Unfortunately, my weekend getaway to Vegas has been postponed. The reason is quite sad and scary. A warning: this might be hard to read (and was even harder to write).
Bub is still refusing to eat and is drinking barely enough to keep himself hydrated. I've been advised three wet diapers a day is the absolute minimum. He used to average 7-8 per day, yesterday and the day before he had 5, and today he only had 4.
Bub's new pediatrician, Dr. P, ran some bloodwork earlier this week and we got the test results back this afternoon. Most of them looked fine, including a preliminary allergy screening which came back negative for all the major culprits -- dairy, wheat, peanuts, grass, dander, etc.
But one of them, called APL (alkaline phosphatase) was extremely high. Normal is between 100-400, and Bub's was over 1,300.
The good news is, even with the elevated APL, all of his other tests were either negative or within the normal range. According to Dr. P, this rules out diseases and cancers of the liver and bone. It also means his kidneys, heart, and lungs are also functioning properly. *Whew.*
The bad news is what the elevated APL means for Bub's muscles. An elevated APL is an indication of malnutrition, and when the body isn't getting the calories and nutrients it needs, it starts eating away at the muscles.
You're probably re-reading that last sentence, just as I made Dr. P repeat it to me. His body eating its own muscles. Come on, that's just not right. Kids' bodies aren't supposed to do that. And they're definitely not supposed to starve themselves, especially when they're otherwise healthy.
So what do we do next?
If Bub has less than one wet diaper in 8 hours or less than 3 in a day, we'll take him to the ER at Doernbecker's Children's Hospital (DCH) for IV fluids. This is just a temporary fix and we might have to do it every day until we find a more permanent solution. In the meantime, we're following him around with sippy cups and syringes trying to get as many fluids into him as possible.
The permanent solution will have to come from the gastroenterologist (GI) specialist, her name is Dr. T and I've been told my numerous people she's the best. Bub is already a patient of hers, thank goodness (and thanks Mom for being on top of things). We've seen her every couple months since Bub was 3 1/2 months old. She knows his medical history, and combined with the test results from Dr. P, hopefully she can help us develop a game plan.
For those who know me well, you know I've done all the research, called the family friends who know people in the medical field, compared notes, done the pros and cons. I also have a pretty strong feeling in my gut, and it's telling me Bub needs to be on a feeding tube (and the sooner the better). It might only be temporary or he could need one for a while. At this point no medical test can tell us why he refuses to eat, but as Bub's Mom, I can see it, I can sense it ..... eating somehow causes him pain.
And if a feeding tube is what's best for Bub, it's also what's best for our family. This has been a stressful year, but in the last couple months that stress has increased significantly. I'm scared. Dh is scared. Oma, Pops, Nana Debbie, Tanta Tina, everyone who knows our family, they're scared too. We all love Bub, and we just want to see him get better. We want to see him playing with trucks, throwing balls at his sister, not curled up in a ball because his tummy hurts so bad.
If you could please say an extra prayer for us this weekend, we'd really appreciate it.
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