August 13, 2011 was a frustrating day. See, they did Keean's weight checks every morning at the same time every day. They brought in scale #1 (all their scales are numbered and when a baby has weight issues they ensure they weight the baby at the same time with the same scale to avoid any difference) so his weight was as accurate as it could have been and he had LOST weight :( Seriously? We got to the point where we lived for these weigh in's. In fact, some of his nurses would stay a little late after their over night shift to see this number. Our heads would all meet in the middle above the scale and wait patiently as the red light would blink until it was ready to tell us the number. Keean had been doing fairly well with weight gain since his feeding tube was placed, but something changed. We weighed him in grams (and still did up until a few months ago) and one day he was 4.04, the next 4.01. This was almost an ounce in the WRONG direction. I wanted to cry. I asked them to do it again.....and again......and still nothing changed. He had lost weight and no one knew what to do.
This was frustrating, but the doctor talked with us and ensured us she would be back later with the GI doctor to discuss a plan. They were going to have a meeting and figure out what our next steps were. How long did we let him lose weight before intervening or trying something new? What was causing him to not absorb nutrients? Why, even if he's not puking as much is he not able to gain? It was confusing and frustrating and I felt defeated.
Well, when the GI doc and the regular pediatrician came in to talk to us they told us that Keean was one of the mystery babies. They didn't know what was going on. Great. Now, there are times this is funny when your child (or yourself) is completely different and confusing. I take pride in being a complete mystery to people at times. I think it's great when my kids are who they are and don't follow the norm, but not in this case. It was a terrifying feeling to hear that the most educated doctors in the state and some of the country had no clue what was going on with Keean. And because they didn't know what was going on, they really couldn't do much to help him. UGH. I remember crying. I didn't want to hear we had a mystery baby. I wanted to know exactly what was wrong and I wanted to do something NOW to fix it.
They discussed doing an upper endoscopy. They would put Keean under and go up his nose, down his throat and into his stomach and upper intestines with a camera and take a biopsy of his stomach and intestines to test for different things. Now, they said they weren't sure what they would find with this because the things they would think of testing him for should have been ruled out in blood work, but it was something to try.
They also wanted to change his formula to see if it would help with anything, which they did, but his watery stools continued and his weight gain didn't improve....so we were put on the schedule to do the endoscopy and pray for answers. In my caring bridge post on this day, I can still feel the frustration and sadness, the comfort of being in the hospital and the aching to be home. It was a rollercoaster.....and that ride was just beginning.
You're so right: there are times when we want to be mysterious and unique, and other times when it's not a great thing at all to be the odd one out. I cannot imagine what it must have felt like to have the doctors tell you that they don't know what's going on. We put so much faith in the science and knowledge of medicine, and yet, a great deal of it ends up being an art, dependent on creativity, intuition, empathy, and plain old stubbornness.
ReplyDelete