Time for a New Tube

Shaun:  We had a little scare last night as Charlie said he was feeling chilled and had a headache.  The last time that happened we had a 4 day stay in the hospital with C-Diff.  Fortunately, last night ended differently – no fever and he ended up sleeping soundly.  

Today we woke up to 10 inches of snow in Farmington.  Cotton ball snowflakes fell throughout the morning covering the landscape with the promise of a white Christmas. 

Physical therapy was at 10:00.  The therapist was happy with Charlie’s progress.  He’s moving so well, and his range of motion has greatly increased.  His strength and energy is twice what it was a week ago.  To me it seems that this last weekend at home was worth two weeks of physical therapy.   

After P.T. We rushed to Primary Children’s to get Charlie’s nasogastric tube replaced.  After a month or so, they get a little clogged.  They had the ear-nose and throat (ENT) doctor change his tube again because of all the surgery he has had in his head.  Unlike last time, all went smoothly this go round. After an x-ray to confirm proper placement of the tube, we rushed off to the Hunstman for radiation.  

The ENT resident let Brendan put the scope up his nose -- just to see what it felt like.

An x-ray to check the NG tube placement.

All went quickly today and we were soon home to see the second half of the USU/Akron bowl game.   Charlie wore his USU regalia and cheered hard - to no avail.  The Aggies lost a close one.  Oh well, next year . . .  The silver lining was I snuck in a whole bottle of Ensure through his feeding tube while he was busy watching the game.  He held most of it down.  Having gained 1.5 pounds over the weekend, I’m anxious to see how much more we can get on him before the next round of chemo.  

After dinner, Charlie enjoyed a game of "Life" with Landon and his cousins.  Charlie has really enjoyed having Landon here with him this week, and Landon has been a great help shoveling snow, fetching tissues and barf bags, and general gofering.  

Kerry:  On the home front today, we were missing Shaun.  We woke up to lots of new snow and I was on the phone with Shaun, telling him how I wished he'd taught me how to plow snow with the tractor when our neighbor, Shane Haviland, drove down my driveway with his tractor, pushing snow all the way.  Tears of gratitude fell immediately and kept falling every time I drove in or out of my cleared driveway.

It was definitely a snowman-building day!

All day today the kids needed their dad.  For their homemade gift projects they needed a piece of wood cut, they needed to know where his supply of shea butter was (he's the soap maker at our house), they needed his help with some art supplies.  I was feeling pretty helpless myself (refer to above incident with snow removal).  Fortunately, when I was feeling like I should be with Brendan to keep dad home, the kids told me that it's the same when I'm gone and he's here.  Then everyone needs mom. . .  It's good to feel needed.  Things definitely work better as a team.  We're learning a lot!