11 Feb Update
Brief update tonight. I’ve been trying to finish up Keegan’s medical summary to be able to provide to referring hospitals. It’s taking quite a bit more time than I thought it would. For the record, I was wrong about the number of surgical procedures Keegan’s had in the last 16 months – 24 total requiring general anesthesia. Way too many in my opinion.
We have been playing with Keegan’s feeds the last few days in a desperate attempt to stop his vomitting. Today, we convinced the doctors to let us discontinue his nighttime feeds and add another 2-hour feed. That resulted in an overall decrease in his formula volume, but if we can stop the vomitting, we can hopefully make better progress in condensing his feeds to 1 hour each and increasing the volume and calories. The urine test they ran this morning showed that Keegan was a little “dry”, which may explain some of his consistently elevated kidney function numbers. We’ve increased the volume of his TPN, left it at 12 hours a day, and are crossing our fingers that Keegan doesn’t continue to lose weight as we work this out.
The remaining stool tests will take several days to finish. We have put Keegan back on GCSF three times a week because his hematologist was unhappy with Keegan’s ANC dropping under 300 in between doses. We still don’t have the final liver biopsy results. The pathologist had a death in her family and hasn’t been able to sign off on the final results…or non-results as it were. We put the wheels in motion to bring Keegan home tomorrow as we get our referrals in order. That’s about all there is to say for now. Our prayer request is now to find a hospital or doctor that will have an answer for Keegan.
One fun note, Keegan had his first real haircut today! Over the summer, my hairdresser, Holly, clipped the curl on the back of his neck, but he didn’t have enough hair for an actual cut until after the cyclosporine caused his hair to grow crazy fast and thick. He looks SO cute with his “big boy” haircut. I’ll post pictures as soon as I can. THANK YOU, HOLLY!
We’ll update tomorrow with more info. Have a good night.