Day 2 Post-Op

Clayton, dare I say it, is doing pretty well.  Less than an hour after I typed my last blog entry, Ryan was calling me to get back up to the hospital because they were going to extubate Clayton.  Apparently he had grown so agitated and was thrashing around so much, they had one of two choices, 1) extubate and hope he makes it, or 2) fully sedate him and then have to wean him off that sedation later for extubation.  The choice was made, and Clayton was extubated around 6am.  He immediately asked for orange juice (of all things, he's not really a big OJ drinker), and that was denied.  For six long hours, we had to hold this boy off of fluids, and I think it took every ounce of energy either of us had.  He was desperate and angry.  When he finally had a little water, he announced he was done with water and wanted breakfast.  That was not an option for yesterday.  It was a long day trying to balance pain and agitation management.  He went through cycles of sleeping for about 30 minutes, and then thrashing around, attempting to pull every line out and even attempting to crawl out of bed for 30 minutes.  Then literally mid-thrash he would pass out with exhaustion and sleep another 30 minutes or so.

Last night was much better.  He was probably too exhausted to carry on his routine.  Ryan said his big craving all night was milk, which he was permitted to have.  Ryan said he was mostly restful and in a good mood.  Of course the minute I showed up this morning, that all changed.

After Ryan left, Clayton became severely agitated, much like the day before.  He was really irritated mostly by his nasal cannula and his Foley catheter, the one for urine (ouch!).  I pleaded with the nurse to ask during morning rounds if the Foley could possibly be removed.  After much discussion, it was agreed it would come out around noon.  The transformation was remarkable.  Clayton went from thrashing, spitting, and attempting to bite me to a calm, somewhat relaxed little boy.  He even, very patiently, had his common atrial line (catheter inserted through his incision into his heart) removed without any extra sedation.  He's been really good ever since.  He rested on and off pretty peacefully all afternoon and evening. He was permitted solid food today, but he hasn't had any interest.  The only "food" he ate today was a few bites of ice cream.  He did however, drink all day long. He watched portions of a couple movies, played with Legos from Miss Amanda, and even colored a little with some of the supplies his classmates sent.  I even saw a smile when I brought in Boco, his beloved, very large, giraffe tonight. 

Medically, Clayton is doing very, very well.  I'm very pleasantly surprised.  I would have never imagined he'd do so well so quickly.  My CVICU experiences are extremely skewed. Today the common atrial line was removed, which is a big prerequisite for getting out of bed, and his Foley was removed, thank goodness!  Tonight his milrinone, his last drip for heart function, was turned off.  If he does well with that overnight, there is talk of removing the central line in his neck tomorrow.  I would be thrilled, as I can't think of one surgery that our kids have had that didn't result in a central line infection, which is a real bummer.  If the central line comes out, the arterial line in his wrist will also most likely come out, which is a mixed blessing.  It's positive in that it's a step towards getting out of the CVICU, but it's a negative in that he'll have to have needle sticks for blood draws for the remainder of the hospital stay, and these people really like to look at blood, often.  There is also talk of Clayton possibly moving out of the CVICU tomorrow as well.  That would be a big step in the right direction. 

All in all, good news!  I hope to put up some pictures of Clayton tomorrow.  With Ryan and I switching off shifts, the camera never seems to be in the right place, and honestly, he's been so miserable we haven't taken too many pictures anyway.  Hopefully tomorrow will be a good day.

Clayton's kidneys are improving gradually, but his chest tubes are still draining quite a bit of fluid, so if all continues to go well, the chest tubes will be the deciding factor in when Clayton will be discharged.  Clayton will also be coming home on coumadin, which he will start in the next couple days.  We will have to get all that worked out as well and learn the ins and outs of coumadin management.  We hope that will not be permanent, but we'll just have to wait and see.