A Different Kind of ER Trip

Let me start this with John is fine. Now I'll tell you what happened and what is and will be happening.

John has worn a Clonidine patch since he was still intubated and in the PICU, it is medicine for his blood pressure and also an anti-anxiety medication, a mild sedative type thing. At that point he needed it, he was freaking out about every light change, noise, or new person that might come in his room or talk too close to his open door. Even at our last appointment we were thinking that there really was no need to change this now. Sometime last week the patch fell off. We have no idea when, what we do know is that by Thursday and Friday we had an almost different kid, so much more energy, ability with everything and wow, just so on all the time. No need for a nap, run, run, run, he was learning things faster, sitting up straighter and everything was way so very very cool, instead of like all the lights were on in there it was like the sun itself was shining in there. Saturday morning when we went to change his patch, this is the normal day, it was gone, so I took his blood pressure, it was a little high but nothing to run to the ER about and put on his new patch. Through the day on Saturday we still had this amazing way more John, whizzing quickly through our house. He slept through the night Saturday night and on Sunday I had to go wake him up, this is strange, and he was so very groggy.

We walked to church and I thought he was leaning and keeping his eyes mostly closed against the sun that was shining in our face, but during church he just sat there and finally asked if I would please just hold him. At the end he wasn't really interested in going and shaking people's hands and even though his friend wasn't there for Sunday School and we did it anyway there was no sparkle, no enthusiasm, no real interest other than just to be there. Mark was gone by this time, he had already noticed that John was down too, but had to go to the country church and when we finished Sunday School John and I walked home. He could barely keep up with me, didn't run over sticks, had no pleasure in spinning circles in the loose dirt and didn't even notice that there was water to run through, just plodded along home, where he just sat and watched tv and didn't even care to choose the show. By the time Mark got home I was beyond just a little worried. We figured it was the patch, nothing else was wrong, no indication that he was sick at all, just this lethargic uninterested noodle of a boy sitting idly in his chair like nothing interested him at all. We put him down for a nap and called Omaha. They said take him in if we thought it was necessary and they would readdress drugs on Monday.

We loaded John up for the ER, he sat all the way to town, never tried to roll down the window, never changed the movie or flipped through it, never asked for a drink, or kicked his feet into the back of the driver's seat, just sat there. When we got to the hospital he told us we were at the Tiger hospital and plodded in. We were there from about 3p to well after 9 that night and finally about 8 John smiled for the first time that day. Everything checked out, labs were fine, blood pressure was fine, everything was fine and it was definitely the meds. We knew this going in, but we had to make sure and were relieved and determined that John be taken off this medication.

Monday came and the docs came up with a weaning plan. So John is now on a half dose this week, he is acting way better than Sunday and a little better than his normal with the full dose but no where near the sparkly whizzing speed demon that he was on Thursday and Friday. If his blood pressure stays steady through the week he will go to 1/2 of this dose next week and if he remains stable will come off this drug completely at the end of that week. If he needs blood pressure medication they will move him to an oral med that doesn't have the sedative side effect to it. John understands this and is glad that the medication is going away, Mark and I are excited, we can't wait, we also know that full time John with that new energy level is going to be a handful and will need many more things to direct his attention and keep him busy but who cares, just to see him so very very alive, almost on fire, is so amazing, it's so very different than anything we have seen of him in his whole life and yet it's something that we've always seen a spark of here and there, we are eagerly awaiting the return of the full glow!