27 November 2012

Pre-Op Done!

Bennett had his Pre-Op this morning.  We received a clean bill of health (other than tooth decay and rectal prolapse but we'll clear that up on Thursday)!

Bennett did a great job practicing for his X-ray, although the nurse came and got us before we did the real thing.  (Apparently, they schedule routine X-rays for new patients at the clinic but the nurse realized that, in our specific situation, it might not be necessary, which was later confirmed).

Bennett was SO brave during this appointment.  He was willing to do his X-ray on his own and willing to let the doctor touch him.  He even let the doctor look in his ears (first time ever without having to be held down)!

It's a beautiful thing when kids get big enough to understand more of what is going on.  Oliver is amazing at the doctor, now that he's five.  I see Bennett beginning to show the same ability to be a good little patient (even when he has a lot of reasons to be afraid).

I always try to be honest with Bennett: "this isn't going to hurt" or "this is probably going to hurt a little bit."  I want him to trust me.  The nice thing about developing language skills is he is able to communicate by words more and more.  Today, while he was in tears over having the blood pressure cup put on him, I said, "are you scared?"  He said, though his tears, "yes!"  It was so nice to be able to calm him down and just talk him through it.  I cannot express enough how wonderful this is.  After having been through doctor appointment after doctor appointment with a baby and toddler, I am just loving the big little kid stage!

After our X-ray (which turned out not to be), we met with one of the local Cystic Fibrosis doctors at Scott and White in Temple, who I like a lot.    We originally met Dr. S during our hospitalization last year at Scott and White.  I liked him then, so it was even easier to go in and speak with him today.  His job was just to get Bennett's vitals and give his OK that Bennett is healthy enough lung-wise to go into surgery.

The doctor was very happy to see how healthy Bennett is and said that he didn't have any worries at all about the impact of this surgery on Bennett's Cystic Fibrosis, nor did he have any worries about the impact of CF on his upcoming surgery.  He did, however, say that he was glad Bennett did not have dental work done in the clinic.  He agreed that Bennett's care, if it involves anesthesia, should typically be done in the hospital.  That was good to know.

Bennett's CF doctor from Children's also recommended a short dose of Augmentin (an antibiotic) after surgery to keep Bennett's staph from flaring up after the procedure.  So, we will take care of that on Thursday.

Before we left the clinic, the doctor asked a question that I thought was really interesting.  He said, in his Latino accent, "so, normally, we see rectal prolapse in children who are malnourished.  But Bennett is not malnourished, why is that?"

All of the sudden, I felt like a presenter at a CF forum or a doctor speaking with a medical student.  The CF doctor, even in his many years of experience, was genuinely asking me a question to which he didn't have an answer.

It doesn't come as a complete shock as I have been in this situation before.  Bennett's first diagnosis, meconium peritonitis, is also rare in kids with CF.  So, I have been asked about it as well.  His eating issues as a baby were also curious to doctors at times.  The reality is doctors often know most about the specific symptoms they have seen in their patients.  But sometimes, doctors who have not experienced a specific symptom or complication might not otherwise know about it.  I didn't always realize that doctors who are experts in their field may, in fact, have many more things to learn.

Over time, I have come to realize that I am a CF expert, in my own way.  I am an expert of my child's Cystic Fibrosis.  And since CF looks different in every child, I am an expert of Cystic Fibrosis in Bennett.  I have been at every appointment, hospitalization and test.  I'm often the first to recognize symptoms and tell the doctor something is wrong.  I appreciate those doctors who value my own expertise as his mother.

So, I explained how Bennett went months suffering with undiagnosed C.Diff. and how that caused him to push on his bowel so often and so hard that his rectum eventually severely prolapsed.  I explained how it later became a serious issue when his bowel became so stretched out and his sphincter muscle so loose that it caused the rectal prolapse to be chronic.  I also explained why the doctors are not able to fix his rectal prolapse by way of the abdomen.  Scar tissue from his original surgery at birth keeps them preferring to use the altimeier procedure (repairing the rectal prolapse through the anus) instead.  The doctor appreciated my insight.  It felt good to share our experience.

Now, we are off tomorrow for a minor outpatient procedure.  Bennett will have a barium enema tomorrow afternoon.  I'm just hoping I can keep him from eating anything after 7AM.  Ugh!


  1. Way to go, Bennett! You are growing so big and being so brave at the doctor.

    We will be thinking about you guys the next few days. Love to you ALL!!


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