03 Feb UPdate
Unfortunately, I don’t have the update I wanted to have for tonight. We’re still waiting on results from Keegan’s liver biopsy. Keegan is doing alright. He had a pretty rough night Saturday with lots of air in his bowels as they “woke up” from his surgery last week. His diarrhea is back in full force and already taking a toll on his bum. He’s still in a good mood (when isn’t he?), and we are thoroughly enjoying his smiles with clean cheeks! His g-tube site is looking pretty good, but we still have 7 weeks to go before it is replaced by his “button.” Keegan’s progressed from 10ml/hr pedialyte in his g-tube to half-strength formula and today to his normal 24kcal Neocate. He’s still at 10ml/hr, but it will take us awhile to get back to 30ml since we will only progress by 1 or 2ml every day or so. Lastly, we seem to have found Keegan’s “happy place” with his GCSF, and we’ve been able to keep his ANC and white counts within the normal range for a week now. His last transfusion is holding his red counts pretty steady, and his platelets had even come back up a little bit. I honestly thought they had handed me the wrong kid’s labs today when they looked so much more normal!
We were hoping to have more info from his liver biopsy today, but the pathologist wants to look at the tissue under the electron microscope now. We were told “mid-week” for results now. The liver biopsy is really the last thing we’re technically waiting on, and of course, starting any further treatment that would follow from a diagnosis. We’ll go home on whatever amount of TPN we’re on when the liver issues are resolved. The first impression given by us up until today was that the biopsy would give us answers, but it would take several more days to pinpoint it. We didn’t feel that we got that feeling from the doctors today. If the liver biopsy ends up not giving us any answers in the end, we’ll have to reevaluate our need to get a second opinion elsewhere.
And now for the completely unrelated ending to the post…
HAVE YOU READ “THE SHACK” by William P. Young YET??? One of our CVICU nurses recommended it months ago, and I just got around to reading it. Amazing. If you feel lost in your relationship with God, start with this book!