12 August 2016

Sigmoidoscopy with Dilation - Numero Quatro

Yesterday morning was our fourth sigmoidoscopy with dilation procedure to address Bennett's gastroinestinal stricture.  Bennett did well and the procedure went better as expected.  

The GI doctor was able to open the stricture to 15mm (it was 6mm when we started) and seems to think some of the inflammation tissue may have "popped" or given way.  

This is an improvement from our last surgery where the doctor was concerned it was not opening up enough and I was reporting Bennett's symptoms in frequency and urge to go to the bathroom were not improved.  However, this new improvement has given us more confidence to steer away from surgery for a bit longer.

There's such a part of me that would prefer surgery, just so we can have one procedure and get it done.  But, complications surgery may be the reason we are hear in the first place.  So, it's best that we hold off putting Bennett back under surgery for as long as possible.

The plan, for now, is to do another procedure in 3-4 weeks. The doctor hopes that this next she can open his stricture to 18mm and to inject steriods in the area to manipulate the stricture inflammation to go down.  Then, we will wait 4-5 months and reevaluate.

Our time at the hospital has gone well.  Bennett was a little combatitive and winey when we first arrived at the hospital.  I recognized he was feel anxiety and anger about having to be here. I was too, frankly. So, I stopped him and said, "Bennett, I don't want to be here either.  This is terrible.  I hate every bit of it.  But I need you to be kind to me and I need to be kind to you.  Can we be nice to each other today?"  Bennett seemed to respond well, almost like my having acknowledged his feelings was enough to let it go.  I had to let my frustrations go too.  I could tell how stressed and irritated I was feeling when I was packing the night before and talking to Brian.  In fact, Bennett often throws his frustrations on me.  And I throw them on Brian.  I'm thankful each of us are willing to be gracious with each other during these times.  Bennett enjoyed his new toy again.  I really appreciated a sweet nurses's disposition.  Our morning turned around and we were able to be present in the moment.

Things started going even better when Daddy arrived at the hospital.  Childcare issues meant Brian had to arrive late and leave early.  But it always helps to have another adult in the mix.  There's always someone to talk to the doctor and someone to talk to the child.  There's always someone to stay with the patient and someone to run to the cafeteria.  There's someone to help calm the other adult.  It just helps having Daddy there.

Bennett woke up from his procedure ok but seemed he may have been hurting.  In recovery, I asked if the nurse could give him tylenol.  Bennett needed to go to the bathroom so Brian and I took him.  When we got back, the nurse had fentanyl to give him.  I knew it was a strong med but I didn't think much of it until we couldn't wake him up a short bit later.  The fentayl is a great pain reliever but it's also a sedative.  So, Bennett's waking up process took considerably longer this time.  Bennett was very loopy for a while which was quite humorous to us.

Our hospital stay has been good. This time, I printed out a paper of "requests" to give to the doctor who was admitting us - requests like "please give mom permission to do respiratory treatments" and "please make pancreatic enzyme medicine PRN (to give as needed)."  These are small requests but if they aren't in the chart, they can result in frustrations between myself and the staff.  Nurses and therapists have to play by the rules very carefully.  So, it's important to set the rules up correctly.  And to do so, it's important to have buy-in from the decision-maker, like an admitting doctor.

Thank you to our friend, Amy Van Vranken, Executive Director of the Cystic Fibrosis Chapter in Dallas for sending Bennett this "epic balloon" (as he calls it) and little set of build-a-robot toys. It was a super fun treat to receive. ❤️

One of the greatest disappointments about our next procedure (other than its number 5) is that Bennett is going to have to have a colonoscopy prep to prepare for it. That means eating only clear liquids for 24 hours and then having a full colon cleanout (which includes loads of Miralax and lots of potty time).  

I cannot even express the knot I already have in my stomach about this.  I know the doctor is only wanting to be able to be the most successful she can by requesting that we prep Bennett appropriately.  She feels badly about it too. But it doesn't change that I am super disappointed that we will have to make Bennett go through this kind of prep again.

Our procedure isn't until September so there's no sense in fretting about it now.  Once we get discharged (hopefully in another hour), we will head home and focus on something much more fun: Bennett's first day of 1st grade next week.  Pictures to come. :)

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