Whack-A-Mole

Caring for a medically complex child often feels like a game of whack-a-mole. The first two years of Wesley's life were mostly filled with hitting the feeding "mole." We battled with nursing, growth, vomiting, oral sensory issues, etc. as our main focus for two full years. Yes we followed up with many other specialists and had many other issues we dealt with over those years, but the prevailing issue was feeding. Then just as he started growing and stopped vomiting, just as we felt like the feeding mole was finally pushed down, up popped the seizure mole. Our focus shifted to managing seizures instead. We spent the last year pounding on the mole fighting to find the right medication doses, identify triggers, understand emergency procedures, etc. And while we hit that seizure mole, the feeding mole started sneaking back up slowly as Wes stopped tolerating his nighttime feedings and stopped gaining weight. Just as we started getting seizures controlled enough to be able to alternate between whacking the feeding mole and the seizure mole, we looked over and the CP mole was up.  The CP mole was hiding there for a long time causing developmental delays but not anything requiring immediate medical intervention. But then this spring we found out Wesley needs surgery on his hips and we need to come up with better ways to manage his muscle tone.

So last week he switched back to the gj-tube because he was in pain while fed through his g tube at night, then today he had surgery followed by a 2-3 day hospital stay to trial a baclofen pump in hopes it will help his muscle tone, then while waiting for surgery and now post surgery, he's started having more seizures again. Whack, whack, whack.

We're exhausted.