Friday, February 19, 2010

Birthdays and Behavioral Changes

Congratulations, Eli, on your first birthday! We celebrated quietly at home, opening gifts from friends and family. We later caught up with some of the grandparents in our usual fashion, our dearly appreciated Skype and a webcam.

We're noticing drastic changes in Eli's demeanor and activity. Certainly, this is related to his pacer and improved cardiac output, but we think it might also be due the reduction of one of his medicines, Reglan (metaclopramide). This drug is used to speed the processing of his feeds, allowing us to push as many nutrients through him as possible. It's also a bit of a controversial drug, in that some of the potential side effects can be pretty intense. Many of these side effects are based around confusion, a mental "fog," and a depressed mood. Unfortunately, we've just had to surrender to those possibilities because getting more food into him has been so important, to maximize his physical growth and strength. Without the Reglan, it was very common for Eli to retch many times per day. This would turn into a choking event, and we'd watch his heart rate plummet as it starved for oxygen. Several times per day, it really was as terrible as it sounds.

Lately, we've been able to both increase his feeds and, at the same time, decrease his Reglan. He's now getting 60% of the Reglan he was getting, and we're working our way toward total elimination, if we can. We haven't seen Eli retch in a couple weeks, and only a couple times since his pacer implantation. We've asked Dr. MacDonald if there could be any correlation. He explained they were theoretically possible, but far-fetched at best. Whatever the case, Eli is clearly more alert and active lately.

He's also much more mobile than ever before. He's figured out how to roll himself around and find himself on the other side of the room. We've had to add an extension hose to his oxygen feed, to allow him a longer "leash." He's moving across the floor to grab for toys or satisfy curiosities. He's learning how to get himself into trouble... and we LOVE it!

Here are a few photos from him first birthday.

Wednesday, February 3, 2010

Home again, with a catch

We made it back home today. Eli has slept terribly at the hospital, never more than 15 minutes at a time. When we started heading home, he was sacked out in the car in very short order. We brought him, fed him, and he slept for 3 hours. There's just nothing like your own bed, huh?

Paige has spent the last few days staying at a few different friends' houses. Today, she picked up a low grade fever. She's feeling fine, and just like we thought, it hasn't slowed her down at all... but it means she can't be near Eli for a while. She'll be staying with Nanna & Nanno until Monday night. Maybe we'll get to be an entire family unit soon!

On a different note, Eli is a notoriously difficult "poke." It's extremely difficult to get IVs in him, partially because he's been stuck so many times in his life, it's hard to find a clean spot. We've actually reached the point where the phlebotomists aren't allows to poke him any more, they always call in a PICU nurse. One area they've never touched is his head, where the veins are HUGE, shallow, and plentiful. As one nurse stated "His head's like a gold mine!" The downside is they have to shave his hair to get to them. Poor little guy! :)

Here he is at home, tonight.