Friday, October 31, 2008


We got home Tuesday afternoon, and life is immensely easier now that we are all in one place. Transportation was interesting -- I will post some pics of that. But, she grinned at not having to ride in a car seat or wheel chair!

The last couple of weeks is catching up with Ray and I, so I will post more when I'm better rested and more lucid.

Pain control is good - Tylenol once a day, plus homeopathic remedies, she's tolerating her feedings well, and looks absolutely great.

Monday, October 27, 2008

Big Steps, Little Bumps

Sorry for the delay in posting...I've been doing the night shifts, and by the time I get home in the afternoon I am focused exclusively on getting to my bed as quickly as possible!

Abbie continues to look wonderful, blessing us with many smiles and grins. She was especially happy this morning when I turned on her favorite PBS shows, "Sid the Science Guy" and "Super Readers."

She has not had any Tylenol 3 since Saturday, which blows me away. If I were in her position I would have taken up arms to fend off the folks who took out the epidural, let alone taking away all narcotics! She is also completely off oxygen now, and satting 100% most of the time.

So...why is she still in the hospital? Turns out she came down with a urinary tract infection, whis was not unexpected after three days of having a catheter. The challenge is, her infection was caused by a particularly tough bug to treat (pseudomonas). There are not any great oral medication options for this one, so she continues on IV antibiotics.

But, now that we are in a private room it is not bad at all. In fact, it is almost a luxury to still have the extra hands to help. We WILL be coming home tomorrow, however. HURRAH!

We could use your prayers for the next three weeks of being in a cast: no skin break down, complete clearing of the UTI, lungs remaining clear, and ways to keep Abbie entertained and engaged.

May I also ask that you extend prayers for another boy facing the very same surgery on Wednesday? Cade lives in California, and his mom,Lisa, and I have become email pals. I must tell you about Lisa, though. She sent me a note explaining that she recently did her first 1-mile ocean swim race in a long sure changes after brain injury. Anyway, she said that she dedicated the swim to Abbie, and with each stroke thought of and prayed for her. I was brought to tears (not good when reading your Blackberry while driving--just next to the curb, not in traffic:) I know her life is just as challenging as mine, yet she was praying for my girl!! The link to his website is on the left of this update, so hopefully Lisa will update as she is able after the surgery.

I am already anxious to see what Abbie is going to be able to do with these new legs, and pray the time passes quickly. Thanks for cushioning the path with your prayers and care -- what I thought would be a rocky road has been a nice hike instead.

Saturday, October 25, 2008

Out of the PICU

Just talked to Ray who said that Abbie is now ensconced in a very comfortable private room, which also has a sleeping bed for me!! The past couple of days have been very smooth. The epidural and foley catheter came out on Thursday, but her pain has been well controlled with Tylenol 3, while Valium has been successful at keeping muscle spasms at bay. She is a bit more sleepy, but I am content to let her rest and recover at this point.

The consensus from the ICU doc, the surgeon, and her pediatricians is that she looks "awesome" today, and we will most likely be heading home on Monday. She is a bit anemic, so they started some extra iron, and didn't feel it was acute enough to require a transfusion.

We were so blessed with incredible nurses in the PICU -- I am always blown away by their competence, compassion, and insight. A very, very special group.

I learned how to change diapers by myself, a mix of contortion and strength..perhaps I'll be ready to join the circus by the time this is over. On second thought, perhaps I already AM in the circus:).

But, this I know: God has once again shown Himself faithful and strong on Abbie's behalf, and in the care of all of us.

Abbie is now on the Wilcox wing, in room 208. So, feel free to visit!

Wednesday, October 22, 2008

Never a Dull Moment

Abbie had a much more comfortable night last night, but it didn't mean things were boring. I was dozing in the chair next to her bed, when at 4:30am a nurse gently awoke me and said, "I don't mean to alarm you, but it looks like we are going to have to evacuate, because there is a fire."

My response was "Am I dreaming or are you joking? Either way I'm not laughing."

She told me to go look out the window in the break room. joke, and I was now fully awake, so not a dream either. Orange flames and black smoke emanated from the church preschool situated 20 feet from the back wall of the hospital. I called Ray and said one of the less smart things to say at that hour, "Are you awake?" But, just as I was telling him he may want to come down, not as Abbie's dad but with his CEO hat, the nurses told me we were going to stay.

Daylight showed how much damage the preschool sustained, and how fortunate we were to have not been more affected.

The PICU is on the top floor just behind that tree. The windows you can see on the top floor are the NICU. Obviously, it was a stressful night for the staff!! This picture doesn't show the extent of damage to the preschool, but it sure does show how close it was!

The rest of the morning brought news that changed our plans somewhat. Abbie's left lung is still pretty filled with mucous. It is better than it was yesterday, but the effects of laying flat on her back during that long surgery mean that we will not be going home tomorrow or Friday as we had hoped. In fact, the PICU doc said that we will be staying in the unit until at least Sunday, with some more days after that down on the pediatric floor. Rats. But, the important thing is that Abbie is doing great and looking awesome.

Genevieve is coming up to stay with Abbie in the afternoons so that I can come home and get some rest. I'm always fading into incoherence around noon, so by the time she gets there at 1, I am really looking forward to my bed. This afternoon I went to the van, turned the key and heard "click, click, click." Noooooooo! Ray was in meetings, so I thought I'd go back inside, eat some lunch and keep wait for school to get out so Chase could come get me.

Turns out, I didn't have to wait since I had a "Holy Taxi":) on the way. I ate lunch then went into the hallway where I ran into my pastor, who had just seen Abbie. He was kind enough to give me a ride and make my day by telling me that Abbie woke up while he was talking to her, and was trying to communicate with him with her eyes, her mouth and her voice!

I think her epidural will be turned off, and perhaps even removed by the time I get back tonight. She will be getting Tylenol with codeine through her Gtube instead. I am hoping it will keep her comfortable, but realize it may sedate her a lot more as well.

We continue to be so blessed by your prayers and visits! Please keep praying for pain abatement, and for those lungs to clear. I am realizing I probably need to explain a little better what was done, but I've got to get back.

Here are our purple ballerina legs...beautiful, yes?

Tuesday, October 21, 2008

Yes and Yes and Yes AMEN!

We're now 24 hours post-op and I am in mild shock at how wonderfully everything has gone. I could not get on the internet in the PICU last night, but wrote some notes on my laptop so I wouldn't forget anything. As I looked back at those notes I realized I had pretty much written an update, which is helpful since I don't have much time right now.

Bottom line up front: Abbie was in surgery for 8 hours, had eleven procedures done: osteotomies on both femurs (they were cut, and pieces removed from each), head of femurs replaced in hip sockets, right hip socket reconstructed with bony material taken from femurs, adductors (inner thigh muscles) released, IT band (on outside of upper leg) released, gluteal muscles released, quadriceps tendons above knee released, peroneal tendons (outside of ankle) release, and achilles tendons released.

The breathing tube had already been removed by the time we saw her in the recovery room, and we were so relieved at how good her color was and how strong she looked. Today they did a chest Xray that was junky on the right side...but is is mucous not pneumonia. Abbie is getting treatments with "The Vest", a band that goes around her chest and thumps her hard enough to shake the whole bed. I cannot imagine what this must feel like with broken bones...but, thankfully she still has the epidural in.

Here's the update I wrote last night:

"First Verse read in PICU…opened to Psalm 18:16-19, while looking for Psalm 20.

“He sent from on high, He took me;
He drew me out of many waters.
He delivered me from my strong enemy
And from those who hated me, for they were too mighty for me.
They confronted me in the day of my calamity,
But the Lord was my stay.
He brought me forth also into a broad place;
He rescued me, because He delighted in me.”

How appropriate for Miss Abbie! For, I know the Lord surely does delight in her, even more than I do, and I am truly amazed by her. He DID rescue her that day. Finding out recently from RJ that she was face up in the pool…looking toward Heaven…I know she was never alone, and that what the enemy meant for evil God has used for so, so much good and glory.

She is overwhelmingly beautiful as I look at her sleeping peacefully, with rosy cheeks. The post-op evidence of trauma I expected to see on her face is not there. Perhaps it will come later when the epidural comes out, but for now she looks just like herself, only heavily accessorized!

I am surprised out how high the cast comes up around her waist. Getting to the G-tube is tricky, and I only hope she doesn’t end up with a sore from the cast compressing the tube onto her body. Purple it is! Bright and bold, regal and royal..and legs positioned like a Chinese gymnast in training…yikes! This is going to be an interesting month (yep, 4 weeks instead of 3) of trying to change diapers and find comfortable positions with this behemoth swaddling her entire lower half.

But…we are through it! We did it, and she came through beautifully! I cannot yet fathom that all the dread we’ve endured for the last three years about this surgery is over! Of course, she is still heavily medicated, and I think there are probably going to be some difficult days ahead, but the truly terrifying part is over! We can finally breathe and look ahead to all the exciting things Abbie will be able to do with flexible legs and strong hips!

I am overwhelmed at the faithfulness, kindness, and perseverance of our friends. Bonnie Sutton praying down the list for 2 hours!!! So many calls and emails. Katie coming for a 2 hour lunch (with Ilisha…nothing like a beautiful baby to make the heart sing)

As I got a really positive update while sitting in the cafeteria, I turned to Katie and said, “There were so many days, sitting in the cafeteria, looking out these windows, when our prayers weren’t answered…it is so great to get YESes today!!’

Another big difference…Abbie complaining loudly in the PICU when her pain got a little out of control. I was so very glad to be with the kid making a commotion! The nights of envy I had, sitting by a silent bedside, listening to other kids recover enough to throw fits, ask for Mommy and popsicles…tonight it is us! That feels soooo good!

How completely blessed we were to have Bill and Rob do the surgery, Alan do the anesthesia, Lynette and Jayna observe (with Lynette talking Abbie to sleep as they put her under.) She was never left alone with strangers, and had the best of the best in every aspect.

ANSWERED prayers still amaze me in their specificity: NO blood transfusion!! Abbie shocked the surgeons at how little blood she lost..”even in places where she should have bled a lot, she didn’t bleed!!” She was extubated before we even saw her, breathing room air before we left the recovery room. NO anesthesia excitement at all during the 8-hour surgery. They are being very aggressive and timely in dealing with pain…keeping Abbie comfortable and me confident. Bill and Rob were very pleased with what they were able to accomplish, and feel the hips went in very well once the adductors were released. 6 weeks from now Abbie and I should be back to our sunrise running date – something we will both look forward to.

Seeing the hearts of her brothers revealed. They ALL insisted on getting up at 4:30am and going with us to the hospital. At first I thought this was a bad idea on a school morning, but I was so thankful they persisted. It was an amazing blessing to have our whole family together, soaking in precious time with Abbie, each praying before they had to leave for school. Having each of them call more than once during the surgery to see how it was going and ask when she would be done. Having them come straight here as soon as she was out, wanting to go the recovery room (not a place for a parade of 6 people). Waiting patiently in the hall and craning their necks for a glimpse each time the door would open. Kisses and “Hey Abbie” as we wheeled her to the elevator; delaying the entry to the PICU so they could catch up and kiss her again. None of us have been in this place with Abbie for a long time (four and half years), so this episode has resurfaced family bonds, loyalty, and affection that sometimes get buried in the daily chaos of a busy household.

The last time we came to the PICU it was also on a Monday. Dr. Chang was the intensivist on duty that Monday as well. Tonight I went to the bathroom next to the waiting room to change clothes and brush my teeth. I looked into that same mirror…the one into which I often silently gazed so long ago, wondering what had happened to my old life, and how I could survive my new one. I didn’t see the same person tonight. You don’t realize changes day by day, especially in yourself. But looking in that mirror that had reflected such grief and bewilderment, tonight I saw joy, calm, and the accumulation of all the lessons we’ve learned, love we’ve received, and wisdom we’ve gained. Tonight, I smiled at that mirror."

So, thank you , thank you, thank you for praying so fervently and specifically -- it had a powerful, documented impact! She will need your continued support in the days and weeks to come, primarily in regards to muscle spasms. When we first saw the surgeons they explained that after the initial post-op pain subsides, muscle spasm could cause pretty extreme pain for up to a month. I answered that the same people who prayed for no blood transfusion would be praying for no muscle spasms!!

I cannot use my cell phone in the PICU, so communication is really limited. I will try to keep the updates timely, however.

We are relieved. We are blessed!!

Sunday, October 19, 2008

Here We Go...

We got the green light from the pediatrician on Wednesday, so the surgery is set for Monday at 0730. My approach with Abbie in all of this is honesty. She deserves to know what is going on, what is being planned, and why. Of course, I tell her in terms that a 7-year-old can understand. Once in a while, though, she lets me know I'm not being thorough.

I was explaining to her doctor exactly what the surgery will entail, when I noticed a look of deep concern on Abbie's face. Oops! I'd forgotten to tell her one very important detail. "Abbie," I said, "You are going to be asleep during all of this. You are not going to feel anything. Uncle Bill and Uncle Rob, Auntie Lynette and Auntie Jayna, AND Mr. Bear are all going to be right there with you. Daddy and I will be waiting for you when you wake up, OK?" All better...worry lines gone. You'd have thought I would have mentioned that part to her a long time ago!

So, we are just about ready. Mr Bear (a beany baby) had a bath yesterday, her new nightgowns are stacked, and most importantly her lungs are perfectly clear. RJ's class was scheduled to have their much-anticipated week long camp beginning Monday, but late Friday evening we got an email that the camp was double-booked, so the trip would be postponed. A couple of tears of disappointment and frustration slid down his cheek, but his whole countenance changed when I reminded him that now he could be here for Abbie while she's in the hospital --something he's been very concerned about missing. So concerned, in fact, that he's been insisting that he will go to the hospital with us at 5am on Monday, and then walk the 2 blocks to school. He is not as overt in his affection and concern, but his love for his sister runs DEEP.

Ray and I are at complete peace with this surgery, and are confident that all will be well. As I began pulling everything together this evening I thought, "I didn't get advance notice the last time we went to the PICU on a far different Monday. I sure like this way better!" Part of the reason I like it better is that we can PRAY ahead of time. Here are some specific things you can help us cover in prayer:

-- Peace and security for Abbie, the bravest one among us

-- No anesthesia problems, clear lungs, extubation in the OR or recovery room

-- No blood transfusion: The surgeon says she will definitely need one, but I'm still praying. If she does need blood, we are praying it is clean, healthy blood, and praying that God would bless the giver.

-- For the team: surgeons, anesthesiologist, nurses, techs: that God would give them wisdom, precision, skill and flow, that things would just "click" in the OR

-- Abbie's two PTs, Lynette and Jayna, will be in the OR to observe, but in a way they will also be my hands and presence. I
don't think I could stand to be in the OR, even if allowed, so these two will be there as professionals, but also as my
proxy. Pray that Abbie will sense their presence and support, and that they will benefit from being in there.

-- Complete surgical success: The hips are in a position where they don't like to go back into the sockets. Please pray they'll be willing. The surgeons will also rebuild the right socket using bony material taken from the femurs when they are shortened. In addition, three muscle release or lengthenings are planned: her adductors (inner thigh), the rectus femoris right above the knee, and some tendons on the outside of her ankle. Please pray that each procedure would go smoothly and produce the best outcome possible.

-- Aggressive pain control. Abbie will have an epidural for the first couple of days, so this should really help. My goal is to not let her suffer one more ounce than is absolutely necessary.

-- Quick recovery: even more than pain control, I am praying for pain abatement. Please pray that she would not have muscle spasms, since this will be the major source of pain after the immediate post-op period.

-- Joy! We went to the lab for pre-op blood work on Wednesday. It is in the basement near the OR. As we were leaving, I saw an OR tech pushing an empty gurney. My stomach turned as I imagined putting Abbie's little body on that very white sheet, and I wondered whether all our confidence is a mirage that is going to evaporate on Monday morning. Are we really ready? Then, I realized I was looking at it all wrong. Thank the Lord that we live in a place where my girl can have a surgery to fix her legs -- how blessed we are! So, I am praying to hold on the right perspective, no matter what happens. We will count it all joy.

Abbie's OT recently lent me a copy of "The Shack", which I read in 2 days. What a preparatory blessing, to catch a sidelong glimpse at just how big God is, and how much more is going on than we can see. Every morning I stretch Abbie out on the massage table. Her favorite exercise is stretching her neck (she smiles at just the mention of it.) I call her my "swan-necked girl", and make up silly songs about that while envisioning the two of us dancing in meadow...her body moving freely, her curls blowing in a breeze and her voice sweetly carrying the tune with a giggle. For a moment, she and I escape together, as our spirits go to the meadow. The book made me realize I think God smiles at that, and perhaps even hums along.

As I come back to the massage table, and look out at the pool, I also realize that it looks much different to Abbie than it does to us. For a long time it looked like a cemetery to me...the place where our "happily ever after" died. These days I can watch the boys splash and play with friends without sadness gripping my heart - so perhaps we're back to neutral. But, for Abbie, I think she looks at it as the beautiful turquoise door that lead to her grand adventure with God. I'm so glad she came back to take the rest of us along with her!

I will try to post as soon as I can after the surgery. Your prayers are powerful and sustain us more than you know!

Wednesday, October 01, 2008

The Face of the Enemy

For so long we heard that brain cells cannot regenerate. False. They do it all the time in petrie dishes. Why not in injured brains of living people? Behold that bright, colorful picture above, and don't be fooled by the rainbow...this is the enemy of every person striving to recover function and potential after a brain injury. Meet the Nogo protein.

This protein, along with a few of his similar-minded friends are called "outgrowth inhibitors"; they tell injured cells not to regrow. They are the reason that precious stem cells don't seem to have much of an impact on recovery. We are loading our loved ones with millions of cells of potential, only we are putting them into an environment that will not allow them to develop. It's sort of like sitting in a Ferrari at a can imagine the possibilities, but if the light never changes color, that possibility is never a reality.

Lately, I've been fairly obsessed with this little devil, and my research has shown that as long as five years ago scientists were having success in disrupting the action of Nogo in the injured brains of rats, who exhibited functional gains as a result. I far down the road we are towards trials in primates and humans.

And, I wonder if you know that in this country there are:

-- Around 5.3 million people living with some form of disability from traumatic brain injury -- this figure does not take into account survivors of anoxic injury like Abbie.

-- 1 million people who are treated and released from an ER every year because of traumatic brain injury

-- 230, 000 people who are hospitalized annually, and survive

-- 50,000 people who die every year from TBI

By comparison, the American Cancer Society statistics show 184,450 new cases of breast cancer last year. While the American Heart Association reports that the most current data assessed shows 920,000 Myocardial Infarctions (heart attacks) in 2005. I wear pink ribbons gladly, and Ray sits on the board of the Heart, EVERY malady that affects people is important. But I wonder....where are the national spokesmen, women, and campaigns, the fundraising efforts, the legislation, and the well-funded research for the forgotten, invisible brain injury survivors and their families?

You know where they are? Focused on battles that seem winnable because the enemy has been defined: cancer cells, artery plaque...while brain injury has seemed a shadowy, one-way hallway where you don't even know there's an enemy, much less can you name and identify him.

As an Army officer I learned that to defeat an enemy, you must KNOW him, and know him well. I am encouraged by the research I see exposing the ways and means of Nogo. But, an Army also needs supplies, weapons, and support. We must frame our issue more appropriately, and more precisely in order to attain what is needed to win the battle on our particular front.

I have written a letter to the chairperson of the Brain Injury Association of America, Mr Joseph C. Richert, as well as the president of my state's chapter to encourage them to frame brain injury recovery as more than a shot in the dark, to define the challenges limiting recovery (name names!!) and to ask for research focusing on making the environment in the brain conducive to recovery. We now have someone to shoot at (not Mr. Richert, but Nogo!), and that makes all the difference. If you are a brain injury family, would you consider doing this as well?

Seeing a picture of Nogo gave me great hope, not only because I can envision the scientific victory, but because this very day, I can now pray very specifically. God need not wait for elegantly-designed studies and new techniques...he could strike Mr. Nogo dead in his tracks right now. Will you join me in praying for that...for Nogo to be corralled back to his normal function in the body?

I fervently believe that especially in the body of a child, whose primary urge is to grow, if we could find a way to turn that light from red to green, those little axons would sprout like spring wildflowers.

Speaking of blossoms, my little Blooming Flower and I have been enjoying these unexpected cast-free days by running together each morning. Abbie gives me encouragement and joy while surveying the dogs, birds and flowers along the way. I found out last weekend she also gives me extra training, when I went running without her. I am so used to pushing her stroller that probably weighs 65 pounds with her, the suction machine, and some counter-balance dumbbells in the foot wells, that it doesn't feel like effort to me. As I came to a hill last Saturday I fell in behind a musclebound jock-dude, thinking he would set a good pace. Five steps later I had to pass him, as he seemed to be plodding along while I fairly flew to the top. I felt so bad for him, getting smoked by a girl and all, that I thought perhaps I should explain that I'd been trained by the best:)!

As I continued my run I realized that hill was just like life. When God instructed us to "run the race marked out" for us, he didn't mean for it to be burden-free, for it's that additional weight that makes us strong, builds our character, and conforms us to His image. There will come a day, however, when we run freely, the burdens permanently lifted in the blink of an eye. We will rejoice in what we carried, for it will have given birth to the wings on our feet. If my Saturday run was a foretaste, I cannot wait! When you see me, I will be the one sprinting to the top of the hill with a goofy smile, trying to catch that rascally girl in front of me.