By the Light of the IV Infuser

I looked at the calendar this morning. I can hardly believe it was three weeks ago today that we began this journey with Josiah. It feels like months or longer. Overall, I have really been doing great as I watch him return to himself, gain strength, and provide those precious moments that make me burst inside at the joy he brings. But I have my moments, too, when it all catches up with me, when I weep at the "what ifs" that race through my thoughts, when the weight of it all seems to sit more heavily on me than I am capable of bearing, when I wonder or worry about the long-term affects on his health.

Spending four long nights in a hospital gives one plenty of opportunity to think. It's dangerous. Our thoughts can stray to horrible things, if we let them. The overhead lights were dimmed as low as they would go, and the brightest light by which I could see the outline of my son's chest rise and fall with each breath was the IV infuser that trickled away the smallest amounts of fluid to treat and nourish his suffering little body. It was quiet, and I ached with love for my little boy, feeling like the small moments of time that I held him I couldn't hold him close enough. But I can still clearly see that place where I sat (it was only nine days ago, after all), with the glaring light of the IV machine, and it surprises me to think of how I felt peace. A feeling of peace that I should not have possessed as I sat alone, surrounded by all those machines.

I really thought that November 12 to 16, 2008 would go down in my history book as one of the lowest times of my life. Instead, I see it as one of the most hopeful and peaceful. I can't explain it, except for the fact that I continue to talk to people who tell me they have been praying. Not just our church, our friends, our family, but also their churches, their friends, their families. Your prayers sustained us in that time, and continue to do so.

I spent time in that chair beside Joey's dimly-lit bed in earnest prayer for his life. I also spent a lot of time thanking God for so many things: for the prayers of countless people through which God gave us peace and hope; for the selfless acts of blood donors whose refined antibodies now course through my son's body and have brought him healing; for living just four miles from one of the top children's hospitals in the nation; for that feeling in my gut that told me he needed serious help; for living in an age where rare diseases can be identified and treated; for the knowledge God has given us about the bodies he has created for us, and the doctors and nurses who administer care, especially through the long hours of the night; for the volunteers who add such loving touches as a soft fleece blanket to lay my baby on, and teddy bears to cheer him; for a strong marriage and a wonderful partner in life who kept our family running in my absense from home; for a daughter whose understanding went far beyond her 4 1/2 years and whose countenance and obedience are proof in themselves of the power of prayer; for the opportunity to once again cherish each smile, giggle, and snuggle of our sweet little boy; and for knowing now more than ever that each day we have with our children is truly a gift.

Every day of this past week has been a day of Thanksgiving for us. My hope is that it won't stop after Thursday comes and goes, but that we will continue to offer up prayers of thanks to God for all He so graciously gives us. Especially His peace.

Worth it

Eight days at home of worrying, waiting, wondering...
Seven hours in the ER of anguish, answers, acceptance...
Five days in the hospital of pain, patience, prayer...
One week at home of rest, recovery, realizing I can't do this alone...

And seeing this yesterday...

...has made it all worth it.

The Road to Recovery

Here is an update on how Josiah is doing this week since we arrived back at home...

EATING: He's eating like a champ! Just this morning he ate TWO whole waffles! When we weighed him at yesterday's doctor visit, he had gained back 9 of at least 17 ounces he lost during the week he was sick before he was hospitalized. He still seems to have some trust issues with sippy cups, but does continue to nurse well.

SLEEPING: Last night was our best night so far since we came home on Sunday. He had been waking up often and sometimes staying awake for as much as three hours in the middle of the night. His time in the hospital was very disruptive to his routine, to say the least, as they woke him up to administer medicine or take his vitals numerous times and at odd hours. Then it would be up to me to get him back to sleep, which would sometimes take two hours or more. So it will take some time to return to normal patterns, but we are seeing good progress here.

EXTERNALLY: His rash is all but gone! It isn't visible any more, but there are just a few places where his skin still feels a little rough. It doesn't seem to bother him at all, which is the best part. We are, however, beginning to see the skin at his fingertips peeling, which is an expected part of the course of Kawasaki's. It's like blistered skin, though it doesn't seem to hurt or really affect him at all, other than catching his curiosity.

INTERNALLY: His blood work from yesterday's follow-up appointment shows some improvement. One inflammation marker is still up, which could even be due to the fact that he has cut three new teeth in the past week (yikes!), but we just don't know. And his platelets are still high, which is in part why we have to continue giving him aspirin. We will have to repeat the blood labs weekly until everything returns to normal.

PERSONALITY: Each day we see more of our precious Josiah returning. He is babbling (though still hoarse from a swollen throat and all that crying and moaning for days on end), and he is smiling and giggling! Last night he was bopping to the beat of the music we were listening to. He has remembered all the signs he uses to communicate. He continues to be clingy and skeptical of any unfamiliar face, but we are told that his irritability will continue for several weeks at least.

MOBILITY: Joey is crawling again, but usually only a few 'steps' at a time before he gets frustrated and lays down on the floor. He seems to be favoring his left leg, though it is unclear to us why that would be. He stood on his own last night before his bath for a couple of wobbly minutes, but only took a few walking steps while being supported. We're confident that walking will come as he continues to gain his strength back.

We are so grateful for the many people who have lovingly provided for our needs so we can focus on the needs of our son, and who continue to lift Josiah and our family in prayer! Our strength and peace come from the Lord (Psalm 29:11).

Josiah's Journey

I just spent my fourth—and what I hope will be my last ever—night at The Children's Hospital.

For friends and family who have been keeping up with us through Facebook and phone calls, this entry is a recap. (Believe it or not, it’s an abbreviated version!) If you’ve only read my previous blog post, you know that Josiah, my 15-month-old son, had been sick with a fever since Tuesday, November 4th. After I wrote that blog entry I called our pediatrician’s office and spoke with a nurse who tried to assure me that “sometimes these things take time.”

My gut was telling me that "time" was not our answer. But I gave it one more day.

On Wednesday, I called and insisted that he be seen again. This time I made an appointment with Dr. R, whom we really like and has seen Josiah for most of his well visits. He took one look at my sick baby and I could tell that his gut and my gut were on the same track. He observed his cherry red, cracked lips and the faint rash on his puffy hands and feet and talked through some possibilities. He listened to me talk about how he had stopped eating, stopped communicating with sign language, stopped sucking his thumb or using his hands for anything at all, stopped walking or even sitting, and how he seemed to grow more stiff and pain-filled each time I moved him. He was reverting to infancy and it was crushing me to watch it happen. Instead of jumping to a new diagnosis, he suggested that we draw some blood and find out for sure whether this was viral or bacterial, and then we could move on.

Here, in my version of a nutshell, is what happened next:

At 3:30 Dr. R called me at home to say his blood count did not indicate that his illness was either viral or bacterial, and he urged me to take him to The Children’s Hospital for more tests. Right away. This was obviously devastating and scary, but I did my best to move forward in a hurry. Through my teary eyes I remember grabbing a bottle of water, a granola bar, my cell phone charger, and three diapers. I dropped Lucy at a friend’s house, thinking it might be a few hours...

The next few hours seemed like an eternity as they took the history of his eight-day fever and examined him repeatedly. I was grateful that John got my messages during his work meetings and was able to join us shortly after we had arrived at the hospital.

The blood draw itself was nearly the end of me. He was so dehydrated that finding a vein on his little body took repeated attempts by five different people over the course of an hour and a half. After two blown veins they went to their back-up plan and inserted a tube down through his nose into his stomach and began to push fluids to start rehydrating him (as he would take nothing by mouth). But in his weakened state, I didn’t even have to hold him down through it all. He simply laid there and moaned and looked at me with his pleading eyes. I was holding it together for his sake, but inside I was screaming “Dear God! Please let this one work!”

Even before the blood results were back, the doctors were preparing us for what they believed his diagnosis would be, which is called Kawasaki Disease. There is no single test for it. His extended fever, red and cracked lips, swollen hands and feet, and bloodshot eyes presented a good case for it, as well as the fact that there was no other reason for these symptoms. When his blood work came back showing elevated inflammation markers, all these factors came together and he presented as a classic textbook case of Kawasaki’s. We were relieved to know he would not be transferred downtown to the main Children’s Hospital campus, yet our doctors would work closely with the Infectious Disease department there to proceed with his care.

My baby boy was being admitted to the hospital.

Kawasaki Disease has no known cause. It was identified in the 1960s by a Japanese doctor, but it continues to remain much of a mystery in spite of ongoing research. It’s not viral. It’s not bacterial. And it’s not contagious. Children with Kawasaki’s are very inflamed on the outside of their bodies, and inflammation also occurs on the inside of the body, particularly in the blood vessels.

Treatment of Kawasaki’s involves at least one 12-hour-long infusion of intravenous immunoglobulin (IVIG), which would begin once he was well-hydrated. Aspirin is also used to protect the heart. They transferred us to a private room and hooked him up to a pulse oxygen monitor on his big toe, a blood pressure cuff on his opposite calf, heart and respiratory monitors on his chest and belly, and of course his whole left arm was taped up and immobilized with the IV in what we came to call “the club.” They began the IVIG drip at 11:00 pm, checking his vitals every 15 minutes at first, then every hour through the night and next morning. John and I agreed that he would go home to be with Lucy and I would stay with Joey to be able to nurse him as often as he needed. It was a long night.

By Thursday morning we saw some improvement. He was not as miserable and was more alert, but still had no energy to do more than just lie there on his back and cry with every breath that he was awake for, though he did begin to toss his head back and forth causing his hair to become like one big dreadlock knot. They were giving him Benadryl for the rash that was growing worse, and it also helped keep him calm and get some much-needed sleep.

One major concern with Kawasaki’s is that the inflammation in the child’s body will cause damage to the heart or arteries. They performed an Echocardiogram that morning, which took twice as long as the usual 40 minutes because Josiah was agitated, so they ordered that he be sedated to complete the examination of his heart. They also repeated the blood work to see if the medication was working. We were greatly relieved to get the results back from both of those tests that showed no damage to his heart and that indeed he was improving internally.

Thursday felt like a very long day, knowing his tests showed improvement, but seeing very little external evidence. His rash, in fact, was worse than when we arrived, as it now covered his arms and legs. One sign of encouragement we saw was that he was beginning to sleep on his belly again. That night was a bit better, and we both got about five hours of sleep.

On Friday he began to sit up on his own for the first time in over a week. Then, as if that weren’t enough, he started to grasp things with his right hand and move them! (His left hand was still taped up with the IV.) We added a strip of waffle to the mix of objects and he picked it up and took a bite—his first solid food in 10 days! To cap off the day, when I laid him down to sleep in the evening, he began to suck his thumb—again, a first in five or six days! We were thrilled to see such good signs of his return to normalcy.

Saturday’s blood work showed improvement again, and we started to talk about going home on Sunday. His rash was continuing to spread or fill in on his limbs, but it looked “less angry,” as our doctor put it, and it seemed to be bothering him less as it grew more pale. The determining factor for our release seemed to be that he would be able to stay hydrated, but he was still not drinking from a sippy cup, straw, or bottle. I was thankful that he was, however, continuing to nurse. They removed his IV in the afternoon—the last of the lines that tethered him to his hospital crib.

This morning Joey finally began to drink on his own. It wasn’t much, but they were confident it showed he was greatly improved and well enough to go home. We will have to return for a follow-up appointment with the cardiologist, as well as monitoring his blood until his counts return to normal.

Despite this being one of the longest and hardest weeks of my life, there are so many bright spots and so many things we have to be thankful for… doctors Amanda and Ryan at the hospital who knew Kawasaki Syndrome and made an accurate diagnosis… an angel named Tina who was successful in starting Josiah’s IV… being allowed to stay close to home and having excellent care… Darlene, our overnight nurse on our first two nights who was so gentle and compassionate and knowledgeable about Kawasaki’s, and who brought us a soft fleece blanket for Joey to sleep on and teddy bears for him and for Lucy… friends and family who visited and brought us food and kept us company… the Gildehaus, Gold, and Monroe families who kept Lucy occupied and entertained for whole days at a time… our friend DD who stayed with Lucy in the evenings so John could come back to the hospital… YFCI who let John out of his very important board meetings to focus on Joey… and the dozens and dozens of people praying for us and following our journey through updates on Facebook, phone calls, and messages—God clearly provided the strength for us to make it through this week!

We arrived home this afternoon, and we know that there is still a long road of recovery ahead of us. Joey is gaining strength, but his movements are still slow and labored. We are told to expect that he will be easily agitated and extra irritable as his body heals in these next few weeks. But we are seeing much more of ‘our Joey’ each hour, and for that we are praising God!

Thanks for sharing in this journey with us. I'm sure I'll be posting more thoughts and reports on Josiah's progress in the days and weeks to come...

From the Sick House

What a week! My poor little guy has been down -- and I mean down -- with a fever since last Tuesday. After Lucy had the stomach flu the week before, we were all looking forward to a little more contact with other human beings, but instead we've been holed up here at home. Again.

After a doctor visit on Thursday morning, we started him on antibiotics for what the doc said looked like a mild ear infection. I've never had to give either of my kids antibiotics, and when they do get sick it's usually a short-lived virus and not bad enough for a trip to the pediatrician. It goes against my principle to use antibiotics unless I know for sure it's a bacterial infection. The doctor used the word "might," and so I was skeptical. But that afternoon I watched Joey more carefully and noticed him rubbing his ears with his fists when he cried, so we began to give the medicine a chance. I think I at least expected some gradual improvement after that. He did stop crying as much, and stopped rubbing his ears, so I'm choosing to believe the diagnosis. But the fever and the sleeping continue on. I can't help but thing there's something more to this. A virus, perhaps, and I just need to be patient...

It's hard to see my typically active -- and I mean active -- 15-month-old just sleeping. All. Day. Long. It's like having an infant again. We've seen tiny little improvements (his eyes open a little longer, and some head nodding and signing to ask for water), but overall he's just not getting better yet. He wakes up for about 5 minutes every hour or two, cries a little, drinks some water, or sometimes he will nurse, and then he's out again. I think it's just as hard on me, just to see him like this and feel completely powerless to do anything.

If you believe in the power of prayer, would you remember my sweet Josiah the next time you pray?

(And a special thanks to my good helper, Lucy, for being on her best behavior this week! Sometimes it takes a 'crisis' to bring out the best in us...)

Misplaced Confidence

The following is a blog post from a few days ago by a man in the southern African nation of Zambia. When an old college friend passed this link along to me today, I was amazed at how similar I felt, the day after our nation's presidential election. For me, there is neither joy nor sorrow in the outcome, but more of a reality check that no matter how good or bad the leader of our nation is, has been, or will be, our true hope still lies only in Christ.

Here is what he has to say:

Yesterday, I cast my vote in the unscheduled 2008 presidential election. As a citizen of my country, I am now waiting patiently to hear what the collective decision of the people of Zambia is. In a few days time, we shall have a new president. He will either be the person I voted for or someone else – ouch! As I await the final verdict of the counting that has already begun, I must remind myself, as I have done so many times before, that the future of Zambia does not really lie in the ballot box but in the sovereignty of God and in the gospel of the Lord Jesus Christ. Due to space, I will be very brief in explaining what I mean.

It is true that having “a devil on the throne” will take the nation backwards economically and socially. It will mean that levels of corruption that were beginning to go down will soar once again. It will mean that many investors will withdraw from the country and a downward economic spiral will commence. It will mean that the civil liberties that we were beginning to experience in the nation will slowly get eroded. Yes, it will mean that and much, much more. No one wants that to happen and hence the sense of grief and despair among those who know better if a cheat and fraudster ends up in Plot One.

It is equally true to say that having a godly man of integrity on the throne can only be a blessing to the nation. It would mean greater investor confidence, more fiscal discipline in the public sector and more development for our nation. It would mean a better ambience for the church to carry out its divine mandate of evangelism and missions. So, it only makes sense that if there is such a person among the candidates vying for Plot One, then the hopes of the godly are that in a few days time such a person will be sworn in as Zambia’s fourth president.

I can understand all that. However, we need to realise that ultimately the person who will be our president would have been chosen by God before time began. God is totally sovereign in this matter. He does not only choose the godly but even the ungodly in order to achieve his purpose at that time in history. Sometimes, he wants to bless a people and he gives them a righteous leader. At other times, he wants to judge a people and he gives them a ruler who will break their backs. Yet, this is never out of malice or caprice. At the centre of God’s purpose is the extension of his kingdom through the gospel. You will often find meaning to God’s acts in history by looking at the state of the church at that time. So, whether God gives us a good or bad president will depend on what he wants to do with us as his people today.

We also need to understand that for us to have better leaders in the nation the church must be faithful in proclaiming the gospel. The problem in the world is not bad economic policies but bad hearts and these can only be changed by the gospel, which is the power of God for the salvation of those who believe (Romans 1:16). The gospel has always been the vanguard of civilization and true human dignity. It changes lives in the grassroots of society and, since rulers come from there, in due season it gives us rulers with pure hearts. It is the failure to realize this that makes Christians excited about a new leader coming into power even when the state of the church still leaves much to be desired. That is totally misplaced confidence. Our excitement, rather, should be when a purer gospel finds its way into the homes of our land. That alone is the true hope of Zambia because it produces a righteous people.

Does that mean we were wrong to vote? No, I think we should. God uses our vote to bring whom he pleases to Plot One. But we cheat ourselves if we think that there is a political leader who will bring utopia to our country. Politicians will promise us heaven, but they know that the promises they make are merely to woo voters so that they can get into their much-coveted positions of power. Once they get what they want, history will only repeat itself! Our hope lies in the gospel alone. Christians, even after casting our votes and waiting with bated breath for our new president to be announced, let us get busy with real gospel endeavours, praying that through them God will extend his kingdom in Zambia and even beyond. That is where the future of Zambia lies.

By Conrad Mbewe
Lusaka, Zambia

Little Red and the Big Bad Wolf

A glimpse for you of our Halloween fun yesterday...

Lucy enjoyed her first trick-or-treat experience as an adorable Little Red Riding Hood. We accompanied her up and down the street and a neighboring cul-du-sac, toting the Big Bad Wolf in the little red wagon, who sat contentedly watching and squishing a Crunch bar in his warm hands the entire time. Mmmmm.


Love our pumpkin? With the stomach flu running rampant in our house this week, we neither had the time nor the guts (pun intended) to carve up this pretty specimen. So I got creative with an old lampshade, a square of black fabric, construction paper and some toothpicks. Voila.


I don't like the scary side of Halloween, and I used to say that I wouldn't have my kids dress up, or make a big deal of it. But this year there was no escape from the decorations in the neighborhood, the kids programs on TV (even on PBS), and the costumes and questions everywhere we went. Lucy knew it was coming, so we made the best of it, trying to emphasize the celebration of harvest time and reading good books about pumpkins. (Two of my favs are The Pumpkin Patch Parable by Liz Curtis Higgs, and Too Many Pumpkins by Linda White.) She definitely didn't like the scary stuff, and even avoided going to a few doors where the fake spiders were larger than she was. But overall it was a confidence booster for her as she met neighbors, grew bold in her two scripted lines ("Trick-or-treat" and "Thank you!"), and lovingly shared her loot with her brother.