25 February 2017

Update on Bennett

I thought I'd share an update on our life since being home from the hospital.  We are all doing well.  Bennett is now over the flu. And so is Brian.  Thankfully, the rest of us have stayed well.

This past week, Bennett was able to visit his friends at school after an invitation from Bennett's teachers to visit at lunch.

The children seemed to delight in Bennett, which made him feel very loved.  Bennett enjoyed getting to show off his new haircut, a haircut I hoped would distract the children from noticing the colostomy bag under his shirt.

A mother of one of the children in his class said her daughter told her that seeing Bennett back at school "was just like normal.  It's like he didn't even have surgery."

Teachers and staff were equally excited to see Bennett, which made him feel very appreciated  There were lots of comments about how grown up and how tall he looked.  I'm not sure if it was the haircut that made him look that way or the fact that he had lost weight and looked skinnier than before.  Nonetheless, he blushed over the attention and appreciated the fact that so many people cared.

As his mama, it felt wonderful to watch Bennett experience such love.  I have been there to witness some of his hardest moments.  So, it is a gift to witness some of his most special moments.

It feels good to be home.  All things home feel good.  But, being home can be a bit of an illusion.  It can feel like since we're home, we should be jumping back in to life as before.  I'm having to accept that we just aren't there yet.

Avonlea, 3 years old, has regressed in her potty training.  It's easy to become frustrated with her over it.  But I honestly don't blame her little brain for forgetting to listen to her poop and pee signals.  I'm the only who, this week, bought something at Walgreens completely forgetting I had bought already bought the exact same item earlier in the day.  I'm also the one who went through the whole process of asking for a new prescription from our CF clinic, contacting a local DME company and getting insurance approval for a new compressor for Bennett's inhaled CF medications only to find it wasn't the compressor that was broken - it was that I had simply forgotten to replace all the pieces of his nebulizer cup in the right place causing it to not work right (note to self: that little middle piece is critical).

Our family's stress is still high.  We're slowly coming down from it all but I have to be patient with all of us, especially myself, right now.  It's ok to still feel like we're spinning.

We have been blessed to have had a number of local friends who brought us meals this week and others who have asked offers to help next week.  Far away friends have sent care packages and meals as they wished they could be near to help.  One very kind friend encouraged us to let her to babysit tonight so Brian and I could take care of our marriage, insisting she could be trained on caring for Bennett colostomy.  We immensely appreciate the love and support.  These things really have and do help a lot.

This week Brian and I, along with Bennett's school, made the decision to homeschool Bennett for the next 2 months until Bennett's colostomy is reversed.  While disappointing on a number of levels, this seems like the right thing to do, given all that he's gone through and given what having a colostomy at school would mean for him.  (Many children who have colostomies do go to school full time.  However, Bennett is not yet independent with his colostomy.)

The benefit of Bennett's staying at home from school is that Brian and I will have the opportunity to give him more tube feeds during the day and be more aggressive with his nutrition.  Bennett lost 5 pounds while in the hospital and now has a BMI of 12% (he needs to be at 50%).  So, while we are disappointed by how this surgery turned out and what it means for a new normal for us and for Bennett, we are leaning in to this new reality and recognizing it's opportunities.  As a former teacher, I will work with Bennett one-on-one in parts of his education he could use extra help on and, as his mother, I will help him to gain weight in a way he couldn't at school.  There is a blessing here.  But this certainly isn't the way we expected life to go.  Thankfully, it's just temporary.

We will start planning for Bennett's next surgery in March at our next appointment with the Surgeon and GI doctor.  We are going to meet to talk about how we can best prevent Bennett from having another ileus after his next surgery.  On April 3, Bennett will have a barium enema to make sure his bowels are ready for a reanastomosis/colostomy reversal.  If everything goes as planned, Bennett will have surgery the first week of April (exact date TBD).

Overall, Bennett is doing well so we are doing well.  But we are grateful for friends, family and coworkers who are particularly understanding with us right now as our new normal emerges.

1 comment :

  1. Keeping you all in prayer.... hugs to Bennett!
    Dianne fr NC


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