Jack has such a complex medical history that Jon and I have to become detectives out of necessity, trying to investigate a multitude of theories, try different remedies, and pray to God that we are making the right decisions regarding Jack's health. He was very miserable for three days and I was praying that it wasn't a shunt malfunction. That is always the scare, underneath it all.
The first year after being discharged from the NICU, at the sign of anything suspicious, we took the better safe than sorry approach and just went in. No questioning. No debating. It's just something you do. There is absolutely no compromise with those little, at-risk immune systems. But now that Jack is three, I find myself constantly debating what we should do.
There wouldn't really be a debate if we lived somewhere else. Unfortunately for Jack, we live in a town that is sorely not meant for pediatric care. It is always the big debate - to take him in or not. It is the single hardest thing for us about having a former micro preemie - where we live. There is no pediatric neurosurgeon, no pediatric anesthesiologist, no pediatric anything, really, besides Jack's "vaccine doctor" (pediatrician) as we affectionately call him. Basically we try to keep those visits to when Jack gets his flu shot or any vaccine that he needs. We try to take his care anywhere else (at least to a town two hours away)... unless we are in a bind. Jack has about ten specialists spread across our state. It's just the way we've had to do it, living where we do.
When we bring Jack in to our small town hospital, they immediately see his thousand pages long medical records, and for lack of a better term, freak. I don't want to subject Jack to a bazillion different tests and useless pokes and prodding when he doesn't need it. They act like they are searching for a needle in a haystack. That is so traumatizing to an already hospital-ed out kid.
So I find myself setting up ultimatums. Little markers for myself to decide the next step. "If Jack isn't acting better by noon, then we will go in". Do you find yourself doing this? The constant weighing of the pros and cons is enough to send this micro preemie mama's blood pressure through the roof.
We were definitely in a bind this weekend. Jack was lethargic. We just held him for hours and hours. We kept him hydrated. Thank God for feeding tubes or else we would have had to go in for an IV, I'm sure of it. Yesterday morning, after a good night's sleep, he turned a corner. When he ate a few bites of breakfast yesterday morning, I knew he was feeling better.
Thank God. This preemie life is just hard sometimes.