Friday, April 4, 2014

waiting for the phone to ring...

M saw the doctor yesterday... He's been such a complicated kid medically, and unfortunately he doesn't seem to changing as he reaches adulthood.

The biggest concern I had, and the reason I made the appointment, was more weight loss. From what I understand weight loss isn't uncommon with gastroparesis (which he has had since about 2009)... M has a good healthy diet, but it must be low fat, and he has to avoid foods that slow digestion. Increasing portion sizes or fat will trigger the severe vomiting spells he gets... which can cause tears in his esophagus and weight loss instead of gain. So it's become a sort of a catch 22. To gain weight he should eat more, or richer foods... both of which trigger the vomiting spells. The last time we were in to the see his PCP... when he'd lost 10 lbs over the previous year, she was concerned and wanted me to let her know if the weight loss continued.

I thought he might have lost a little... but as K (dd#3) was getting ready to head back to Ghana, and was weighing her bags M got on the scale... and I was shocked to see he'd lost almost 10 lbs more. So he's down more than 20 lbs in less than two years.

It might be the gastroparesis... but it might also be diabetes. Diabetes is always tough, but on top of what M already has going on... it sounds impossibly difficult. The doctor ordered a bunch of labs yesterday, hopefully we'll get most of the results back today.

I startled awake last night from a sound sleep... heart pounding from a bad dream. The dream? The doctor calling to say that M has diabetes.

M's also been having back pain. I hadn't worried too much about it at first, he tends to get aches and pains... possibly because he's always kind of off-balance since his right side is so much weaker than his left side. (Something that's become more pronounced as he's gotten older.) But he's been complaining more about his back lately rather than less so I asked his doc about it too.

She examined him and says it seems to be skeletal... not muscular (alarm bells started going off at this point, after all his hips problems the LAST thing he needs are more orthopedic issues!) and she's concerned his vertebrae might be somehow compressing together. She ordered a bunch of x-rays and depending on what they show he might need an MRI too. Again, we'll know more later today after she's had a chance to see the films.

So today will be spent waiting for the doctor to call.

Poor M... he's such a trooper, he has so much going on and yet he's always sunny and happy. He never complains about all that he has to deal with... he never asks "why me".

I'll be saying lots of prayers today that the results from both the blood work and the x-rays is good... best case, rather than worse case, scenario.

Edited to add:

I heard back from the doctor... all the labs are good, no diabetes! She wants us to look into a stomach "pacer" (like a pacemaker for his stomach) because she thinks the weight loss is all from his gastroparesis. The pacer seems to be something that is brand new, and so we'll have to think about for awhile. The news about his back isn't as good.. he has a slight curve in his spine fairly high on his back (scoliosis), which can cause pain, but he also has something called spondyloysis (a defect in the connection between the bones that make up the spinal column) at his L5 vertebrae... a CT scan is next to see the extent of what's going on and figure out what to do next.

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