What a weekend!

Highlights:
We had fun dancing at Uncle David and Aunt Rachel's wedding reception!
* Nathan was discharged from the PICU and sent to a normal floor. 

* Because of Nathan's being discharged and being more stable, Jonny, Madison and myself were all able to be at my younger brother's wedding last Sunday!  Jonny was the officiant and Madison and I were in it :)  What a truly joyous occasion!

* Jonny's mom came in from MD to be with Nathan while we were gone and several friends took turns staying the nights at the hospital so she could rest and be able to engage during the day.  We are so, SO thankful for those sacrifices that enabled us to be at the wedding.





The plan:
At this point, everyone is working towards our being able to take Nathan home on Sunday!!! 

*We will most likely be bringing him home on a feeding tube for a few weeks- still hoping for a few more conversations and possibly tests about this.  The type of feeding tube Nathan needs is a "continuous drip" which means he has to be connected to it for 20/24 hours.  As you can imagine, this is pretty limiting to his/our mobility, even around the house.  We would love for him NOT to have to come home this way - but that might just be what we have to do and we will still be thankful to be home. 

*A surgery of some kind to correct Nathan's digestive troubles now seems to be inevitable.  In a few weeks, after his lungs get a little stronger, Nathan will have another endoscopy and from there we will determine what the best procedure will be and get that set up.  The doctors are all in agreement that this digestive stuff needs to get taken care of soon-ish so that we can avoid jeopardizing the timeline of his first round of Apert related surgeries which are tentatively scheduled for July, October and next January. 

On our way to Texas!
A boy and his Mum Mum
If the last 4 months have taught us anything, they have taught us to hold plans loosely.  And I mean loooooossely.  Every plan.  Every single one of them.  That being said, it's hard not to get excited about the prospect of being home soon! :)

Comments

  1. UnknownMarch 6, 2014 at 1:30 PM

    We are so grateful for prayers being answered. "Mum Mum" looks great. Continued prayers for all of you.

    ReplyDelete

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