01 Dec Update
Sorry for the lapse in posting. The hospital networks were acting up, and we just had a nice weekend focusing on family. Keegan’s condition is pretty much the same. The pancreatic enzymes haven’t started working quite yet, but it can take up to a week to see a change in his absorption. His weight is up to 17 pounds now. Making progress there thanks to the TPN. Keegan’s white count is very low today, but his reds are just barely in the low range. He should be able to make it another few weeks at the rate his numbers are coming down now. We’re hoping to slow the need for blood transfusions if he begins to absorb more nutrients from his food. One fever spike over the weekend, but it seems to have passed. Still waiting to get a report from GI and hem/onc today. If his enzymes start working, we are hoping to discuss going home by the end of this week. You know how we hate to say that word until we’re on our way out the door!
Thanksgiving was probably the quietest one we’ve ever had. The hospital staff was cut to as low as possible, and they tried to send as many kids home as they could. Very quiet on the floor. My family brought plates of my mom’s wonderful Thanksgiving dinner up in the afternoon, and we all had our pie and coffee afterwards. Keegan looked too cute in his fall outfit, even if it was a little big for him. The rest of the weekend was spent playing with Keegan, watching lots of football, taking big family naps, and enjoying each other’s company.
I wish I could say it was truly peaceful, but Keegan had quite a few port mishaps, including a blood bath in the middle of the night Saturday. Gray was here, and Keegan seemed to be restless with some stomach cramping. Gray heard Keegan squeal a little, got up to check on him, and saw blood all over his face. He turned the light on and noticed Keegan had pulled apart a fitting on his line. Blood was dripping out of the port hub, which Keegan decided would be a good thing to chew on. There was even blood backing up into his ng tube! Gray had to sit down and collect himself while the nurses worked to save his port, which they did. One of the nurses said it probably wasn’t as much blood as it looked like. Keegan had just “done some fingerpainting with it!” After that, we found a central line wrap for Keegan to wear. One of the oncology moms created it after having similar problems with her daughter. Keegan’s a bit small for it, so he looks like he’s got a bulletproof vest on under his shirt. Still, it’s kept the fittings out of his reach and reduced his tendency to crawl and stand on his lines.
I’m going to try to post some pictures soon, but with the wifi down, connection is really slow. Keep checking though for some new pictures of Keegan in case I happen to get it to work. Thank you as always for your prayers and support. I hope you all had a safe, happy Thanksgiving.