G tube here we come

Here we go, prepping for another surgery, another hospital stay and another chance to showcase Lucy's strength.  Surgery is officially scheduled for next Monday, the 27th.  Deep breath.  These past couple weeks we have been meeting with some new doctors and discussing plans for this surgery. 

First we met with Dr. Smith (GI doctor) to discuss her history, talk about her feeding schedule and what issues we had with her stomach during the last hospital stay.  The evaluation was minimally invasive as the most he did was take a look at her belly and listen.  We discussed GJ tube versus G tube and the complications that come along with surgery.  Then ended the evaluation with a follow up phone call after some discussions with cardiology.

Two days later we had our pre-op appointment with Dr. Chokshi (pediatric surgeon).  He came recommended and at first meeting, I could tell I was going to like him.  Megan (RN for general surgery) was a familiar face from back in 2014 when we spent two weeks in the step down unit.  Their demeanor through our appointment put me at ease as we discussed our surgery options.  The big theme I was getting from both appointments is that nobody wants Lucy to have the GJ tube.  It comes with many complications post-op and can extend surgery time.  But there are also reservations regarding the G tube:  her throwing up, she hasn't been fed to her stomach since May and her stomach's motility.  So, what happens?  We go for an immediate upper GI.  Radiology was able to squeeze us in immediately.  Thanks a bunch, wink, wink.  Remember last post when I said the ENT evaluation was bad.  THAT.  WAS.  NOTHING!

The upper GI consists of drinking about 2 ounces of Barium, then filming how the liquid moves through the digestive tract.  From her swallow study, I knew she wouldn't be able to drink it (because of the taste she immediately threw it up), which meant we would have to place an NG tube to get the barium to her stomach.  She flailed and screamed and cried her eyes out and it was really hard to watch her go through it.  I try hard to never cry while it's happening, to talk her through it, stay calm and reassure her that it will only be for a little bit.  I've tried to adopt a saying 'we can do anything for just a little bit'.  I am not sure if it has helped, but I will say, Lucy always ALWAYS bounces back so quickly.  Most of the time I do too, honestly most of my tears come after the fact, talking about it (or recapping here).

The results of the upper GI were good.  They showed her stomach emptied rather quickly and gave Dr. Chokshi some data to discuss options.  Last Thursday Megan called to tell me everyone wanted to do a NG feeding trial to see what her stomach can handle.

Our first option was a week trial with the NG tube.   Absolutely not.  If she was not able to handle it and threw up most of what we fed her, that would leave us with a week without food heading into surgery.

Next option, admit to the hospital on Friday (11/17), pull NJ, place NG and trial feeds over the weekend.  If feeds go well, go home with NG tube.  If they do not, place the NJ on Monday and go home.  Absolutely not.  Placing the NJ tube was painful.  Her current NJ tube took three hours to place.  When we pull the NJ tube, we are pulling it for the last time.

Last option, admit this Friday (11/24), NG trial over the weekend and go to surgery Monday morning. I asked if we could do this at home.  If she was not able to handle it, I would bring her in immediately for admit so we could get her fluids before surgery.  They obliged.

I am thankful to have a voice for Lucy and that our doctors take to heart what we talk about.

This Thursday we will also be thankful for all we have overcome and Friday will start our next journey.  Friday morning we will give Lucy's morning meds, then pull her NJ tube.  We'll give her the day to enjoy and then early evening we will place the NG tube and start feeds overnight.  I am starting with a lower volume to test her and then will slowly increase over the course of the weekend.  Wish us luck!

Our specific prayer requests are
~Our home trial works and we do not have to be admitted early for IV fluids.
~The trial determines that we can move forward with the less risky G tube.
~Surgery and recovery is as close to standard as possible.
~An open bed in the PSHU, because of Lucy's anxiety, I'd like her to be in a familiar place.  If no beds are available, it would mean a bed in the PICU (i.e. new faces)