Bundle of Joy
posted on 11/14/2007
Well, our little bundle of joy is still at home and we think he is adjusting well. He's quite a little character, and very stubborn and dramatic. Kelly and I are constantly looking at the other as if to say, "I wonder where he gets THAT from??" We love having him home, though, and we think he loves being home. It was 12 weeks ago today that he first went on ECMO.
We had another pediatric appointment on Monday, and his first physical therapy appointment on Tuesday. His pediatric appointment went well - no major changes in his medications or monitors, so those remain the same. He's on medication for his high blood pressure (a common problem for ECMO babies), reflux, his withdrawal from morphine, and a diuretic to help him "urinate" and continue loosening up items in his chest. He'll probably be on the reflux, blood pressure, and opium meds for a while, but we're hoping that he can slowly come off one at a time.
His first PT appointment also went well. We were given new exercises to do, so we're excited to try them out. His hands seem much more loose and relaxed than just 2 weeks ago, while his right leg is a little stiffer (it has more tone). Overall, his legs and feet have more stiffness in them than his arms and hands, but the therapist thinks that intense PT will really help. His neck and lower back have areas of stiffness as well, but we also have some good exercises to use for these areas. He'll likely have an official PT appointment once a week for the foreseable future, and of course his own Speck family version of PT when he's at home - "Speck PT Camp."
His feedings continue to be very inconsistent, and right now the tube is still in. He ripped the tube out the other night and so we tried feeding him only from the bottle. He did well at first, but kind of digressed a little so the tube is officially back in (thanks to Nurse Ann!). He sneezed several times in a row last night and as a result the tube came out again! SO, Kelly pushed the tube back in place while I held his body down (he just loved that) and Grana (who just came in from Nashville) put on the tape to keep it in place. What a scene that was!!
I think that's about it for now. Your prayers for his feedings, reflux, blood pressure, and his withdrawal are greatly appreciated. Again, thank you all for your love and concern for Bennett.
Love,
Travis, Kelly, and Bennett
