What Not To Say

Today was the long-awaited GI (gastrointestinal) appointment for Ladybug. Without going into graphic details there hasn’t been a stinky tushy to change in 5 days, and she has started to spit up again. With the CDG, her “short gut” from the bowel resection, and the past GI bleed,  it’s so hard not to think that it’s something more than a case of constipation.

Upon our arrival at the GI clinic ladybug was weighed, measured, meds were increased to correspond with her recent weight gain, and her little round buggy belly was pushed and poked.

I knew that she may have poor bowel sounds (the lack of a hollow drum when you tap you finger on her tummy), but really didn’t expect to hear that there was something amiss with her liver.

Here is an appropriate thing to tell a mum after you find something in an examination: “her liver feels a bit large and hard. It’s difficult to tell for sure as her torso is so short. Let’s run some tests just to put my mind at ease.”

The following is what he the doctor actually said: “her liver feels really hard – you should have waited until after the appointment to get her blood work done – so I could have added some things.” Then he proceeded to sit down and when I finished dressing my daughter he began to explain that “she is at risk for liver problems and if she were to have liver failure, because of the CDG she most likely would not qualify for a liver transplant.”

I felt like I was going to be sick, I could feel all the blood rush out of my head and actually had to support myself on the desk next to me. Why on earth would he ever say something like this without knowing for sure if my princess does indeed need a transplant. The rest of the appointment was just a bunch of babbling. The best way to describe the doc talking afterwards was like the teacher in Charlie Brown.

It didn’t matter what he said all I kept hearing over and over was “would not qualify for a liver transplant.”

I’ve said many times that I’m not a doctor or a health care professional, BUT I am a mum – and common sense tells me that one should NOT talk about transplants or not qualifying for them unless one has substantial proof that it’s needed.

So now here I am thinking all these horrible thoughts that no mother should ever have to think because a doctor didn’t think about what not to say.

I ended up stopping in at my family doctors office on the way home, came into the office which had just closed with blood-shot eyes from crying the whole way and tear stains on my cheeks to try to get a second opinion.

All I can say is thank heavens that there are wonderful doctors out there that have the common sense and bed side manner to put my mind at ease. She actually said it’s hard to tell because ladybugs torso is so short, and suggested we get an ultrasound and next time we’re at the hospital to get her port-o-cath flushed add some extra blood work. There was no talk of transplants, or not qualifying. There wasn’t even any hint of panic in her voice.

The aching pain in my chest had subsided and I took a deep breath and began to wonder why anyone let alone a doctor would ever mention this without knowing for sure that was the only plan of action left. Don’t get me wrong I’m a huge fan of doctors who plan ahead and prepare me for what could happen in the future but never to this extent.

Just makes me wonder if he has ever had to worry about what not to say.

Tags: Children, Congenital Disorders of Glycosylation, Doctor, Hope, Life