And Forth

Lucy’s out of the hospital and back home for the weekend. Diuretics helped with the excess fluid and we’re going back for labs early Monday morning to see how the kidneys are taking it.

We’re also starting an antibiotic for C-Diff, which she tested positive for before we left.

For now, thank you for holding her (and us) in your hearts with prayer.

It must not be too bad if you can sit up and watch TV with chips & dip!

God is always good, and we are in his hands. +james

Back…

We went back to the hospital today. It was supposed to just be a regular Cardiology visit, but after the Dr. walked into the room and saw her breathing he began to talk about admitting her as a hospital inpatient.

It makes me frustrated to go back! Like playing Candyland – trapped into repeated falls and slides in the direction you DON’T want to go. But Lucy has spent the last three days gasping for breath and mostly lying on the sofa, so it seems like the better part of wisdom to follow the Dr.’s advice.

She has no new illness. Just a lot of fluid filling up her lungs and tissue that her heart can’t work hard enough to eliminate right now. Someone told us trying to breath through fluid in the lungs is like trying to push air through water – it’s not easily done.

One thing I was very thankful for is that the Dr. came back to the room before James and Lucy were transferred to ICU and quietly spoke to James. “I don’t think this is the end of the road,” he said. “I could be wrong, but I don’t think so. We will give her a few days here and try to make her more comfortable. Try to ease the work of breathing for her with medication and oxygen. I hope you can go home and get better after that.”

Another sweet thing: I spent all evening shuttling small bodies into proper places (kids from school, brought bags to hospital for James, returned home to relieve the patient fairy godmother who babysat), and when I opened the computer to write and tell you what happened, there were already email messages from people who knew! That’s support for you. Friends who sense your needs before you tell them.

Thanks for praying, kind friends. – Katie

Yards of clear plastic tube

Being home on oxygen means re-adjusting to yards and yards of tubing. Lucy is on the leash of a long plastic cord.  One end snaking out of tall, R2D2-like oxygen tanks, bubbling away through the plastic humidifier filled with water, and the other end taped right underneath her nose.

James prepared by attaching lengths of clear tubing together so the line could reach back to her room from the living room where the tanks reside. It helps that she doesn’t have much will to move around right now – just the patient lethargy of a person devoting all the energy they have to the effort of breath and heartbeat.

It’s hard not to worry about her. Most of the other children run in and out of the house like the tide: out to school, in for snack, out for play, in for dinner and homework. They bring offerings home from school with carefully shaped letters and symphonies of crayon combinations. Lucy tries to sit up and call to them  – here I am! Bring your sounds and color and paper to me! – and they pat her with affection and roll away again as the tide recedes. I wonder sometimes if she misses being able to MOVE like everyone around her. Maybe it has never occurred to her that she could.

I breath short prayers over her when I’m the one close to her. Lord help us…please heal her…please let her get stronger…please don’t let us be at the beginning of a long slide down..

Our times and seasons are in hands other than ours. So much of our lives are normal but the flashes of fear take my breath away, too, leaving both me and Lucy breathing ragged for a moment.

But then she sees me looking at her and smiles, telling me how much she loves me. And I’ve been thinking about the Robert Earl Keen song lately, All I Have Is Today.

All I want to do is climb that mountain;

All I need is the other way

All I am is a lost soul, searchin’

All I have is today (Robert Earl Keen)

We’re not lost. The Lord is holding on to us, and I’m thankful for today. – Katie

You are invited to…

an ordination!

On Feb. 12th, next month, James will be ordained as a Lutheran minister at our church, Water of Life Lutheran, at 3:00 pm. We would be so honored if you could join us for the service, dear friend.

James is thankful for your prayers on his behalf. I really appreciate how many of you have given him words of encouragement and purpose over the last 6 years. These affirmations are like the voice of the Father, steadying him as he weathered the storms of life while slogging through one course after another. (Not, ahem, that the classes weren’t extremely interesting, but the vicissitudes of life can, ah, dim a person’s academic fervor. Let us say.)

I think it might be a blessing that he didn’t know BEFOREHAND all that would happen in our lives over the six years it has taken to finish his seminary training. And the Lord has given grace for one day at a time. The Holy Spirit has breathed through James, carrying him over rough paths and green pastures, troubled seas and calm.

We are saying together that God is good, and we are in His hands.

11 I know what I’m doing. I have it all planned out-plans to take care of you, not abandon you, plans to give you the future you hope for.

12 “When you call on me, when you come and pray to me, I’ll listen.

13 “When you come looking for me, you’ll find me. Jeremiah 29:11-13 from The Message

The church is located at 12340 F.M 1641. There will be the ordination service and a small reception following. Your prayers and friendship have helped us so much along this way, and it would be a great pleasure to share the day with you. – Katie

Day 28 of 30 Days of Thankfulness

Thankful to be home. We came home! Yesterday afternoon it was agreed that we could go home and use our home oxygen equipment while she finishes recovering.

Thankful that this was only a cold. (On the other hand, I’m having to push down thoughts like: “Only a cold? You’ve diagnosed this – oh Nurse with positive hospital test for Rhinovirus in hand – as only a cold?  It takes us a four day hospital stay to cope with a cold?!)

Did you know that’s what the common cold is called by the medically educated? Rhinovirus. Live and learn.

Thankful for kind friends who sent meals, as always. Thankful for kind friends who prayed. Thanks for loving us, friends.

So now we’re home and I’m slogging through MOUNTAINS of laundry. I have a secret theory that the moment I leave the house, James and all the children run to their closets and pull out every single thing they own to stuff into the dirty clothes bin at the end of the hallway. Some inner desire to simplify life calls to them. “I’ll be a monk and just wear this one outfit the whole week she’s gone! I don’t need all these other clothes!”

As if to share our joy, our first day back was a marvel of Texas weather. A balmy, windy, dry-leaf-skittery day, and we walked all around the neighborhood with our portable oxygen tank and the two little girls in their stroller with Amos biking at our side.  I begin to understand C. S. Lewis’ passion for walking.

“…and by two at the latest I would be on the road. Not, except at rare intervals, with a friend. Walking and talking are two very great pleasures, but it is a mistake to combine them. Our own noise blots out the sounds and silences of the outdoor world; and talking leads almost inevitably to smoking, and then farewell to nature as far as one of our senses is concerned. The only friend to walk with is one (such as I found, during the holidays, in Arthur) who so exactly shares your taste for each mood of the countryside that a glance, a halt, or at most a nudge, is enough to assure us that the pleasure is shared. The return from the walk, and the arrival of tea, should be exactly coincident, and not later than a quarter past four.”  – C. S. Lewis, taken from Surprised by Joy

Whispering in the sound of dry, blown leaves and humming along with the stroller tires on pavement is the kindness of the Lord.  – Katie

Day 27 of 30 days of Thankfulness

Some hospital-inspired thoughts.

Thankful for TWO YEARS of life for our baby girl with a heart condition. On Feb. 2nd, two years ago, we were put into the very room in ICU that we just vacated and told our little girl probably wouldn’t live more than a few weeks.

Thankful for hair. A lot of people remember Lucy from two years ago, or more recent stays, and everybody says the same thing: “Lucy! You’re so big! And you have so much HAIR!!” I love it. I’m glad to have hair, too. Mine’s growing out from a really short cut, and Lucy’s is just growing. I bend meekly to wash mine under the indifferent-pressure shower head, and Lucy gets hers washed every couple of days with a special waterless shampoo-in-a-shower-cap. (The beauty technology here is cutting-edge. That, and her oxygen tube doesn’t reach all the way into the bathtub.)

Thankful for fried zucchini and chocolate chip cookies: my favorite cafeteria fare. The chicken fried steak ain’t half bad, either. Lucy gets her fomula through the NG tube, but licked the flavor from slices of cucumber, pineapple, curly fries, and smoky almonds today! As James says, she is a recreational eater.

Thankful, as always, for kind, skilled Doctors and nurses.

Thankful for wireless internet and Netflix. (I’ve been watching my way through the BBC adaptations of the murder mysteries of P.D. James with Ken Marsdon as Adam Dalgleish. Who looks exactly like Ken Hennings.)

Thankful for a lullabies CD one of the nurses found for us to play during naptime.

Thankful for the Lord being here with us. Ps 39:10 even there Your hand shall lead me; and Your right hand shall hold me.

Thankful for the watercolor of a flower and a cross Sunday School craft that Lucy’s big sisters slipped into my bag to take with me. I found them when we unpacked and taped them on the door here. A little bit of Ab and Corrie art makes it feel like home. – Katie

Moving

Moving to the regular floor today out of ICU!

Apparently the breathing trouble Lucy experienced on Monday was caused by a build-up of fluid in the lungs. After two days of oxygen support and some medications to drain fluids, Lucy is regaining her verve. Although she had some signs of infection, she does NOT have pneumonia or RSV. It may be just a virus that was more than her body could handle unaided.

We also have had some just-in-case antibiotics. Many women have just-in-case lipstick, or just-in-case pencil and paper with them. Lucy gets just-in-case antibiotics.

I probably have a little bit of Stockholm Syndrome, because the hospital seems familiar and friendly to me. Oh, boy, our 8th Floor fridge with tiny cute milks and off-brand jello pudding cups! Ooo, it’s the big pull-out bed this time. Bathroom sink not too splashy (we once had one that attacked you with water and left a moist swath across your shirt every time you washed your hands);  shower head with indifferent water pressure – check; toilet paper on an easy-roll holder, thank heavens. Nothing worse than wrestling with the stingy toilet paper roll when you’re in a hurry to get back into the room and hear the daily report from the pediatrician.

If James and I are both here, Lucy also seems to feel fairly positive. The Child Life department brought her some cool toys (pink ‘n’ purple Princess Duplo blocks and a fancy plastic tea set), and her oxygen tube is long enough to let her get out of bed and sit on the sofa. She sit up on the sofa and calls commandingly to anyone who enters. Look, here I am! I’m so big!

Late this afternoon she came over to the sofa, and, catching sight of the snacks bag a kind friend gave us, insisted we have a post-nap picnic.

Good times. What almost-three-year-old wouldn’t like to have Mom and Dad all to themselves for a few days?

If you come and see us we will offer you tea and chocolate-covered pecans or smoky seasoned almonds. – Katie

A Day of Improvement

Today has been a much better day for Lucy. She’s getting warm, moist oxygen and antibiotics while we wait for the lab results to come back with a diagnosis. She is breathing much easier, playing with toys, reading books and watching shows.

Good news is it’s not Pneumonia and it’s probably also not major cardiac deterioration. Thank you, Lord for good reports and for available medical assistance when needed.

One of my former lawyer colleagues used to say about older folks, “Sometimes they just need to check into the hospital for a tune-up. You know, a little medicine, IV fluids, and personal care and they’re ready for the next few thousand miles.” It’s pretty much the same with Lucy.

Thanks for your continued prayers.

God is always good, and we are in his hands. +james

Prayer Request

Please say an extra prayer for Lucy tonight. She is going in to the hospital with complications from a cold. We started oxygen support today for the first time since last May (!). We are praying for no admission or at most a short stay, but she needs to be checked out for things like RSV, Flu, and Pneumonia.

God is always good, and we are in his hands. +james

Day 26 of 30 Days of Thankfulness

I am thankful for Bethany. Remember Bethany? The granddaughter of our church friends who was diagnosed at 2 months old with blastoma (cancerous growths) in both tiny eyes? I’m going to start by telling you that I received permission to write about her again, and her family would so appreciate your continued prayers…

She, all nine or ten pounds of her, has been receiving chemotherapy treatments targeting her eyes through a PIC line (plastic tube placed to directly access the bloodstream) originally threaded into her jugular.

She gets two weeks of chemotherapy and then three weeks off. This has been happening for almost the last two and a half months. You would not think that a newborn baby could endure that, would you? And it seems like something a parent would need superhuman strength to endure … or maybe we could say super amounts of grace …  and they go, and wait through the treatments, and hold her when she cries.

Bethany has has a lot of side effects from the chemotherapy, including nausea, vomiting, terrible skin rashes, and some hair loss. (Although, as her Grandmother says, it can be hard to tell about hair loss on a three-month-old.)

But the GOOD news is that the tumors have shrunk by 30-50%. So much that Bethany was able to have Lasix surgery for the purpose of using laser treatments to directly kill part of the tumors so the body can recognize them as foreign objects and work to purge the dead material from the eye. (Now that I’ve written that I just have to stop and shudder for a minute.)

And Bethany (sweet baby girl – you know the way they smell? Like the sweetness of being alive. Like the warmth of the sun pooled on skin softer than your fingers can really feel) grasps the fingers laid on her tiny palm, and is FIGHTING her way forward. Bethany nurses like a champ, and has not lost an ounce of the weight she had at birth.

There are things that Doctors know and things that Doctors don’t know. They will tell you this. They don’t know what makes some kids with serious illnesses worsen, slipping the tenuous bonds to life one by one; and what makes others revive and heal, turning impossible corners and recovering from comas and paralysis and certain death.

Many physicians have told us that Lucy is a miracle. To survive her initial heart attack! And RSV! And the Flu B! And respiratory failure! And renal failure! Amazing!

I think it’s amazing, too, but I think the Dr. who told me that God must still have purposes to fulfill in her life was right on. Purposes for Bethany, too. They have places in the Great Dance, and loving people who need them as desperately as any beloved one has ever been needed.

Sitting in the hospital, waiting in rooms, attached to machines, in the rocker at home, tucked into arm-crooks, laid on knees; we care for our children on the outside. Change the diapers, strap in the carseat, sooth the colic, get another meal, read the book, tie the shoes, turn the backwards shirt around. But it all comes down to the same thing.

I love you. I need you. I am here beside you.

And Bethany is absorbing that through her pores even as her body fights its way through the poisons she must endure to kill the cancer.

Thank you, Lord, for Bethany. For Your vast, eternal, Loyal-Love in and around and with her. Thank you that You hold on to us, using parent-arms and child-hands to help us know : underneath are the EVERLASTING ARMS. – Katie