Puzzles

Lucy and I both have had some good time doing puzzles.  

We had to shoo away one of the head nurses who came in and started trying to place pieces.  

Lucy takes great satisfaction in a completed puzzle, as any accomplished young woman would...

Better than medicine

Today, as Lucy was lying in bed with a growing headache, a hospital volunteer stopped by and asked an important question, "Do you want to do anything fun?"

Lucy didn't feel like talking much, but moved her head enough to make a nod.  The volunteer asked what she would like to do, and Lu said "puzzles".

A few minutes later the volunteer came back with three puzzles that they worked on for a solid hour.  Sure one piece was missing from the first puzzle, but with 3 brothers that is expected.

Sophia is an emory student who is interested in pre-med.  When I asked why she volunteered, she said because she was sick as a kid and spent a lot of time in the hospital.  It may have been me, but she seemed to choke up when she said it.

You should have seen her affirm her every placement of a piece.  I almost couldn't take it, but Lu loved every minute of it.

After Sophia left, Lucy said, "She was better than medicine".

I'll say nothing more...

Still Safe

Lucy's hospital stay the last 2 days has been an erratic experience. The medical staff worked out several small issues with the drain, and her mood, pain, hunger/nausea, energy level, and amount of csf drainage have each been constantly changing. Her basic safety, however, remains the same: no signs of infection, great labs and vitals, and-- most importantly--a dry nose.
The lumbar drain will not likely be pulled until Friday, to be certain that the surgery site has had ample time to dry out, and her brain has fully sealed.
Thankfully, she is ending today more like herself than any time since admission.
She lost a front tooth Friday night and shows off her gap for you below!

I like the hospital

Well, at least one of us feels this way.  Lu really does feel cared for and attended to at the hospital.  

She loves being able to order her food off a menu with fewer low-carb restrictions than we impose at home.  She is piled with blankets and a custom pillow case.  Puppie a huge soft doggie is perched on the bed.  (We are grateful to our neighbor Frankie who brought that over.)

She is building good relationships with the nursing staff.  She has a few that seem to pick her each night. 

Lu has had more pain in her back than headaches in the last few days.  It is controlled with motrin and tylenol+codeine.  

Currently sprout's Caillou is keeping Lu company while I type this.  She has been making cakes, cookies and milk-shakes on the cooking apps on our ipad.  She has sudden bouts of pain when we mention doing school work, but that is a sign of intact child cognition.

Her brothers are going to pay her a visit this morning before church.  I give it 3 min before the room feels intolerably small once they arrive. 

Patch-Up and Lumbar Drain

Lucy was admitted to the hospital yesterday and had a short surgery last night; her two surgeons (neuro and ENT) met her at Egleston, put a lumbar drain back in, and tried to discern the source of the leaking CSF.  Apparently the bit of fat from her belly that had been packed into the bone/glue/tissue "torte" had begun to die, eroding the seal.

She has so far escaped the brain infection that can happen when the brain is exposed.  She is also experiencing very little pain, a huge surprise!  She is eating, drinking, moving around the room, and watching Sprout. She vascillates between cheerful/ asking for visitors, and fragile/ exhausted.  We will be here at least 5 days while they watch the drain, her nose and the rest of her body.

Thanks for hanging in there with us!

p.s. The overuse of passive voice in this blog drives me crazy, but it's indicative of the experience.  Not many active verbs apply.

CSF leak

Lucy has been doing great since our discharge on 8/30.  Back to school and helping running our house.

Yesterday she seemed to have a cold, as our other kids had recently.  Lucy has had a really strong immune system, so often doesn't even catch what the other kids do.  She had a runny nose and slightly achey muscles.

The more we watched, the more I became concerned this wasn't a cold, but a possible complication from her recent surgery.  A leak of cerebrospinal fluid from her nose.

I talked with her doctor this morning and he had us come into Egleston ER.  Her nose had mostly stopped dripping by the time she got there and I was feeling a bit dumb.

She leaned over forward and clear fluid leaked out of her nose.  Much more than usual for a cold.  Our surgeon agreed it was probably cerebrospinal fluid.

The plan is to replace the lumbar-drain in the operating room today at 5pm or so.  It is a very quick procedure, but the source of much of her pain after surgery.

Lucy is looking forward to ordering food from the hospital cafeteria tonight after the procedure.  

I am amazed at her bravery.  She actually enjoys being here.

Lots to celebrate

Lucy turned a corner yesterday, playing with visitors and taking a walk around the neighborhood. She went to church this morning and celebrated Richard's birthday tonight. Her appetite has finally returned, and her weakness and pain have significantly decreased.

What's ahead now?
We will continue to post any updates here, but likely there will be little news until we get her second MRI in November, the scan that will determine how much of the tumor is left.

She will have a follow-up cleaning of the surgical site with the ENT in a couple of weeks, and an eye surgery sometime this fall, but this week she will be working hard to catch up on all of her schoolwork. We think it's wonderful to only have 7 days to make up instead of being set back an entire month, as with the chemo last year.

Her reward for working hard tomorrow is "SpaBakery"-- an afternoon making cookies and getting her nails done with 2 of our favorite teenagers! Does it get any better than that?!