25 January 2016

What a difference 24 hours makes!

It was really great to see our brave little guy again this morning!  Last night, I went home to Waco - to wash my hair, to shave my legs and to get a full night's uninterrupted rest.  Thanks to my sister who came in from Dallas to care for Oliver and Avonlea and to my hubby who stayed the night with Bennett, I was able to recharge just enough to come back for a few more days.

When I came this morning, I brought Oliver and Avonlea with me.  Brian and I learned early on through all of our surgeries and hospitalizations how vitally important it is for our whole family to be together for at least a short period every day - Bennett needs to see his siblings and his siblings needs to see him.  (I love this picture, above, by the way.  I had asked Brian to take a picture of Bennett and me.  Bennett insisted in putting his hand over my shoulder despite it was his IV hand.  Avonlea was standing next to the bed.  When Brian said, "say cheese," Avonlea turned right to the camera and said it with us.  Obviously, he couldn't possibly crop this little nugget from the picture. :))    

The reality was that last night, when Brian was on duty, was extremely difficult.  Bennett had been on morphine until yesterday afternoon when we began to realize he was having some sort of reaction.  Technically it wasn't an allergic reaction (because it's actually a known side effect of morphine) but it was definitely a reaction to the medication.  Bennett's body was so saturated with morphine that it took what seemed like forever for it to clear his system and stop making him itch.  The poor child looks like a cat took her claws to his face, arms and back.  Literally:

As a last resort, when the Benedryl still wasn't giving him relief, the surgical team decided to stop the Morphine's response using another powerful medicine and new pain reliever.  It wasn't until 5am that he was finally able to rest peacefully.  Once the itching stopped and the pain was suppressed with a new med, Bennett began to noticeably improve.

Around 8pm this evening, Bennett really began to come back to life.

Tonight, Bennett got the all clear on his diet.  He can now eat whatever he wants.  But, unfortunately, he isn't interested in food.  (Personally, that freaks me out because he is already underweight and we not eating for 4 days isn't going to help.  But I trust he will gain weight again once he is back at home.)  

I have asked the doctors to consider feeding him through his g-tube, even if he's not hungry.  I don't want to force him to eat but I also recognize that he has a poor appetite due to CF. I don't want that to slow down our going home.

Speaking of CF, we haven't been able to do chest percussion therapy because of his abdomen pain. I am planning to talk to Physical Therapy and Child Life tomorrow to see if we can get him up and moving.  That will help the residual gas and hopefully begin to get his oxygen saturation up.  His chest X-ray shows that he is vulnerable for a lung infection right now but not that he has one, which was reassuring to hear.

I will write more about how Oliver, Bennett's warrior brother, is doing in another blogpost.  But I thought I would share this picture of the two of them today.  It was really important for Oliver to see Bennett improving today.  Bennett feeds off his brothers support and confidence so it was great they spend some brief time together today.  Thank you to our friends who watched Oliver today after a friend's birthday party.  We are thankful for opportunities for Oliver to stay in touch with what is going on but also opportunities to be distracted.

Thank you to my sister, Brooklyn, for coming in this weekend to help us.  We know a lot of our family wish they could be here to help right now.  But we are thankful for and definitely feel their love and support from afar.

We have been told that in order to go home, we need to have a solid poop.  Since we had colon surgery, the doctors really need to have the confidence his GI tract is working appropriately.  We are expecting to go home Tuesday or after.

It's 1:23am and we have not slept yet.  We are settling in now to rest.  The surgical team will be waking us up for their rounds in about 4 hours.



  1. You ALL are amazing. I am glad Brooklyn could be with you and I sure your Mom would be there now if it weren't for all of the snow and cancelled flights. Love seeing the photos. They show the light and love in his room.

  2. Such a brave boy and family you have! <3 Prayers will continue--sending lots and lots of love.


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