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Update on Bennett

Sunday, January 5, 2014

I haven't posted specifically on Bennett's health in a while.  This is partly because raising a 6 year old, 4 year old and an infant has limited my time on the computer so I haven't been blogging about much recently. :)  But, more than anything, it's because Bennett's Cystic Fibrosis has mainly been staying "in control."

Bennett continues to do his treatments religiously (Christmas and New Year's days were no vacations from treatments.)  We rarely miss a treatment...and usually when he do it's because we've unwittingly gotten out of our normal schedule.

But, tonight, I thought I'd share about a few changes going on with Bennett over the last few months with regards to his CF:

The first change we've seen has been one we have made.  At the recommendation of his CF nutritionist, we decided to change the formula Bennett is taking via his feeding tube at night.  

Since he was just a few months old, Bennett has been supplemented with Elecare 30-calorie formula via a feeding bag at night to help him continue to gain weight.  With regard to eating by mouth, it has been a long road but he has finally emerged from a baby who hardly ate by mouth to a child who eats fairly typical of any 4 year old.  (His favorite foods are chicken nuggets, peanut butter and macaroni and cheese.)

But while Bennett is consuming more food by mouth than ever before, it is still not enough to keep his weight up (and therefore his body healthy) without supplementation.  In fact, even supplementation has not been working as effective as we need it to.  So, about 3 months ago, at our last CF Clinic appointment, we decided to change his formula from 30-calorie/ounce Elecare formula to 45 calorie/ounce Peptamin Junior formula.

It has taken us a while to get the formula figured out.  We had to change durable medical equipment companies and work everything out with insurance but finally Bennett is now on this new formula.  However, in the process, we fell out of the habit of "putting him on the pump" each night so we are working ourselves back in to that habit.  Consistency is the most important part of successfully managing a chronic illness.  Without consistency/routine, there is no way one could deal with as many medicines and treatments as we do.

The second "change" (or maybe lack thereof) we have seen with Bennett most recently is his continued struggle to potty train.  When I brought this issue up with our CF doctor last visit, she recommended that we visit with the GI doctor at Children's hospital in Dallas, if we don't see any natural improvement before our next appointment.  She also recommended that we work with child therapist that works with children with special needs.

Although our CF doctor said that Bennett is not necessarily "behind" with potty training, Brian and I are growing weary of having to buy and change pull-ups multiple times a day for a child who we feel "should" be able to go to the bathroom. (Bennett turned 4 at the end of September).

Thankfully, our CF doctor was really wonderful and compassionate when she explained the myriads reasons Bennett for why he is not potty trained right now - all reasons having to do with complications with Cystic Fibrosis (loose stools from a digestive system that doesn't work correctly, complications from past surgeries on his rectum having to do with rectal prolapse and regularly being forced-fed at night through a gastric tube)...so I am able to talk myself through my frustration, reminding myself all those reasons, when part of me feels exasperated that Bennett is regularly going to the bathroom in his pull-up, rather than on the potty.

Cystic Fibrosis continues to teach me that Bennett is on his own schedule for things and I must love him and accept him exactly where he is.  I have to remind myself I cannot expect him to act like "most kids" in every situation because his body has different needs.  But I definitely struggle with my own desire to see him gain independence with his bowels and using the bathroom.  I want him to do it because its easier, cleaner...and I stress about the impact his not being able to do so will have on him emotionally as he will be in Pre-K next year.

I just keep having to remind myself that this behavior is not by choice, his body doesn't work right...and that he wants more than anything to please us, he just can't right now.

I am very hopeful that help will arrive soon in the form of a GI doctor who is used to these issues and possibly a therapist who can break down the process in smaller steps so we can begin to have some success.  We will meet with the GI doctor at the end of this month.

Thankfully, Bennett has a wonderful teacher at school who works over and over again to help him master potty training.  I know it will eventually happen...but I'd like for it to happen really really soon.

The third change we have seen in Bennett is that after recently being exposed to the flu, he has developed some really nasty mucus and a runny nose that won't go away.  Thankfully, it takes no more than a phone call to our CF Clinic to get some antibiotics to address the issue.  The nurse agreed that this happens all the time.  She said, "we often see that any small change that happens to the CF body (such as exposure to a virus) can bring about an infection, because the mucus from the virus builds up bacteria and CFers can't get rid of it."

I was very pleased to be reminded how quickly I could get Bennett on medicine to hopefully clear up this infection.  Our CF Clinic is as vigilant and proactive as I like to be, which I very much appreciate.  They gave us a 14 day supply of antibiotics and instructed us to increase his breathing treatments to 3-4 per day.

But I was a little surprised by how quickly a virus can turn in to a nasty infection.  I've noticed more recently just how sickly Bennett is looking right now.  It's probably a combination of needing to gain weight and his being sick with this infection.  But it never leaves me how vulnerable Bennett's body is to infection and how even though treatments give us small reprieves from the disease, we can never ever pretend he isn't sick.  It's right in those moments of serene comfortability that that dumb Cystic Fibrosis disease finds a way to get a foothold.

Bennett is doing well.  He has had two of the best years of his life these last two years.  But he still struggles, even if in less obvious ways.  We are just trying to keep him well until that cure comes along.

2 Responses to “Update on Bennett”

  1. Glad he's doing so well! I'm also glad to hear that there may be physiological reasons why it's so darn hard to potty train my 3year old! He was doing pretty well and then we had a small partial intestinal blockage so he was on heavy laxative dosages for a month and we have had a hard time getting him back to going on the potty ever since! Sometimes I feel like other people are judge-y that he's not potty trained yet, so it's a relief to know I'm not the only one :)

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  2. I love reading your blog and keeping up with your family. You are such a great mom!

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