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...