Thursday, July 12, 2012
Scales, scales and more scales
On Wednesday, I took Keane back to his pediatrician for a weight check. On 7/5 he weighed 11-11. On 7/11 he weighed 11-9.5 on "his" scale in Room #4. Not eating for seven hours on Monday did take a toll, apparently; however, not the five ounces lost that registered at his cardiology appointment on Monday afternoon. Another weight check tomorrow...Friday.
Hoping to hear from the Peds Cardio office tomorrow re: more detailed surgical plan tomorrow also...
Hoping to hear from the Peds Cardio office tomorrow re: more detailed surgical plan tomorrow also...
Monday, July 9, 2012
Tentative timeline for surgery
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.
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.
Nearly live streaming
Keane was awake, but sedated for his echo and 3-D echo today in Portland.
Sunday, July 8, 2012
Mom, where have you been hiding this fun thing?
Thursday, July 5, 2012
Fun on the Fourth!
Baby weight watchers?
Have I taken my job as super feeder to the extreme the last couple days? Possibly. Who cares if I have pumped a billion calories into my little man? Enough to gain 4.5 oz in three days! Yes, it's true! Our reward... sleep. We can now put Keane to bed at his normal bedtime and only wake up one time around 2a or 3a to feed him. Dr. Bob said we may have to "start him on baby weight watchers" if he keeps this up (Just kidding! He did say that, but he was kidding too). I am reducing his "super high" calorie supplement to only a "high" calorie supplement. We will see how the weigh in goes at the cardiologist on Monday....
No feeding tube. No feeding tube. No feeding tube...!
No feeding tube. No feeding tube. No feeding tube...!
Tuesday, July 3, 2012
Please consider the bottle!
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