Wednesday Morning, Gage's Turn to Go to The Gym

For 9 1/2 months, Gage went with Lindsey to her physical therapy.  He always wanted to play with the stuff she was doing at the gym.  He was very excited when it was his turn yesterday.  He participated really well, so at the end, they put him on a bike and let him ride it around the 3rd floor.  He was more than happy to make his 3 laps on the bike.  That was probably the funnest part of his day.  He wanted to go again in the evening, but was very disappointed to find that PT was only once a day.

He had a bout of nausea during the day, but was able to attend the afternoon session of school, after a good nap and zofran for nausea.  His appetite hasn't been as robust as it was after his surgery, but they don't seem concerned. He still get his feeds during the night, which is a relief to know he is still getting his calories.

They tried to cut his fluid down to help get his chest tube drainage down so he can get it out.  However, every time they dry him out his VAD doesn't flow as well.  Last night he had 3 'suction events' which means there is not enough blood coming down the line for the pump.   It is a delicate balance between chest tube drainage and good blood flow for the HeartWare.  His chest tube put out 80 mL over the last 24 hours.  That is the least amount it has put out EVER.  However, this morning when he woke up and got out of bed he dumped 50 ml in one shot.  So, we are not to the point of pulling it yet, but hopefully closer.

To name the lines we would LOVE to get rid of; 1) chest tube, 2) picc line with only heparin running through it,  and 3) one IV to use for other medicine.  The picc line will come out as he transitions from the heparin to coumadin, which could be in the next couple days.  Slow but steady, he will get there.  He really is doing great.

This morning we were walking to school, and he said, "Mom, I am just very frustrated."  Thinking he was going to share something deep, I encouraged him to explain his heart felt frustration.  He replied, "I just don't understand why I have to go to school."  I told him he didn't want to be lazy and sit in his room all day watching movies?  Then I decided I didn't want to hear the answer to that.  He is doing great!

Plenty of snow and cold back home.  Jason and the kids are doing good.  We are gearing up for kids to go to school in Calif starting January 5. Megan will be playing basketball in Calif. Tough adjustment for her to leave the NP team, but she gets it and understands the big picture.  Lindsey will be going to Jordan Middle School. That will be a BIG eye opener for her.  Sierra is excited to to to  PALY, the high school in Palo Alto, and meet new friends.

This was a bubble that they put over 'The Man of Steel'.  It counts the amount of calories his body needs.  It is more accurate than guessing by his weight.  Not sure how it works.  He wasn't crazy about it when he first saw it and had a slight panic attack (who wouldn't). His Grandma Bingham would rather die than be put into something like this.

Gages turn at the gym.

 He like the new mask, except it was PINK

A video of Gage's bike ride.

Gage received BOY covers for his filters for his mask.  So, he will now wear it, since it isn't a "pink" mask.

Our dear friends Sondra and Nori Zenger came and sat with Gage while I ran to the store.  They brought him this AWESOME Ninja Turtle jacket.  He loves it.  Thank you Zengers!!

A full view of the hot rod bike.  Definitely an upgrade from the Lindsey days.

We are getting trained on the HeartWare devise. This is a page from the manual.  How's that for a nice warm fuzzy!