One Week Down

We are back home after the first week and it's a relief to be back.

Everything went well with the first four treatments aside from some high anxiety and emotions.

Thanks to everyone who continues to keep us in your thoughts.

 

a smile

It's been awile 2

I'll have more to say soon!

It's been awile

Haven't been updating as frequently, sorry.

We saw Dr. Singer again. He was encouraging as usual. Lilli can pretty much try to eat anything she wants. It has to be smooth, preferably blended.

Lilli was really happy to hear this. Although it is difficult for her to swallow enough food to get all her nutrition, she is happy to try drinking some green smoothie and of course ice cream (vegan) and popsicles.

She is still using the formula, but she's also doing meals that are her own creation. She had perfected green smoothies before the surgery. She uses avocado, coconut milk, swiss chard, kale, other greens, protein powder, sometimes banana. It's actually very tasty and refreshing.

First Foods By Mouth

Lilli worked with ice chips last night and went for popsicles today.

She has her first favorite food with her new tongue- cherry, orange, or grape popsicles.

She says they "taste" the same as she remembers. We already knew from our research that your tongue senses only sweet, sour, salty, and bitter, but your nose tastes flavors such as orange or basil.

She knew she would recognize food the same way, but she actually thinks she is getting sweet tastes and sour tastes from the popsicles. We had read a study that documented cells in the back of our throats and the roof of our mouth may also be sending info on sweet and salty to our brains. Memory of tastes is also recognized as an important component of how we process flavors.

Truly amazing science before our eyes. 

I'll try to get more posted on the blog and get some short video clips up.

We finally made it!!!

We ended up getting out yesterday at around 5:30 in the evening!!!

We had to set-up our own little care room at our friend Barbara's house.

Lilli slept pretty well, is doing all of her own care, and went for a long walk this morning!!!

Onward!

I'll gladly pay you Tuesday for a home care nurse today

Doesn't look like it's gonna happen today.

Tomorrow for sure.

Lilli's ready to get outta here, she's doing all of her care herself. This includes her feedings, her trach maintenance, suction of her mouth, and changing of her dressings and drain.

A case of the Mondays

Welp, we're almost outta the hospital.

May be tomorrow, Wednesday for sure.

Day of rest?

Now that Lilli is getting proper nutrition, she has a lot more energy. She got a shower today which was pretty fulfilling for her, but with saran wrap covering her IV, her G-tube, her drains on her back,  and a towell to keep the trach dry, she didn't get to really get into the shower like she would have liked. I guess she's getting used to all the little sacrifices she has had to make over the last week and a half.

Testing, "1, 2, 3"

Lilli had the cuff on her trach deflated and talked for the first time since the surgery.

She was also able to smell and she did not like what she smelled, since she hadn't showered in a week. This was a laugh to everyone in the room.

Friday's Tubing

Lilli had surgery this morning to place the new feeding tube.

She will have to wait 24 hours before they can feed her.

She's gonna really hungry by then.

Thursday's Hunger

Lilli hasn't had food since her last meal of Ethiopian food on Thurday the 10th.  With her NG tube out, all she gets is IV "food", but it's more like fortified sugar water.

This has left her "hungry as a bitch wolf."

This is a good sign, but now they have to operate on her to insert a feeding tube directly into her stomach. Sounds kinda grizzly, but it's a routine procedure that takes about 45 minutes under heavy sedation (but not general anesthesia).

Nick went home to check on the animals.

Wednesday's Relief

I'll keep it short, to be edited later if needed.

Lilli got the NG tube pulled because it was triggering her gag reflex. This solved the problem of not being able to find an anti-nausea medication that would work.

She was in immediate relief!!!

Got to expell her last meal of Ethiopian food, oops, TMI...

Tuesday's Hoops

We view Lilli's healing process as a series of hoops.  She's been jumping through them since late December when she decided it was time to re-evaluate her healing process.  Yesterday's hoops included: getting out of the ICU and into her own room and she even sat up in bed last night.

Today's hoops have included: getting off of IV pain meds, sitting up in bed, trying the only federally legal version of marijuana, and maybe even washing her hair.

These all seem pretty small, but the sooner she gets up, the sooner we can move to our next location for more healing.

She's staying very resilient and alert.  Her spirits are high despite feeling crummy.  Her sense of humor has been with her the whole time!

I'll try to add some more photos when I get them.

Take care everyone, Thanks for all the support!

Nick

The start of a new week

Nick here,

Everything has gone really well so far.

We will update this frequently.

Once Lilli leaves the hospital, she will assume the postings.

Thanks to everyone who had us in their thoughts!