My Boy Is Back!

This silly boy has turned a corner! His color is so much better, he has a little energy, and for the first time in over a month he is playing with his toys.  Last week, I was a nervous wreck after seeing him struggle and be so sick for the past month. His RSV symptoms {cough, runny nose} only lasted one week, but it took a toll on his lungs and sats for longer.

 By about Wednesday afternoon, he started telling he he was hungry often throughout the day.  I gtube feed him a blended diet of about six ounces every 90 minutes all day long.  He has never tolerated more than the 6oz volume and would usually puke it up immediately afterwards.  I was giving him snacks like crazy towards the end of last week.. cashews, carrots, beef jerky, almonds.. but he would only eat one and say "I am so full!"  Then 30 minutes later, ask for more.  On Friday afternoon, I decided I would try to increase his tube feeds again and started with 7oz... he did great.  I bumped it up to 8oz by his last feed of the day and I already saw a difference in his energy.  By Saturday afternoon, he was digging in his toy boxes, wanted to wrestle, he had his binoculars out to go on an adventure and my boy wanted to PLAY!!!  This was the first time he wanted to play in over a month.  It was wonderful!!

On Saturday evening, I was getting ready to meet a few friends for dinner and I told Kam to start the grill so I could make them some burgers before I left.  Owen said "I don't want burgers.. I want chinese."  He made it a point that if I was going out, then he was going to have take out!  So I ran and picked up some Chinese for my clan before heading out.  How could I say no?

On Sunday, he woke up before 7am ready to play.  My house was a disaster filled with toys everywhere!  It was so great!  I didn't even bother cleaning up for most the day because I was just so happy that he was back to himself.  He still wears out easily, so we stopped and watched a movie, took a short nap and played some video games, but it was a HUGE improvement.

Before we went to Grammy K's new house for dinner, Daddy cut Owen's shaggy hair and he looks so good.  His color is better and he just looks like he feels better.

In conclusion.. did his body simply need more calories to help recovery from the RSV?  He was already getting about 1800-2000/day via Gtube, but apparently he needs more.  He has gained weight steadily on his old diet.. so I can only imagine he's going to grow like crazy with 500 extra calories per day.  Maybe it's a growth spurt??  I don't know.  I'm glad we'll be at Stanford on the 14th to do a full workup. 

I called LPCH this morning to give them a little update and to find out when he'll be reactivated on the transplant list.  Can you believe it's been FOUR weeks??  Hopefully he'll be Active on the list by tomorrow afternoon!!  I hope so.  They have a conference in the morning and will discuss it.  I also requested a consult with the nutritionist and a full set of labs to be done at his next IVIG treatment on the 18th.

I am so glad our boy is feeling more like himself.  Now that I see him feeling better, I realize how down and out he was.  Scary!  He's still moody, he's still tired, he's still blue.. but SO much better than he was.

Kam has only one more week til Spring Break... SO EXCITED!!!