God plans ahead

Throughout this whole ordeal, we have had good days and bad days. A hill followed by a valley, good news followed by bad news, hopeful, positive moments followed by disappointment…and then more positive moments.

Today, dear friends stopped by and we were blessed unexpectedly by them. We sat on the hospital bed together after they left and wept at their generosity. Their kindness was a direct sign from God that His plan is secure, even though our plans fail. We are unsure of the future; He is not.

Later this evening, after Wes fell asleep, I noticed his scar seemed to be swollen a bit. Yes, it’s just me. No nurse or doctor has confirmed my observation, but let’s be real: if anyone knows to the detail what my husband’s head should look like, it is I. My gut tells me that in the morning, the doctors will take one look at him and say, “yep, you’re gonna need a shunt.” More surgery, more time in the hospital, more time away from the kids. This is a heart-wrenching thought.

I have felt repeatedly through this process that I’ve had enough, that I don’t want to face this anymore, that the end of this struggle must be near–I can’t handle it much longer.

But I will look at the pattern, and remember the grace of God.

The surgery to remove the tumor went without a hitch. It was a huge success, with both teams (ENT and Neurosurgery) extremely proud of their work and confident of the future. In the words of Dr Thompson, it was a ‘formidable’ tumor. Very large, and could have done great damage to the brain stem and facial nerve. But it didn’t.

God preserved his life. Beautifully, miraculously. This was an unspeakable relief. Two weeks of improvement and increasing strength followed. Then after improvement and relief came disappointment, which we suffered when meningitis set in.

Recovery, setback. Blessings, struggles. Plenty, poverty. Gladness, sorrow.

See the pattern? 🙂

The God who knows the end from the beginning prepares us for future trials by strengthening us today. Little do we know as spiritual children what great need we will have to fall on the Rock, to return to the altar we built the day the Holy Ghost baptized us. The unspeakable joy that washes over a new soul reborn is the same which will carry him through the difficulties of life, when everything stable will be threatened. It will be his strength.

God, the ever loving, everlasting Father who loves His children more than anyone, knows where our road will lead, so he packs in our little travel bag just what we need to get us to our Destination.

This Holy Ghost, this Spirit of Christ, the ‘foretaste of glory divine,’ is the meat to sustain us until we reach That Other Shore. Oh, that we would carry it with reverence, protecting it, cherishing it, nurturing it! It is our most valuable possession, and our only hope.

Jesus spoke to His disciples in John 14, telling them He would be leaving soon. He began the chapter with the promise “I go to prepare a place for you.” The value of such a promise is unknown until one is forced to cling to it in desperate fervor. He knew they would later be tested, and would need to remember His words. So He followed with another promise: “I will not leave you comfortless: I will come to you…the Comforter, which is the Holy Ghost, whom the Father will send in my name, he shall teach you all things, and bring all things to your remembrance, whatsoever I have said unto you. Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.”

Who can appreciate peace but they who have been shaken by chaos and tumult? What is the value of comfort unless it be compared to one’s struggle, pain, and sorrow?

Soak in His presence today! Feast at His banquet table! Eat the Word. Accept His strength, surrendering all. I beg you, invest in the full armor of God. The day is coming when you will need it.

And above all, remember the Promise, that He “hath begotten us again unto a lively hopeTo an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you” (1 Peter 1:3,4).

Everybody’s hurting

I was in the hospital cafeteria last night, standing in line behind a young couple who were paying for their pile of a la carte food: two salads, a container of chicken fingers (undoubtedly meant to split and top their salads–something Wes and I would do), and a carton of Ben & Jerry’s ice cream. They were silent as he fumbled with his wallet and a bag to hold it all, and she helped carry their things.

I thought maybe they might be less personable than the average person, not inclined to chat with the cashier or meet eyes with anyone else in line, though I may have detected a faint smile as she glanced back at me. I found my mind wandering, judging, assuming. Some people just aren’t that outwardly friendly, I guess…

Then I noticed a band around her wrist, somewhat worn, of the sort of material from which the express envelopes at the post office are made. Waterproof and long-lasting. It was white, and was marked in large, black letters: PG.

I felt conviction hit like a blow to the gut: Parental Guardian.

Vanderbilt Hospital, in which my husband is recovering, shares a cafeteria with the Children’s Hospital.

As I walked back toward the elevator, I passed a mother walking with her young daughter, explaining “…and Daddy’s scars will heal just like that…” With “scars”, she drew a line down her chest.

I thought back to a moment several weeks ago when we were in Gatlinburg with my mom and our kids, when Wes still had his staples in and was feeling pretty well. It was an eventful day for him, a welcome change from our bedroom, where he’d remained since the surgery.

Crossing the street in this tourist trap, I noted the halting, quivering gait of a middle-aged man who walked with his arm around his wife. Parkinson’s. They looked happy. Relaxed, in spite of his obvious impairment. I felt a wrenching, twisting pain in my chest.

There is no escape from life and its onslaught of tests, twists, turns, and general woes. All have sinned, and all are subject to this frail, human condition. If we can bear it without losing hope, trusting the God who has prepared for us a Place without tears, obeying Him in in spite of –while in the midst of– the difficulties that challenge our faith, then we have won. This is no small battle, and no one should fight it alone.

For the man with Parkinson’s, the child whose parents quietly ate their salad and ice cream in the cafeteria that night, and the innumerable others who struggle tonight without answers, I pray.

It’s a supernatural peace that can exist simultaneously with anguish and unanswered questions. It is the pleading, bleeding heart whose cherished object is threatened that knows real love, understands the joy of simple life, and pines for a ‘normal day.’ For all those who suffer now, I pray that their hearts would be pliable in the Hand of the Potter, who has purpose in everything He does, and who suffers with us through every ache.

I pray that my own heart would be sensitive enough to feel the weight of another’s burden, and help him to bear it. If God does not remove the source of the pain, then there must be something He intends to do. I pray I am able to follow His lead and to ease the pain of those around me who are desperate for relief.

Thanksgiving 2009

Hi. Last time we talked, Wes was in the hospital, recovering from meningitis.

Now, Wes is in the hospital, waiting for the spinal fluid leak to heal and the swelling to go down.

“Really? Three weeks later? A month-and-a-half past surgery??” you ask. Yes, and believe me: I am just as incredulous as you.

And now I shall share with you our timeline:

October 30. Wes has staples removed, develops meningitis, spends a week in the hospital with ridiculous pain and super-mega-antibiotics. My mom, who came to help us on October 13, gets ready to leave on the 5th. Dad drives down from Wisconsin to pick her up.

November 6.
We go home with high hopes and a week’s worth of IV meds to kill what’s left of the bug in his brain. Swelling at the incision site seems to be improving.

November 11.
Wes’ good friend, Troy, is killed in a car accident. A groomsman in our wedding, he is a young husband and father, loved by all who know him. This tragedy adds to the difficulty and pain of recovery. A very hard day for Wes (not to mention for Troy’s wife, Amy, and their son Tanner, who was in the car with his dad and suffered horrific injuries. We still pray for Amy and Tanner, for strength, peace, and complete healing in Jesus’ name!).

November 14.
We finish the antibiotics, Wes is feeling pretty good, life seems to be inching toward ‘normal’.

November 15. Sunday. We go to church for the first time since the surgery–it’s wonderful to be back, albeit with a swollen head, slower gait, and PICC line still in his arm.

We go home for the afternoon, he takes it slow, and we head to Troy’s funeral. It is packed, and we see many good friends from far and near who have been praying for us. Such a sad occasion, but so good to see our friends. As we sit in the sanctuary waiting for the funeral to start, Wes feels a trickle down his neck (still wearing the bandage over his incision). We go outside to find out that it is in fact his incision leaking cerebrospinal fluid, which is not supposed to happen, and we head home immediately and call the doctor.

We are advised to keep it dry and clean and to see doc at 7:30 the following morning (no one would perform surgery on Sunday night, anyway, if we went to the ER). Wes is not in extreme pain, so we lay low for the rest of the evening. We are disappointed that we have to miss the funeral.

November 16.
The doctor (Hauge, in Knoxville) determines we need to fix the leak. Wes has to forgo eating and drinking until 5pm, when surgery starts.

A long day of waiting is followed by a short operation (less than half an hour), and a neat little set of sutures now complements his previous incision. During the surgery, the excess fluid that had remained under the incision was released, and our hope was that it would not re-accumulate. A pressure bandage wrapped around his head is added to prevent this. We are excited to see a flat place where the skin had bulged out from the side of his head, and are hopeful that this may be the end of our brain surgery chapter. 🙂

No dice. By the time we arrive home, about two-and-a-half hours past surgery, the swelling has returned in full force.

This is a low point for us. It has now been a month since the tumor was removed, and by now, we had expected life to be a little easier. But recovery seems to drag on and on. It seems like we spent the entire day waiting for an unsuccessful outcome, and things are yet unresolved.

November 17-22. We take meticulous care of the incision, changing the dressing daily, hoping and praying that nothing else goes wrong. The swelling seems to go down a bit here and there (though review of pictures and video during that time now reveals that no change really occurred).

November 22.
We go to church Sunday morning, Wes testifies with his head wrap, glad to be in the service. We are so thankful to be in the presence of God. There’s no better therapy! Visiting evangelist, Jordan Stumbo, preaches “The Power of Perspective.”

At the end of service, Wes notices his bandage feels wet. Uh oh. We go home, inspect the incision. Just a little drop appears at the bottom knot of the sutures. It seems to have stopped. We proceed with our day, he naps, I take the kids to the evening service. After church, we find a more significant leak that continues through the night.

November 23. Monday. A call to the (Vandy) doctor directs us to the ER, but since Wes isn’t in serious pain, we decide to see the local neurosurgeon instead and thereafter head to Nashville as planned (have an appointment with our Vandy ENT surgeon early Tuesday morning). We find a lovely room on Priceline for a steal. Praise God. 🙂

November 24.
Tuesday, at Vanderbilt. The leak is profuse, the doctors consult with one another and decide to admit Wes and install a drain to take pressure off his head and redirect it out of his body through a little tube in his back into a bag at his side. A nifty contraption controlled by gravity, the drain measures how much CSF is coming out over time. He now sports a higher-octane pressure bandage around his head to provide resistance to the CSF that wants to push out through the incision.

November 25. A boring day in the hospital. Drip, drip, drip goes the drain. Click, click goes the IV pump. The soft, muffled whirr of air circulation systems. And that is all.

November 26.
Thanksgiving day! We had the company of dear friends for a few minutes this afternoon, and it was so therapeutic. It’s a bittersweet irony to know NYC is taking place in the same city at the same time; it enables friends to come and see us, like our Knoxville friends, and the Ritcheys, who probably wouldn’t be able to come to Nashville just to see Wes, but who were able to stop by…yet we’d much rather be in the services.

All things considered, things seem to be improving: it’s apparent that under the bandage, the swelling has gone down at least some, if not all (Please, Lord, let it be gone for good!). Tomorrow, we find out if we need further surgery, which will involve a permanent internal drain for excess fluid to leave the brain and the body through the stomach. Hopefully not. Hopefully, we will see that his head is healing, that the fluid has successfully been diverted, and that no more surgery will be needed.

Praying this in Jesus’ name. Thanks to all who are praying with us. Happy Thanksgiving!

Post-Surgery…Part II

Okay, so the last time I posted, we were a week post-surgery and doing great, all things considered.

I guess you could say the same now, though the “things considered” are a bit different.

Allow me to elaborate:

On Friday morning of last week, we went to get Wes’ staples removed. He was doing well, and felt almost normal. 😉 After an exam by the neurosurgery Nurse Practictioner, his mom, the nurse, had the pleasure of removing the staples from his incisions: the one behind his ear from surgery, and the one in his abdomen where fat was removed to plug the hole in his skull (neat, huh?).

When removed, the staples left neat little holes in a neat little row along the cut. As the staples came out, from a few of these holes ran a little stream of clear liquid which dripped down his neck. This was a bit startling, though not completely abnormal. The possibilities were either that the tissue was ‘weeping’ while healing, or that it was cerebrospinal fluid leaking from inside the skull. It was not a huge amount–a tablespoon, maybe, and then it stopped. The educated theory was that it was not CSF, and the precaution was given to call if a severe headache occurred. We left to walk a little around the mall, then go home.

While at the mall, the dull (normal) headache Wes had had earlier now increased steadily, though not unbearably.

What we did not know at this point was that bacteria had entered his brain from the outside world through the cerebrospinal fluid that had leaked. In twenty minutes, this bacteria doubles. In two hours, it increases sixty-four fold.

This is the kind of bacteria that can kill a person within hours.

After a few minutes at the mall, feeling a bit more tired and in a bit more pain, Wes took two Tylenol and we headed for home.

Within an hour of arriving home, his pain was more noticeable. He took a half pill of a stronger medication given by the doctor. This made no difference. As time progressed, his pain increased to a screaming ‘9 out of 10’ (he reserves 10 for dismemberment and mortal wounds), and he couldn’t stand light, couldn’t move, couldn’t talk.

I called our local neurosurgeon, who prescribed a migraine medicine. This did not work, and by 3:30, I was on the phone with Vanderbilt. They advised that this was definitely not normal, and that if his pain had not decreased in an hour, to go to the ER.

At 4:40, we were headed to the ER. There, they did a spinal tap (lumbar puncture) to start a culture on spinal fluid (to determine whether it was an infection or a CSF leak) and gave him morphine to manage the pain.
The morphine made no difference.

At this point, the doctors had told us it was either a CSF leak causing pressure and pain, or “infectious meningitis.” I now know the latter term really means “bacterial meningitis,” but doesn’t sound as foreboding.

is the irritation of the meninges, which are the membranes that cover the brain. This can be caused by surgery (chemical meningitis), a virus (viral meningitis), or bacteria (bacterial meningitis). The former two are temporary and need no treatment; the third can kill you quickly.

Wes was admitted to the CCU (Critical Care Unit), where they began administering antibiotics to prevent the progress of infection. His temperature wavered around 102 degrees. He was in tremendous pain, unable to bear noise above a whisper, and very lethargic. The skin behind his ear bulged out where the tissue had swollen.

For the next two days, his mom and I alternated our visits to see him during the strict hours of the CCU. We slept in the waiting room and prayed for some clear answers as to what had happened.

By the second day, his pain was somewhat under control and his fever had decreased a bit, so he was moved to his room on the fourth floor. He has remained there since, and has steadily–though slowly–improved.

His blood tests confirmed infection, though the spinal tap showed nothing conclusive as to the type of bacteria involved.

He continues on a strict regimen of two high-powered “broad spectrum” antobiotics, almost constantly administered by IV. Monday, he received a PICC line, a fancy contraption attached to his upper arm through which he gets his medicine (he now calls it his ‘bionic arm’). This kind of high-powered central line can last a year. It is through this line that he will continue to receive antibiotics at home for another week or two. Through this same line, blood can be drawn also. Good news for Wes, who at this point feels somewhat like a human pincushion. 🙂

It is a slow ascent back to normalcy, but every day he gets a bit better. We are so thankful for God’s hand of protection on us, for easing his pain, and for giving us great doctors, wonderful family, and a supportive church.

That’s all for now…thanks for reading, thanks for caring, and for praying for us. What a story!