is wearing on everyone.  If love could solve all of her problems, she'd be good as gold, because Lord knows that this child is loved beyond measure.

When we got here, we had to wait in the Pediatric ER, which we were told was procedural.  Reagan needed her dose of Erythromycin at 3:30, which we informed them at 2:00.  After repeated inquiries, the medicine arrived at 4.

We met a Junior Resident and provided her with all of Reagan's history.  Since being here, I have told the same story over and over and over.  While there is a team of specialists, I am not sure how much the team actually communicates with one another.  The lack of communication between the doctors themselves has been my greatest concern.

Dr. Thomas, whom we met during Reagan's GI appointment, is also on her care team for this hospital stay.  I honestly thought we would only be here for a day or two while they did the swallow study and assessed her, but that has not at all been the case.

Shortly after we arrived on Monday, we were told that Reagan needed to have an NG tube placed as soon as possible, because the doctors were not comfortable with her feeding on her own.  This was the most ridiculous thing I had heard-- Reagan eats just fine on her own.  We have had the pulmonary specialist and the ER docs at AAMC, PLUS the radiologist who did her upper GI ALL tell us that Reagan does not aspirate when she eats.  There is NO evidence of fluid in her lungs, nor has there ever been.  This poor little girl has already been through two chest X-Rays and one Upper GI fluoroscopy.. all of which have drawn the same conclusions.  She does not aspirate.  The formula completely bypasses her airway and 100% of it gets into her esophagus, where it is supposed to be.

At AAMC, a feeding tube was suggested, but Mike and I both had not consented to it.  Here at Hopkins, I expressed a similar view, that I did not consent to the feeding tube.  The next sentence I heard made my blood run cold:

"Well then your only other option is an IV with fluids, because we will not feed your child."

At this point, I felt completely backed into a corner.  Basically, I was being told that Reagan had to have a feeding tube or an IV; that eating by mouth was completely out of the picture.  Am I the ONLY one thinking logically here?!?  What evidence do we have that feeding her by mouth is dangerous??

Is she losing weight?  No.

Does she choke as she's eating?  No.

Any evidence of fluid in her lungs?  No.  Absolutely not.  So what is the problem?

Mike, my Mom, and I were completely confused at this point.  We were told that they would be back in a couple of hours to place the tube.  Mike and my Mom stepped outside for some air.  Just after they left, the doctors came in to place the tube.

I had to leave because I couldn't listen to Reagan scream anymore.

This little girl has been poked and prodded-- IV fluids, blood draws (several), vitals every four hours for every hospital stay.... she has endured so much, and it's not showing any signs of letting up.

I walked down the hall to the playroom.  Such a beautiful, happy place, the Hopkins playroom... it projects safety and serenity... two things I was not feeling.  

I could hear Reagan screaming all the way down the hall.  All I could think is that I am forced to let them do this to her.  I am being forced to let them... unnecessarily, in my opinion.

Fortunately, she calmed quickly.  The doctors determined that Reagan would receive a continuous feed of 27 mL/hour.  Do the math, and this rate only adds up to 648 mL per day.  Reagan eats about 800-850 mL per day.  It's not nearly enough.  Predictably, Reagan has been irritable tonight.  It's clear she is hungry.  I keep eyeing the formula sitting on the counter, that we brought.  I am very, very tempted to feed her a little bit extra.  She is capable of swallowing with the tube in.  My mom has talked me out of it so far.  I can't WAIT for the swallow study tomorrow.  Then we can prove that Reagan eats just fine and they'll take this damn thing out.

For now.. I'm going to try and get some sleep.  Our options are an extremely uncomfortable, unpredictable recliner (it likes to spring back when you least expect it and just as you're falling asleep).  The other is a pull-out couch, which actually isn't too bad.  Mom is in the recliner... I'm hoping tomorrow we'll get out of here and this will be our only night having to deal with it.

Mike wanted to stay too, but I told him to go home.  He needs to work as much as possible.

I know we're all stressed.... all our nerves are shot.  I'm hoping he can focus.

Breaks my heart.....