Medications. They are the life-line of the nicu. Something is always being given, usually multiple meds at once. At times they’re lined up, too many meds and not enough lines to give them. You wonder about side effects, and research them if you’re brave, but you rarely say no because these medications are helping your little one maintain this delicate balance of life. James has been on numerous medications in his short life, far too many to count. Many were life-saving and many others were used for pain relief. Sedation medications were used to keep James comfortable while he was intubated in December. Because he was on some of these meds in the nicu, he already had a tolerance to their effects and required a higher dosage than they typically use. His doctors told us that right away. What I didn’t realize then, was how addictive these medications are and how difficult it would be on his body as they stopped using them.
James is going through drug withdrawals. Initially he displayed some pretty typical symptoms. He did a lot of kicking and flailing. He had an increased heart rate, night sweats and vomiting. His symptoms are more subtle now, but just as real. At least to us they are…
He’s experiencing a lot of difficulty settling into the rehab hospital. Is it his new surroundings or drug withdrawals? The answer to that question has been debated between the doctors and ourselves pretty much since James was admitted. Parents know their children better than anyone else. We know James inside and out, but there is no way for us to give them a full picture of James’ personality and behavior without looping videos of him 24/7 on the tv screen in his room (which we did consider!).
We see withdrawals, the doctor sees difficulty adjusting. So, we disagree. Consequences of disagreeing – We go HOME!!!
It’s not because we’re being punished for disagreeing (although it did feel that way very briefly). It is because everyone believes (and we agree) that if he truly is having this much trouble adjusting to rehab, home is probably the best place for him. Nothing beats the kind of healing you can do from a loving, calm, peaceful home. And, we’re keeping our fingers crossed that maybe, just maybe, he’ll start to eat again once he’s home and we can put this whole experience behind us. So anxious for James to be eating, running, playing and medication free, at HOME!