22 May Labs & Pentam
Just a quick medical update on Keegan – he had labs and his monthly breathing treatment (pentamadine or “pentam”, as it’s lovingly called in the Center for Cancer & Blood Disorders at Children’s) on Wednesday. His pentam dose is based on weight, so we were able to see how the last two+ weeks of being on nighttime tube feeds only had affected him. He’s lost about a pound, but he grew 4 centimeters!! We haven’t heard from GI if they want to change anything, but I would hope they’d give him another month to even out. It’s not like he didn’t have any growth at all! And frankly, height is where he needed the growth anyway!
His labs were as stable as I think they ever have been for him. His white and red blood cell counts were pretty darn good! We’re waiting to see what his hematologist wants to change, if anything, about his shots. His liver numbers are still up but stable. Everything else looked great! Because of that, we’ll check them again in two weeks. What a nice break!
People often ask or assume that Keegan is afraid of the hospital or doctors. That’s SO not the case! He loves “his hospital”! He loves “his girlfriends” (nurses and staff) and all his doctors. If we pass the Legacy campus by our house without stopping, he gets upset!! It makes his day to say hi to everyone, and he absolutely loves to play behind the registration desk while waiting for appointments. The front desk staff at Legacy call him their “official greeter”. He knows just what to do in each location – gets on the scale and raises his arms in a “I’m so big” gesture during vitals, stretches his little legs for height, takes the blood pressure cuff on and off, doesn’t mind getting labs drawn as long as he gets to pick the room (always room #1 at Legacy but usually #4 downtown) and get the vials out, etc. This week he didn’t shed a single tear until the respiratory tech turned his DVD off at the end of his breathing treatment, which involves holding a nebulizer mask to his face while sitting in an isolation chamber. I have to make a point of taking pictures to document some of his appointments!
Keegan is a rare breed, I suppose, but it sure makes this crazy life we live with him a heck of a whole lot easier to manage! We love you, Bug!