Decision Time

Well unfortunately Greyson has continued to struggle with his breathing (well maybe a more accurate way to put it is he’s struggling with his ventilating?).  His CO2 numbers continue to be high and he is maxed out on the vent.  The Dr. came in and talked to us tonight and basically informed us that we would have to do something soon.  The options are limited.  They can’t go any higher on this vent so the only two options are 1)  Start a short round of steroids or 2) go back to the jet vent.  There are problems with both choices.  Greyson left the jet vent because he was fighting it to much for it to be effective.  The jet vent also agitates the lungs, even though it is doing less damage than the conventional vent.  If we went that route at some point he would still have to come back to the conventional vent and would probably still struggle to ween off it.  So the steroid option is the one the Dr. recomends.  Usually children do well and the steroids give them just enough push to get them off the vent.  Their lungs can then heal and grow and they can progress after that.  The down side is the use of steroids is linked to things like brain damage, slow growth, and cerebal palsy.  There would also be a risk of another bowel perferation.  Basically tonights Dr. will watch him overnight and consult with the oncomming Dr. in the morning.  They will then call us and together we will decide what we are going to do.  At this point Stacy and I are favoring the steroids and praying they will work very quickly so he will only be on them for an extremely short time.  This should greatly reduce the negative side effects.

On a positive note Greyson looked a lot better today.  His hands and arms were not puffy at all.  He still had a little puffyness in his face and legs but markedly less than he has had.  We are very thankful for that.  His weight was basically the same as yesterday which is also a very positive thing.

So pray for Greyson’s lungs and for us (the Dr’s, Stacy, and I) to make the right decision about what to do at this point.  It is not an easy decision but he has to be able to breath if he is ever going to be able to come home.  With the ventilator damaging the new lung growth something has to happen so that he can get ahead enough to get off the vent so he can heal.  Steroids look like the most promising solution at this point.