02 July 2016

Sigmoidoscopy with Dilation - Numero Dos

Thursday morning, Bennett had his second of multiple procedures to address an intestinal stricture.

Ever played Jenga?  That's how these procedures feel like to me.  Bennett goes under anesthesia, they dilate his stricture, he wakes up and we patiently wait 24 hours to see if an infection emerges to determine whether or not surgery will be required.

Each time we go in to the procedure, each time a Jenga piece is pulled, our stomach drops as we wait to see what will happen.  Because colon perforation in these situations are not uncommon, there is a cautiousness involved. This is why Bennett is being kept overnight at the hospital for observation each time.

Each time things goes well, each time the Jenga game doesn't come crumbling down, there is cause for celebration and a hope that next time will go just as smoothly.

Things went perfectly this time, just as before!  The GI doctor (not pictured above) was able to dilate the stricture from 10mm to 12mm.  The stricture is now double the size it was when we first found it 6 weeks ago during a colonoscopy.

In theory, Bennett's intestines should work more efficiently now, so we hope this will really help Bennett feel more comfortable and not have such an urgency to go to the bathroom.  We should know this week if it worked.

The GI doc hopes we can eventually move the stricture from 10mm to 18mm or more.  She suggests that we try this another 2 or 3 more times, maybe even consider placing a stint to help keep it open.

Then, she'd like to wait 4-6 weeks  to see how things go.  If his symptoms don't improve or get worse, we'll go back in.  If all goes well, we will reconsider going in again in 4-6 months.  The goal is to improve Bennett's quality of life without having to go through invasive surgery.

The GI doctor thinks that after a few more procedures, we might be able to stop having to stay in the hospital overnight.

Our next procedure is planned for Thursday, July 21.

One thing I learned this time is that Bennett does not seem to be having pain during and after these procedures.  The anesthesiologist, whose job is to keep him comfortable during surgery, told me he was surprised that Bennett's heart rate did not go up during the procedure, indicating that Bennett does not feel the stretching of the stricture.  We think it's because the stricture is likely high enough in the bowel where there are no pain sensors.

Not needing a lot of pain meds makes recovery significantly easier. Pain medications can make kids feel nauseous or irritable when they wake up.  So, his not needing much pain med means that waking up from surgery is relatively easy and feeling back to normal happens relatively quickly.

The other thing I learned about his procedures is the anesthesiologists are regularly choosing not to put breathing tubes down his throat.  Although they use something that keeps his airway open, his not having a tube down his throat helps to keep from the spread of an infection to his lungs and helps him to not wake up with a sore throat.

Our hospitalization went really well again, even better than last time since I was able to ask for small some accommodations (mainly no 2AM trash take-out).

Medical experiences with a chronically ill child is like one massive a brain teaser.  It takes a ton of focus, some knowledge and a bit of skill to navigate. Every time I go through a hospitalization, surgery or clinic visit, I try to learn everything I can to use it for the next experience.

Out of curiosity, during meal delivery time, I asked the food worker at the hospital: "Why are you delivering Bennett's food on paper tray with a styrofoam plate when last time we were hospitalized for the same reason our food was delivered on a hard plastic tray with a ceramic plate?"

Bless her heart, the poor food worker started to stutter having no idea how to answer me.  A nurse piped up behind her and explained that she thought the reason we didn't get a hard plastic tray this time was probably because we are on isolation.  Paper trays can be thrown away minimizing germs.  Of course, we were on isolation last time so who knows.  But I am so glad my natural curiosity allowed me to stumble upon the realization that there was another option.

Now having learned paper trays are an option, I will request them from the beginning and hopefully minimize Bennett's exposure to hospital germs.  It's amazing to me how important it is to stay curious as a CF mom.

"Why do you put the gowns on inside the room instead of outside the room?"
"Why are we doing blood work again?"
"Who is the one who makes the decision in this situation?"
"Why do use this type of intervention instead of that intervention?"

I'm often asking, not because I yet have an opinion but because I'd like to be better informed before I do. :)

"Is there anything else I can do for ya'll," the Medical Resident asked me while making evening rounds Thursday night.
"Yes," I said, "can you tell me how we can discharged earlier than later tomorrow morning?"
The Medical Resident responded, "oh, I'd be happy to put you first on the list to be seen by the Attending Doctor tomorrow morning so you can get out earlier if you'd like."
"Bingo," I thought. "That's what I will request from now on."

This morning, instead of leaving the hospital around noon like we had to do last time, we were out the door by 9:30am!

A funny situation that happened during this hospitalization was when is our male nurse randomly asked me, "Are you the mom who likes to do her own breathing treatments?"

I answered with hesitation and a slight grin, "yes, I do like to do Bennett's breathing treatments. But, why'd you ask if I was 'the mom'?" 

The nurse smiled and said the respiratory therapist had asked him that specific question.  

When the respiratory therapist came to our room a bit later, I told him about the exchange I had had with the nurse.  We laughed together.  He said, "when I saw your son, I remembered you.  He pointed to the other side of the hospital floor,  "you used to be over there."  

I learned pretty early on that while hospital respiratory therapists will gladly take off the burden of the parent having to do treatments while in the hospital, Bennett responds best to my doing his treatments, mainly because my doing them seems more like our home routine.

Nonetheless, this respiratory therapist had spent no more than a total of 5 minutes with us last time.  But he apparently remembered me well.  A confession of a CF mom: being considered "memorable" for carrying for one's son's lung hygiene is a moment of which to be proud. :)

While admitted, two sweet women from Child Life came knocking on the door with toys in their hands.  

The floor had reopened and all the children had been transferred back to the main hospital on the very day of Bennett's admission.  Because of this, the hospital Child Life staff was giving toys to all the children on the floor, including the kids who had just been admitted that day.  

We have *so* many toys at home that I almost suggested that we not accept the toys he was being offered.  But decided to take off my normal-mama hat and put on my hospital-mama hat, reasoning that anything that makes Bennett's hospital experience a positive one can't be a bad thing.  

My normal-mama self was willing to give in to my hospital-mama self on the condition that I commit to returning next time with new toys that we can donate to the hospital for them to give to other sick boys and girls to enjoy.  

I cannot even communicate just how meaningful little treats like this can be for families suck in the hospital.  I'm not sure if it's the surprise, the kindness or the newness.  But treats and crafts for kids during hospitalizations are really delightful.  

I look forward to contributing to this delightfulness in other families as a new part of our hospital routine.

And that was that!  Everything went off without a hitch!  Bennett was a rockstar this time around.  He said not even one tear!  

I am not going to lie.  I hate hate hate having to do all this stuff.  This is like our 16th overnight hospital stay this year alone.  I hate the interruption CF causes to our lives.  

I have so many other things like I'd like to spent my time and money on, rather than dealing with hospitals, doctor appointments and treatments.  

But I also recognize that God has provided us so many blessings to fill in the gaps between the frustrating moments.  

As we end this procedure and gear up in a few weeks for another, I am focused on taking deep breaths, recognizing the goodness around us and remembering that this little boy is well worth it all:

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