Written March 10, 2010 - 10:33pm
(From CaringBridge Page)
It has been one of the toughest days. Jayden's kidneys continued the downward slide and by mid-afternoon his labs were looking very bad with no output for 24 hours so Alicia was faced with a very difficult choice to let Jayden grow his wings or try to do kidney dialysis in hopes of relieving the pressure & giving the kidneys a chance to restart.
We had a quick bedside consult with Dr. Bliss, the surgeon who is expected to do the CDH correction surgery & the neonatal kidney specialist (I can't remember his name) for about 20 minutes. We were weighing the encouraging signs such as a good kidney ultrasound that suggest they may be able to restart given the right treatment & continued reasonable oxygen & CO2 levels (considering the assault the kidney failure is putting on all his systems) & the negatives of the procedure & the sky high panels almost but not quite to the point of no return. The doctors are not sure why he has taken this turn as there appears to be no obvious cause but are suspecting an infection not evident on the blood workups. They are running 3 different antibiotics in attempt to knock it down in this is the cause.
We also looked at the logistics of getting a good access location as the neck is not available since it was used for the ECMO before & can't be used again, going for the groin which is horribly swollen & may not be big enough or a doing a peritoneal dialysis which goes through a membrane in the abdomen that works well for non-CDH babies but they had not tried in a CDH one here before & might pose some big risks because of the lack a complete diaphragm. After weighing the options we were willing to let them try the peritoneal access with the understanding that if they couldn't gain access there or saw signs of distress they would go for the groin. It was also made abundantly clear that no matter which route we go if he does not improve pretty quickly we will be out of options.
Luckily they got good access right away & took a lot of fluid off him but his pulse is still very high & his blood pressure is still VERY low so it is minute by minute again. Alicia has been so brave through this & is fighting for him but also looking for signs from him if it time to let him go. As much as we still pray for a wondrous miracle she knows that point may come much too soon. After a long exhausting evening we are home to try and get some rest & pray the phone doesn't ring in the middle of the night...
We got a few family friends through tonight to visit & going to try and get the remaining through tomorrow just in case.
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