Still Here

It's been several days since I've made a little time for this blog.  Since I last updated not too much has changed.  Clayton is still on 3 West, but he's no longer on Intermediate Care status, which basically means his nurse can have more than two patients.  With the change, we had to move rooms, and unfortunately, we're in a much smaller, very dark space with a baby whose monitors alarm constantly.  It hasn't been great, but we don't have much choice, so we have to make the best of the situation. 

Clayton is getting out of bed more and more each day.  He's doing a little walking with some assistance, but he's most fond of driving a Lightening McQueen push car around the unit.  We try to make that a daily event.  I'm now able to move him around without any assistance from the nurse, which makes getting out and about a little easier.  The hospital is built around a center courtyard, and once you get out of the units, the interior wall is glass and looks out over several beautifully manicured balconies, and the gorgeous courtyard.  We can't leave the third floor, or go outside these days due to hospital construction, but it's still a beautiful view, and it's California, so there's plenty of sunshine coming through those windows.

We try as much as possible to get all the unpleasant things of the day accomplished in the mornings.  That includes blood draws, x-rays, dressing changes, etc.  Then we're trying to get him up as much as possible.  He usually takes a nap in the early afternoon, and we try to get him into the playroom at least once a day.  They're open from 2 to 4pm and 6:30 to 8pm most days.  Today he and my dad were able to spend a good part of the afternoon playing the Wii in there, and I know Clayton was in heaven. 

As for issues, Clayton's chest tubes continue to drain quite a bit of fluid.  Chest tube drainage after a Fontan is a known problem.  Most kids deal with it.  It's extremely unpredictable.  Sometimes it stops suddenly, sometimes it slows down over time.  Sometimes it stops and then starts again in the future, requiring the placement of new chest tubes.  Clayton's fluid is still significant.  He drains a lot of protein and electrolytes from his blood into this fluid as well.  We haven't had much trouble with the electrolytes, but his albumin (a blood protein) levels have been very low, necessitating albumin infusions, which have required a well functioning IV, which has been another issue. 

Our newest problem has been coumadin.  Clayton started on coumadin about five days ago.  It takes a while to find a good dosing amount and schedule and it's pretty unpredictable in kids with significant chest tube drainage.  Well, this morning his INR was 5.  They would like to keep it between 1.5 and 2.0, so this was a shock and can be very dangerous.  They ordered an echo to make sure there wasn't any bleeding from his heart.  His nose has been bleeding just slightly most of the day.  They decided not to change the dressings on his chest tubes because he's kind of a trasher, and they were concerned one might become dislodged, and he would have a bleeding emergency.  And, of course, they stopped his coumadin, aspirin, and motrin, which all have blood thinning properties.  It will probably take a few days for his INR to drop back down into the range they want, and until his chest tube output decreases significantly, they probably will not restart the coumadin. 

Ryan and I were talking tonight about recovery from these surgeries.  It seems like in our cases, the heart is rarely the hold up in our kids' recoveries.  It's always something else.  It's chest tubes, or kidneys, or INRs, or infection, or so many other things.  Right now we're really just in a holding pattern, waiting for this drainage to stop and trying to manage all the little complications it causes.  We appreciate your prayers.