Bogus weight gain

Sigh.

I took Keane in for his weight and oxygen saturation check today. Both results were still acceptable - 2.5 oz of weight gain since Friday and O2 sats between 84 and 88. A little lower than last week on the O2, but still above the indicated alarm level of 80.

I decided that if I did not check in with Dr. Bob, I would regret it. Since Thursday, a few symptoms/behaviors had bothered me. First, "hello, anybody home?" Keane has seemed a little "checked out," for lack of a better term. Second, he doesn't seem to have much appetite when he wakes up in the morning. Last, I cannot seem to control his temperature. Mostly, he seems to be getting too hot, without reason (we are lucky enough to live in a house that essentially never changes temperature). Dr. Bob did a physical exam for cardiac issues and, sure enough, his liver had descended in his abdomen again (i.e. - mild congestive heart failure). As a result, we've increased the Lasix to try and remove excess water that may be accumulating around his heart and lungs. He'll probably drop some weight again as his body gets rid of the extra fluid. 

What's next? Good question. I spoke with Dr. Kelly today. The marching orders are if my Mom-dar says he is getting worse, drive him to Portland. Ironically, tonight Keane started sweating again while nursing (aka getting worse). Luckily, now I am am an old pro. I gave him some passive oxygen, a few kisses and put him to bed. Then, I called Dr. Bob again (this man should get an award for being the most rockin' pediatrician ever). Because I had only just administered the increased dose of Lasix, we couldn't expect dramatic improvement yet. If he is unchanged in the morning...northbound we will travel. As Dr. Bob said - there is nothing we can do for him in Eugene... he needs a Peds Cardiologist to examine him.

Where will we be by tomorrow afternoon? Your guess is a good as mine.

Rockin'

Sunday fun!

Success on the scale

Today Keane weighted 11 pounds, 12.5 ounces, aka officially the most he has ever weighed. That's three ounces in two days (normal weight gain is 0.5 to 1 ounce per day) . Excellent!

No word from OHSU re: surgery date.

Nice day for some fishing, even if the water was only a few feet deep (and there were no fish)

Polar Bear Club Official Member

Our neighbors, the Eason's, filled up their pool with fresh water last weekend. Avery took the first official swim of the season.

Ha, I've got you all... with my hands and feet!

Cake decorating

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...

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.