Well, it was a long day today. Keane couldn't eat from 830a on for his 100p echo appointment, but he was a real champ. He actually slept for 90% of the time between leaving Eugene and arriving at the Pediatric Sedation unit at Doernbecher Children's Hospital in Portland. He fought the sedation at first. After all, he had been sleeping for the past two and a half hours before the appointment. However, once he "gave in" he slept through most of the procedure.
The echo was followed up by an appointment with Dr. Kelly, Keane's pediatric cardiologist. The question we all wanted answered -- the timeline for surgery-- was finally answered. Keane will have surgery within one month, hopefully in two-to-three weeks. We should have an actual date within a week, potentially by this Friday. We should prepare for the surgery date cautiously, as Keane could be bumped by newborns with emergent heart repair needs, which is why the "within a month" window was identified. Once Keane has surgery, he will spend one-to-three days in the pediatric ICU followed by about three days or so on the pediatric med/surg floor. There is a possibility that he could be discharged in as little as five days, then stick around Portland until his two-week post-op appointment. All small kids are off of pain meds completely and doing well by the two week post-op. The full recovery period is about eight weeks. Between six and eight weeks he will be able to start his therapy at EC cares in Eugene as part of his developmental care.
After our appointment, Keane had an EKG and then his pre-op blood work completed. The pediatric phlebotomist was great, much better than in Eugene. One quite poke, accompanied by a squishy face reaction, and it was over. The phlebotomist also remarked that she sees many children with DS come in for blood work. She perceived Keane's symptoms to be "very mild" relative to his peers. She was impressed by his developmental milestones to date, muscle tone and charming personality, of course.
After about seven hours without food, someone needs to eat again. Many thanks for all of your thoughts, prayers and optimism.
4 comments:
Charming personality...but of course! Is his weight gain still steady? He looks adorable in the videos, thanks for posting! Big Hugs all around xoxo
I need to take him to "his scale" at his pediatrician's office. At home, we went from 10-13 right after the Lasix to 11-11 on July 5th. At the Peds Cardio in PDX, we went from 11-1 pre-Lasix to only 11-6 yesterday - dismal weight gain. The discrepancy is too large, so I need to verify his weight tomorrow at Dr. Bob's. He really lost 5 oz between July 5th and July 9th?
What did you guys learn yesterday? I'm thinking of you this morning and sending out a big hug xo
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