reuben's adventure

We're clearly not as good about posting as we used to be, but did have some news we wanted to share.

Yesterday Reuben had another procedure to change his g-tube to a skin-level "button."  It's already a huge relief to have one fewer tube sticking out of him that can get caught on things!  Basically the tube works exactly the same way as the one we've had since May 21, so it was nice not to have another learning curve.  The procedure itself was pretty easy and much more painless for Reuben than the first surgery.  As I warned them, they had to give Reuben a pretty hefty dose of Demerol to put him out, and he stayed asleep after that for quite a long time.  After about an hour and a half, the nurse started checking with us every few minutes to see if we'd been able to wake him up -- I think they wanted us out of the recovery room!  I worried that with a four hour nap and falling asleep in the car on the ride home, he'd keep us awake all night, but he went to bed at the regular time.  He did think that 5:45 would be a good time to get up this morning, though.  He's always so happy when he wakes up that it's a joy any time.

Before the procedure, he had his regular high-risk infant follow-up with Dr. Klein.  They'd asked us to turn him down to .5 liter of oxygen in the morning before the appointment so they could see how his blood saturations looked after several hours on that level.  They were perfect!  However, when they did the room-air test (no extra O's), he did desaturate with physical activity (i.e. crawling and walking with help all around the exam room).  So we'll stay at half a liter until his next appointment at the beginning of December.  Dr. Klein said that the goal is to have our Christmas present be to take photos without the oxygen.

He looks great developmentally.  His walking is a bit delayed, but that's not unexpected -- and the fact that he can move around at all with the oxygen tube getting caught on things is a wonder to me.  When it gets stuck, he just turns around and gives it a yank.

Reuben's weight gain is still on track at the 25th percentile, so we'll stay with the same baseline amount of calories through the g-tube.  We talked briefly about his feedings and Dr. Klein said Reuben is reminding him of another patient named Josiah, who also had ECMO, multiple pneumothorices, etc.  He said Josiah's eating improved slowly from the time he was 2 1/2, and that he came off the g-tube when he was 4.  We're happy to do whatever Reuben needs to grow up healthy and strong.

Other than that, we spent most of the time discussing the last Harry Potter book, since we and Dr. Klein are big fans!  

It's hard for me to believe that I let the anniversary of Reuben's homecoming, on August 9, pass without a mention.  That certainly was a joyful day that we will always remember -- like another birthday for Reuben.

Love,

Jonna, Eric, and Reuben