Never have I ever

'Never Have I Ever' is a drinking game I played in college.  The gist is you follow up that phrase with an action and if you have done the action you have to drink.

   Never have I ever gotten lost ..........drink
   Never have I ever been arrested.......drink
   Never have I ever thrown up in public.....drink

You get the idea.  As a mom, I have said a bunch of time, I never thought.  If I took this game from my college days and changed it around a bit, I would be face down on the bathroom floor.

Never did I ever think I would be so familiar with the hospital...........................drink
Never did I ever think I would l to worry about my child's fat intake.................drink
Never did I ever think I would potty train my kids at the same time..................drink
Never did I ever think I would have a medication schedule..............................drink
Never did I ever think I would carry around a medical resume.........................drink
Never did I ever think after all the hard work a G-tube would be needed........drink

Here's the thing about CHD, it impacts so much more than just the heart.  And sometimes that isn't always discussed when you get the diagnosis. I mean, I get why.  Not all kids are the same.  Some have their surgeries and encounter minimal other issues.  But kids like Lucy, that is just not the case.  A perfect example would be our latest hospital stay.  In those 100 days we saw at least seven specialties.

Cardiology
Respiratory
Nephrology
Infectious disease
Gastroenterology
ENT
Psychiatry
Radiology

 Last week we went back to the hospital for a swallow study, ENT evaluation and her bridle change.
The swallow study went really well.  It was so fun to watch Lucy interact with Jen.  She was goofy,  talkative and showed no signs of being scared.  Quite a difference from our hospital meetings.  Lucy got up in the special chair, next to the big camera and sampled the food that Jen "made".  For the study, a dye has to be put on all the food so it can be tracked through chewing and swallowing.  We sampled thin, nectar, puree and solid food.  She passed on everything as long as the volume was small.  We got approved to give nectar liquids in amounts of 2.5 to 5 mL at a time.  We are not on a liquid (amount) restriction since her diuretics are so high, but we are trying not to go overboard.  We aim for four to six ounces by mouth a day.  The ENT evaluation was a little more traumatic and Dr. Sherman had to put the scope up her nose to view her vocal cords.  She sat in my lap and I held her like a straight jacket, while the nurse held her head and Dr. Sherman placed the scope.  She screamed, maybe the loudest I have heard in awhile.  Lucy's vocal cords have healed a bit but  there is still some compensation from the left side to close them all the way.  At this time, no intervention was needed, but he stressed that the NJ tube is impacting all of it.  And then he said those dreaded words:  G tube.
Now, I'm not scared of the actual g-tube.  I have heard amazing things about kids getting them.  I think it's that is another surgery and another hospital stay.  But honestly the hardest part is that we worked SO SO HARD to get her eating, that to be back here talking about g-tubes is just another punch in the gut.  I was hopeful we would have some time to work on her eating before definitively deciding about the surgery, but my gut was telling me get prepared.

Fast forward to yesterday and our cardiology appointment.  We had a blood draw for labs and it only took me two months and five trips to remember the lidocaine for arm.  It didn't help much, so maybe it's not that big of deal that I haven't remembered.  Then an EKG and vitals.  Last we sat down with Dr. Husayni to discuss what has been happening over the last month.   Since our last appointment we have seen her physical strength increase along with her energy level, but her oral intake has decrease tremendously.  We are lucky that we have not seen her weight tank as that would mean an admittance.  And he finally said it, we need a GI evaluation so we can get an idea of what her digestive system is doing.  I asked what the probability of the G-tube was and his response was, she needs it.  My eyes get watery as I start to dread another hospital stay.
Me:  How long is the average stay
Dr. Husayni:  about 2-3 days
Me:  So Lucy at least a week
Dr.  Husayni:  You are veteran, you know how it goes
Me:  When?
Dr. Husayni:  We should do it this year.

And there you have it.  2017 can officially suck it!!!!  We will start with GI evaluation, then look to schedule the surgery.

While this news definitely overshadowed the good that has happened this month.  There is still good!  We have decreased some medications and stopped another one.  We have adjusted her feeding times.  Hooking her up at 4 pm was not working out because Lucy can't quite grasp that the feeding pole has to come with her when she gets up to move.  We started feeding her at nap time so that we could delay the night feed until she went to bed.  The other change we made was moving up her night dose of diuretics to 4 pm, so that there were no more accidents and I don't have to wake her up to change her diaper 3 times overnight.  BUT what I love is that Lucy loves Dr. Husayni.  While we were getting vitals he walked by and she got so excited she made him come in for a hug.  Then she helped him listen to her.  When we were finished, she asked if he would walk us out.  I hope this sweet relationship grows stronger as he helps to guide her through this journey.

My biggest fear with this surgery is how it will impact Lucy's mental state.  She still has anxiety when I leave and many times at night she asks "you're not gonna leave".  We try really hard to ease her fears and to explain everything that is happening but sometimes that is just not enough.  While she is smart enough to understand she still get scared.  I truly hope I will be able to say, this was the easiest one yet.