Tuesday, March 15, 2011

So many new things to share!! We had visits from all 4 grandparents last month and Caelen was spoiled rotten. He's seen nephrology, pulmonary and phone consults with GI. Cardio is 2 weeks away, but we did get the final results of the cath. Where to start...

Cath results:
Overall, the cath went well, as we already knew. The 2 main findings are that his LPA is still narrow but there is nothing to be done about that yet, and that his inominate vein is still occluded. But, Caelen is now a better candidate for the Fontan (3rd surgery) than he was 1 year ago, and even 6 months ago.  This also means that we have a better shot at waiting a year or more before the next surgery.  Everyone agrees that Caelen needs to hit developmental milestones (walking) before we think about the Fontan.  The deciding factor will be his physiology and how his oxygen saturations are performing.

Speaking of oxygen, we are on day 9 of no oxygen during the day and he is doing PHENOMENAL!!  We saw the pulmonologist last week and she was very pleased that he is doing so well.  We are crossing our fingers that he continues to progress and that his lungs continue to heal and get stronger.  Here's a pic of him standing in his exersaucer, but he'll only stand in here, and only for the first few seconds, then he's back on his butt.

Pulmonary also agreed that Caelen had put on too much weight and that could have been a contributing factor to his dependency on the 02.  But now that we have figured out a reduced feeding regimen, and Caelen is becoming more active, the hope is that he will maintain the weight and grow into his body.  Since we have cut back on the feeds, we have also cut back on his diuretics, which has been awesome!  It would make sense that the more unnecessary fluids (feeds) that we give him, he is going to need more diuretics to get rid of it.  So we are finally back on track and getting rid of some of his meds.

Which leads me to the methadone and clonidine patch...Caelen has successfully weaned off of them.  YAY for Caelen!!!!  He is no longer on any narcotics.  I am so proud of him for handling the very long wean cycle, but he did it.  It's so nice to be done with methadone runs, lol!  He's so much more alert and awake and of course more playful.

My mom taught Caelen to use his feet in his little car and push himself along, and now he's all over the place.  We're going to bring mom back if for nothing else, than to keep teaching Caelen more things.  Apparently, he likes to do big things for her but not Martin and I, lol.  (I already warned mom that I was going to write this, so she's not offended.)  Here's a video of Caelen scooting along in his car.

He is making so much progress every week and Martin and I are so thrilled!  The biggest accomplishment is the oxygen free day, it makes life so much easier to not have the o2 lines everywhere and gives Caelen more freedom.  I've even taken Caelen into the grocery store, Target and Babies R Us, he looks just like a normal kid without all the lines!  Even though he isn't walking or talking or eating, he is making strides towards each goal every day.  He is getting P/T and O/T 4 days a week, and we've been on a waiting list for speech since December.  Pretty soon I'll be posting that he's standing and then walking.  But for now, we are just so grateful for the progress he has made so far and we know that more milestones are their way.  Baby steps are the name of the game, and we are blessed to count each step.

Babies R Us wore him out ;)

Love, Katye, Martin & Caelen

1 comment:

  1. Love it! The pictures and video are wonderful!! He's absolutely precious and I'm so glad he was able to reduce some meds. :)