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Showing posts from April, 2014

PICU Happenings

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We'll start this post with a Pop Quiz (blame it on the teacher in me...) No news for a few days means: A) There is no "significant" medical update B) Days when the waiting feels long and hard are not the best days to update a public forum C) The days have been unbelievably full D) All of the above Correct Answer:  D Nathan is actually not showing any progress in the right direction since he was taken off the ventilator last Wed.  In fact, he has been teeter-tottering as to whether or not he needs to be put back on.  As of yesterday treatments and efforts to trouble shoot why he is still working so hard to breath even with significant oxygen support were really ramped up. We actually haven't even been able to do the study that will give us an indicator of how successful the digestive surgery was because they are unable to conduct the study on the type and amount of oxygen support Nathan is currently receiving.  We came to the hospital to address an eati

Staring Contest...

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Jonny here this time...First of all thank you so much for joining us in this journey!  That you'd read updates, pray with us for our little man, and constantly send encouraging notes amazes us.  We're so thankful for the support! Quick update on today: we are thankful to God that Nathan took a step in the right direction today! He came off the ventilator and is breathing on his own again! As you can see from the picture, my beautiful wife got to hold her son again! Words fail to capture the beauty of such a moment. And he was quite mesmerized as well!  Probably still a couple weeks in the hospital to recover from all the surgery.  But right now we're  celebrating today's big progress!  Please thank God with us! "Always giving thanks in all things!" - Eph 5:20

My Big Day

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Dear Diary, Turns out today was a pretty big deal.  Which kind of makes sense since Mom has been a bit "on edge" lately, if you know what I mean...  She went on a cleaning frenzy this weekend (nervous energy) and I'm pretty sure I saw tears in her eyes when she was kissing Maddie good night on Saturday night.  Speaking of Madison - I miss her.  We dropped her off at some friend's house last night (Sunday) so she could stay there and play with them until Mum-Mum gets in town on Tuesday.  She got really excited when we got to their house and started to clap and say "yay" so I know she's having fun but it's still kind of weird not to hear her giggling or have her give me kisses. Dad woke me up at 5:55am today and stuck that long skinny tube down my nose to suction me out.  Worst alarm clock ever.  Then I did my nebulizer treatement and we were in the car by 6:15 heading to the hospital.  I don't remember a whole lot after that...  I was starti

Update Time

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Family Walk = Simple Pleasure :) Believe it or not I have started three different updates since the last post.  However, things have been a bit back-and-forth feeling about Nathan's last appointments and digestive troubles so I have refrained from actually posting anything. But, lots of you have been asking and we had a final conversation with Nathan's pediatric surgeon here yesterday - so here goes... Nathan will be headed back into the hospital for surgery early next Monday morning .  The results of his biopsy along with his endoscopy has led to the conclusion that the problem he has been having for the last almost six months hasn't gone away and won't improve over time.  So, Monday morning they are going to try to fix that.  There are actually 4 procedures that are possibilities at this point and the surgeon won't really know which one will be the most successful for Nathan until he can "get in there."  While they are doing that, the