This year

This year has been the hardest yet.  I don't say that lightly either.  I know the first year of Lucy life was hard and it was littered with a lot of 'downs', but the difference is, at the time we didn't know anything else.  We didn't have time at home with Lucy, she didn't have the personality she has developed over the last three years and she didn't have a little brother.  This year has dragged us through the mud.  I sometimes wonder if she will ever be that person she was before this surgery.  I see flashes of her old self, but they are so quickly replaced by tears when I tell her she can't have water or she has to wait x amount of minutes before her next toothbrush dip or we need to do a finger prick to test her coagulation levels.  Yes, that's right.....we got our INR machine, so I have the pleasure of testing her myself.

If you didn't hear, or are not on Facebook, we were back in the hospital for another visit.   It was luckily a short stay and we made it home for Christmas, but it was just another reminder that although we are home, Lucy remains sick and fragile.

A week before Christmas, Lucy woke up in the morning and her mouth was all bloody, her lips were cracked and so dry.  We consulted with her cardiologist and decided to drop her diuretics on Tuesday knowing that we had an appointment on Friday to see Dr. Husayni.  It's no secret that she is on a lot of diuretics and because of the aspiration pneumonia that kept us in the hospital during her G tube surgery, she has been very limited in her oral intake.  Couple that with the decrease in her feeds because of her vomiting and she was super dry.  Wednesday and Thursday she wasn't herself, coughing a lot and more tired than normal.  Friday morning we packed up and headed to the hospital for her appointment.  She looked worse for wear.  We started with an echo to look at heart function and check for effusions.  Unfortunately, we could not see much fluid, so an x ray was ordered and it looked bad.  On all accounts we should have been admitted, but given it was a couple days before Christmas, we thought going back up on her dose of bumex (diuretic) would hopefully clear everything up.   As a precaution, the intensivist that was on over the weekend came down to look at Lucy.  It gave them a baseline.  We left and I was to send a picture of Lucy the following morning for them to review.  We didn't even make it to the morning.  Around 5:30 pm Lucy was still not herself, so we put on the pulse ox and her saturations were in the low 60's.  I immediately called the PSHU to let them know.  We were told to wait an hour to see if they would come up to her baseline of 73.  In that hour, we packed a bag.  An hour passed and nothing had changed, her saturation had actually lowered (upper 50's, very scary).  We packed the car and headed to the hospital.

We got to the hospital and were admitted directly to the PSHU.  Lucy opted for a wheelchair instead of a wagon.  When we got up to the ICU, Dr. Sajan looked at Lucy and was almost puzzled as to why we were there.  Physically she looked pretty good, so we put on a pulse ox and it read 55.  We needed to place an IV, but when we tried, Lucy went ballistic and dropped her saturations into the 30's.  We ordered versed and decided that nitric was necessary.  Seriously, versed is nothing to Lucy at this point.  She screamed bloody murder through all of it (as I held her down).  A couple doses of IV diuretics, some antibiotics and nitric and within twelve plus hours she was back to her norm.  We decided after weaning the nitric and switching back to oral meds, we would give her one more night to monitor and then home.  Just in time to host Christmas eve and for Santa.

We believe this episode was caused by aspiration, clouding her lungs and making the weaning of diuretics impossible.  With Lucy's oral intake at a minimum, her aspiration has to be mostly from vomiting.  So here we are, December 29th, headed back to the hospital for another procedure that will require us to stay overnight at the hospital.  I would not have thought we could have squeezed another stay at the hospital this year but.......we are first case for a vocal cord injection.  We are hoping that the injection will in essence, pump up her left vocal cord and allow the right side to compensate to fully close.  What does this do?  When Lucy goes to swallow, this will close her vocal cords completely closing off her airway and allowing all liquid to go down her esophagus to her belly.
I'll write more later when I have had time to process.  In the meantime we very much need prayers that this procedure will work.  This is a temporary fix which could not work at all.  There's a chance it lasts a year, but the likelihood is it lasts closer to 3-6 months, in which we would need to go back and do another injection.

Specific prayer requests
~vocal cord injection works and lasts a year
~there are no complications and we are discharged on Saturday
~After the procedure we can start to allow her to drink liquids