Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Monday, September 9, 2013

T+47 Home at last

Well it was a long 12 days but we are finally back home!  On a good note, It did give me a chance to catch up some chic flics!  Peyton and Grandma arrived last Sunday and brought some much needed smiles.  Coleson just lights up when she's around.  Over the past week we were just waiting for Coleson to turn the corner.  He continued to get aerosol treatments and suction isn't ever 4 hrs. Round the clock.  We thought we'd be going home by Friday but he just wasn't holding his oxygen overnight (dropping into the low 80s) relying on blow by air.  They needed to ensure he could hold his own before releasing him.  Finally last night he did.  He dropped this morning but was able to bring it back up on his own.  So now we have 3xs daily nebulizer treatments added to our repertoire!  However we did come off TPN last week so that is a good trade.  His G-Tube rate is 35mls/hr x24 hrs.  He has also eaten a few things over the past few days like French fries, apple slices and juice.  
I think Coleson knows he has to wear his mask now as he didn't fight it all all today or yesterday when we went down for X-rays.  

Peyton and I had some much needed mommy/daughter time this past weekend.  We went to my friend Nicole's cabin in Wisconsin on Saturday and went to a Hopekids carnival at U of Minn on Sunday.  All the gopher athletes worked the event.  Peyton bounced on all different bounce houses, rode ponies, raced cars and met "Goldy the Gopher".  She is glad to be back at Old McDonalds! We started Gymnastics tonight.  Something "Normal" for a change.  

We are over half way done with our stay (hopefully).  We are looking forward to some visitors over the next few weeks.  Rachel's friends are coming next week, grandma and her sisters are coming as well.  Also one of me best friends, Christina, and her daughter are coming late next week.  We also will be saying goodbye to our next door neighbors and their Hurler daughter.  We will be the only Hurler family at the RMH house.

It is the start of flu season so we have to be even more careful.  Anyone who plans on seeing Coleson on thene t year has to get a flu shot.  It's doctors orders.   Another Hurler family who was here in the spring unfortunately did not get to bring their daughter home with them as she caught the flu and could not fight it.   My "Murse" duties call..he's gotten sick 5 times since being home already!