Home again, home again

Happy to report that Lucy came home today!  She had the lumbar drain in for 10 days without incident, and yesterday when they clamped her drain she had no leakage. Her doctors felt that she had waited long enough and pulled the drain this morning.

Jack and Garrick came to fetch her dressed up as secret service men in corduroy pants and madras shirts.  No doubt this will initiate a change in the real secret service uniform...

Balloon greetings, posters, and jumping boys welcomed Lu back into her noisy home.  She propped herself on the couch all day; we intend to keep her that way for about two weeks.

Rain Forest in 5243

Richard and Lucy decorated the room this week with Carle-inspired cut-outs!

Today's news:  Lucy's drain will be clamped tomorrow, and she will go home Saturday if all goes well.  If she leaks at any time before or after she goes home, the plan is for temporary internal shunt placement, which would route her CSF to her stomach for a couple of months, buying even more time for her brain to close on its own.  After that, persistent leaking would necessitate another open craniotomy as the sole remaining solution.

We hate the thieving disease that presses us behind and before, but this myopia does produce a full awareness in us of the present moment.  As Jim Elliot said, we are "all here"-- a rare gift.

Angels in the wilderness

Here are just a few of Lucy's this weekend. She has minimal pain,and lots of activities to keep her busy in bed. Recent accomplishments include a Lego helicopter and a bunch of schoolwork!

Good signs day 4/10

We are happy that Lucy is settling into her routine for this session in the hospital.  

The weather has been encouraging, and Lucy likes going down into the children's garden for a quick walk.  She is so independent that she won't allow certain people to push the pole for her.  

The nurse commented that there were a few flower petals stuck to her pole when we got back from her walk.  I like that image...

She has had no further drainage since her surgery on Tuesday.  This is as expected since the lumbar drain has been replaced.  

Fortunately, she is having very few headaches which are controlled with ibuprofen and the occasional dose of tylenol+codeine.

We are expecting at least 10 days with the drain in, so that the repacked surgical site inside her nose will have the most time to heal.

Lucy has shown some artistic vigor - maternal traits for sure.  She has been drawing and dazzling the staff with her amazing detailed clay projects.  

Settling In

The last few days have been irritating, fragile days for Lucy, but she's better today, thanks to some cheery visitors and her first good sleep last night.

Here's an image for her, a friend's lime tree blossom:

There are times when all that is asked of us is just what is asked of the leaves and flowers... They continue in the plant, the sap flows up to them.

(Amy Carmichael)

Inwardly we are being renewed day by day.

(2 Corinthians 4:16)

Lumbar Drain Take 3

Lucy went to surgery around 4pm today.

She had another lumbar drain placed and had a vigorous attempt to close the leak inside her nose where they accessed her brain.

All the doctors felt the procedure went well and were optimistic that it could finally close if we could wait long enough with the drain in.

For now the plan is at least 10 days with the drain.

There is no home version, so we have asked the Name Plate committee to bring us a Silver plate with Lucy's name engraved for her door.

In reality many kids stay in the hospital for far longer and have greater ups and downs with chemo and the like.  We are fortunate to have to sit there with a drain in her back and headaches.  Maybe since I wrote that here, I will be more likely to remember...

Up & Down

We actually got to go home on Saturday.  Lucy had a great few days at home, carefully following the DONT precautions.  She felt so good that it was hard not to stomp in the rain or ride her plasma car.

We struggled not to worry too much about another leak.  Had to discipline myself not to look at her nose or ask her about every sniffle.

This morning around 5:30, Lu came in to tell us that she had noticed a funny taste, with drainage down her throat that seemed like a leak.  That's right, Lu diagnosed herself with another leak.

We came to Egleston again and walked into the ER with Lu dressed up like she was headed to a party, pulling a polka-dotted backpack.  I felt silly checking her in.  The triage nurse said, "What's wrong with your child?"  I said, "She has a CSF leak from her recent surgery."  "How do you know she has a leak?" "I'm a doctor."  I wasn't try to be a wise-guy, but I am worn out and wanted to cut to the chase.

The medical team mobilized and Lucy has gone back for a more extensive repair of the area in her nose where they accessed her brain before. AND
another lumbar drain.   I asked if we were up to our free drain yet, since we had now done 3.  Not yet...

At least tomorrow

Lucy slept great and kept a dry nose. She woke with the typical nausea caused by her antibiotic infusion, and a headache, easily dealt with by our friend tylenol with codeine.
The medical staff will continue to watch her nose for another 24 hours, then observe her bend from the waist to make sure nothing streams out. If everything looks good, she may be able to go home tomorrow afternoon.

Drain Pulled!

Lucy's surgeon pulled out her lumbar drain tonight after 12 hours with it clamped and no cerebrospinal fluid leaking out of her nose. If her brain's fluid cushion remains intact and the wound remains sealed, she will go home tomorrow.
She ended the night feeling great and giving away precious slices of Joy's chocolate chip pumpkin bread to her favorite nurse Katy and her neurosurgeon Dr. Wrubel.
Here she is earlier having her hair done by her grandmother Kakhi.

Clamp tomorrow

Glad that the nursing station was equipped with the age-old treatment for nausea - Coca cola.  (This is not product placement, so Liz don't get too excited.)  She woke with a slight headache and some nausea that are both better lying askew in the bed as you see from the photos.  She tried Zofran, which slowly began to work.

Once she started sipping the coke with the magical crunchy ice, she was well on her way to ordering breakfast.

Grover provided distraction until her breakfast arrived.

Our doctor stopped by and said we would proceed with plans to clamp her drain tomorrow.

Clamping the drain allows the CSF pressure to return to normal.  That should alleviate the headaches and nausea she has.

As the CSF pressure returns to normal it will test the surgical site above her nose.  We will watch for any more signs of drainage like she had before.  We really hope her nose stays clear for a day or so, because... If it stays clear after clamping, then the drain can be pulled & WE CAN GO HOME!  Please join in praying for this outcome.

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?!