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.

Nearly live streaming

Whoa, Mom and Dad. What did they give me? Everything's in slow motion!

Keane was awake, but sedated for his echo and 3-D echo today in Portland.

Mom, where have you been hiding this fun thing?

First time in play gym. Special blanket props help make it all possible!

Fun on the Fourth!

West Springfield is too cool. On the Fourth Grammo's and Grampo's neighborhood organized a kids bike parade. Avery was full of birthday spirit for her country and proudly sported the biggest flag on the block (at least the biggest flag attached to a tiny bike).

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...!

Please consider the bottle!

It's nice to see you Grammo, but what is this thing you keep putting in my mouth?

Why is everything so pink?

Happy dancer (just getting this posted late)

Too cute

Looking up and getting heavy

Our appointment last Friday went really well. Between the disappointing weigh in on Wednesday and his Friday afternoon visit, Keane gained an impressive four ounces! Yesterday morning we went for another weight check. The minimum gain to reach our 20 grams per day goal was 1.4 oz; Keane gained 1.5 oz. The good news is... hooray, we made our goal. The challenge is that we barely made our goal and there is no end in sight that would grant me a healthy chunk of shut eye. The plan to alternate with Ben didn't really work too well. Keane was too asleep in the middle of the night to agree to formula consumption through a dropper.

Keane has greatly increased his formula consumption during each feeding from about 0.5 oz to 1.5 oz. Not much luck on the bottle front to date, but we will keep trying. He has a huge amount of energy lately and certainly doesn't appear to have a significant health issue. His oxygen saturation has been steady between 87 - 90 without using supplemental oxygen. On average, he is probably getting supplemental oxygen less than once per day.

Onward and upward with improvement and optimism...!