frail

Lucy is fragile.  Lucy has had life saving surgery.  Lucy has been close to death.  Those words are hard to say and it's probably why I have never said them.  But the reality is that she is very fragile and minor surgery like a g tube is making that evident.  I know, I know, no surgery is minor.  But compared to what we have been through for Lucy it should be.  It's possible  that I want her to be strong physically so I convinced myself she is.  Yet again, I have been fooled.

Maybe it was the success of our NG trial that had me so hopeful.  We placed the NG tube Friday night (thank you to those that offered to come help, it was truly appreciated).  We did continuous feeds at 20 mL/hour overnight.  Saturday we increased to 30 mL/hour.  With minimal throwing up, we decided to try some bolus feeds.  I know, optimistic.  To my surprise, she handled 60 mL/hour, then three more bolus feeds at 90 mL/hour.  Going into this surgery that was our biggest concern, her stomach couldn't handle the feeds.  Surgery on Monday went as expected with no issues.  The hardest part was no eating or drinking the first day.  Tuesday we could eat so we made a grocery list to ensure we had all the food she wanted.

-black olives
-extra sharp cheddar cheese
-canned green beans
-peanut butter and honey for sandwiches
-strawberries
-grapes, the peeled ones (she doesn't know I do this by hand or she does and does not care)
-orange juice
-orange chips (sour cream and cheddar)
-crackers

Sour cream and guacamole were added because those are some favorite from home.
Quite the palette for three year old.  As much as she asks for food, she eats hardly any.
Tuesday, we started feeds slowly at 20 mL/hour for four hours.  No issues!  But slowly as the day went on her breathing changed.  We started her first bolus feed of 60 mL/hour, but mid way through she looked really distended.  We stopped and gave her a glycerin chip to help her poop. The doctor decided it was better to do continuous feeds overnight.

By Wednesday morning, holy crap......she was puffy!  So much so, she dropped her saturations to the low 50's and we had to switch over to high flow oxygen at 10 liters.

The stress of this minor surgery (I use that term loosely) wreaked havoc on her body.  Her x-ray on Tuesday and Wednesday (along with her echo) showed a small effusion, but nothing that should be impacting her this heavily.  Wednesday the team decided to give an IV dose of lasix, and boy oh boy.  her diaper was huge.  Although it helped it didn't solve the problem.  Lucy kept dipping her saturations and she started retracting (for those that don't know retractions are a sucking in of the skin in between or around the bones of the chest when inhaling).  Honestly before this....I have never seen Lucy retract.

We hoped the extra IV diuretics would do the trick, so we gave Lucy a day and skipped x-ray on Thursday and took a trip down to radiology Friday morning.  An x-ray can be more clear when you stand than laying in a bed (hence the trip).  Probably a good thing we did.  The x-ray showed the same small effusion and aspiration pneumonia.  This girl seriously can't catch a break.

How did this happen?  It's possible some of this has been happening slowly over the last couple months.  Although we tried hard to restrict her from thin liquids, I can't say she hasn't gotten her hands on some.  It's also possible, it happened over the course of this week.  With being intubated for surgery, more damage to her vocal cords could have allowed small amounts of liquid to slip into her lungs.  Either way it happened, it doesn't really matter, because it's there and we have to stay until it clears up.  Today, in order to do everything possible, we put Lucy back on high flow with nitric, added IV diuretics back, started an antibiotic and restricted her drinking.  Feels like square one, nitric was a bitch to wean over the summer and I am not looking forward to doing it again.

This was a huge blow and evidence of Lucy's frailty but we still have some good news to report.  Lucy is successfully handling her feeds (on a home regimen at that...this is huge!).  Although we will probably be in the hospital longer than we wanted, we can start to play around with her feeds.  The worst part is the tube site is still pretty sore and she HATES when we have to take the tube on and off.  It should get better as it heals, but for know it sucks!

Her demeanor is touch and go.  Sometimes she is great and just hilarious!  Bossing people around, she literally told one of the cardiac fellows to go get her ice.  She also still has a little PTSD from our summer.  I have to give all her meds and anytime someone is by her bed she says "She is not going to touch me, right?"  Breaks my heart!  We have been able to get her up and out of bed.  Unfortunately we have had to use presents under the Christmas tree in the unit to do so.  There is a Mickey Mouse figure that "brings presents" but the caveat is that Lucy has to walk there from her room to get the present.  Her first present was a backpack doll house courtesy of my Aunt Betsy and her granddaughter (who knows hospital life all too well) and her second present was Sadness (her favorite character from the movie inside out) courtesy of one of our favorite nurses, Kate.  Hopefully we bust out of the hospital soon, because she won't have any other presents to get come Christmas