Antibiotic Blues & Wounded Souls

With some balloons brought today

The Charmer's constant companions - keeping watch

Nineteen more days of 2400 mg of antibiotic a day.

Four times a day, The Charmer must drink a semi-sweet, funky-smelling cup of antibiotic cheer.  He tells us, we have to "kill the bad guys" in his leg...and we agree...but the impact of such high doses of antibiotic on a little guy's body, does cause concern.  Please pray for his body to withstand the high doses and that his stomach and digestive system are not compromised. 

He's had visitors come by to cheer him.  He's proud of the holes in his legs and loves to show them off.  He tells them all, with authority, "I'm gonna walk."

Some from the High School came to visit and bring some cheer

In other seasons of life, we have run like crazy people, day in and day out.  Now, we must settle down, observe a cautious pace, and walk this journey along side The Charmer.  There are many realizations that come upon me with this slower gait...more time to think and process...more time to write.

It brings compassion for those who deal with chronic illness.  I'm thinking of my dear friend back in the States who has dealt with chronic, debilitating illness and disease for years.  She has soldiered on with strength and has remarkably retained her compassion for others.  As we are now planning regular visits to the hospitals to see Shi-yu and Jin Jin, I'm reminded of the number of times I've seen this friend go beyond her pain and circumstance to advocate and love on others while she herself is confined to a hospital bed.  I hope to be sensitive to the needs of others around us who are dealing with hardship. It seems to make our load lighter when we can still see those around us, their needs, and strive to love them along the way.

Wherever we are in our lives, at work, at school, in the hospital, in government offices,  at service clubs, at the grocery store...people surround us.  People who are hurting and afraid.  Those of us who have the Hope that our Father brings are never empty-handed.  We have gifts to give.  We have light to share.

Often we see people begging here.  Tattered and torn, some owned by others...they are all marginalized by society.  They sometimes display a sign before them on the city sidewalk proclaiming their needs...money for medical care, transportation costs, food...we have been impressed at times to sit with them, to get involved, to inquire further about how we might help.  In some ways, those souls are easier to see, to identify.  They display it all...desperate for help.

Yet, wherever you find yourself reading this, you will brush up against hearts today that have just as dire needs, but because of different life circumstances, they are able to conceal those needs from the passers-by.   However, we have the sensitivity of the Spirit who can reveal those in need to us.  I know at times, I have been touched by awareness of the need, but have continued on because I feared it too difficult or uncomfortable to reach out.  I must be willing to stop for the one before me, to do, to offer what I can, to meet them where they are.  To share this Hope I have, and to bless them, to bless them in His name. 

The Equalizer

Take human beings, introduce to them a health crisis in their child, compel them to live and breathe for days the hospital environment...and you notice an interesting fact...The Hospital is the great Equalizer.

I have been feeling a bit discouraged, more than discouraged...disheartened, by the many struggles we are party to, where families are deciding whether or not to fight for their children.  Due to incomprehensibly complex factors, families here who have a child born with special needs, often face a nearly unthinkable choice...whether or not to fight for their child or to rather choose the soul-scarring option to walk away.  Too often I know that the decision is made not to treat the child.  Too often the family believes they have no other choice than to abandon.

Each and every story that we know about leaves a wound on our hearts.  I hadn't realized how heavy the burden of this knowledge had grown.  It was not until our recent hospitalization with The Charmer that I felt an infusion of hope and encouragement...evidence that there are those around us who choose to fight for their children...to do all they can to preserve their lives. 

Shi-yu's parents have spent months and thousands of dollars to fight for her.  The well documented gender bias for male offspring in this part of the world would leave many girls at risk.  Their families, unwilling or unable to invest in the costly treatment for a daughter.  My local friends say, "that is a countryside problem...city people don't feel that way about girls."  And while that may be generally true, I have seen a new city-dwelling father turn away in shame before his male family members when his newborn, whisked out of the operating room and in into our waiting room, was perfunctorily announced to be a girl.  Yet, Shi-yu's parents have put their entire lives on hold and have spent likely most of their savings to treat her severe complications.  They care for her every need, spoon feed her, encourage her to try to stand and walk, wipe her brow, massage her aching stomach...she is loved.

Jin Jin's grandparents came to the hospital three days ahead of her surgery to admit her.  They didn't want to risk any illness, or that something might inhibit their granddaughter's access to the surgery she desperately needed.  They cooed and bounced, cleaned and fed, paced and cajoled their grandchild in a bleak hospital room...because they are fighting for her.  They are not well to do, yet they are investing everything to give Jin Jin a chance at a healthy life!  She is a baby girl.  I never saw her parents, not even on the day of surgery.  Perhaps they are busy working; they may be some of the scores who travel as migrant workers all over this huge nation?  Whatever the case, it is Jin Jin's grandparents who are giving their all to bless their granddaughter...she is loved.



There are other families that we bumped up against.  Others who are still on the edge, weighing the decision...to fight or to surrender their babies.  I pray that the tenacity of love and the allure of hope will shine forth from Shi-yu and Jin Jin's families and will enchant them...challenge those nervous parents to press on and fight for their babies.



We were just one of them.   We are of those who fight for the weaker ones...our children who depend on us to spend ourselves unreservedly to protect them.

In that place we are not foreigners.  We are parents.

In that place we are not rich or poor.  We are parents.

In that place we are not bound to our cultural identities.  We are parents.

In that place we are not different, but the same.  We are parents.

....In that place we are all in need of miracles...of deliverance...of the Comforter's touch...

Sprung.

Enjoying a Monkey brought as a gift to the hospital!

We are home tonight.

Quite exhausted but very, very grateful to be here.

The quick report and some photos...then there is much more to share in the coming days about The Charmer's revised surgical plan, Jin Jin's surgery, and our roomate (Shi Yu's) prognosis.

KEEP PRAYING.  We have come home, but the girls remain and face significant challenges in the days to come.  We will be visiting them regularly as something profound has bound us all together. 

The Charmer's blood work today showed that his ESR count which had been very high last Thursday in the high 80's, had dropped to just 14 today.  There will be quite a bit of visiting the hospital for x-rays, blood work-ups, and wound checks over the coming three weeks...but if we can maintain the regimen of high doses of oral anti-biotics, four times per day, we can pass the next 23 days of treatment...at home.

Pins have been removed from both legs now, and surgery delayed until all the staph infection is cleared.  This may put back our surgical plan more than 3 weeks.

Jin Jin's surgery today was successful!  She had a tumor on her spinal column and it appears that everything was removed, the neural sac is left intact, and I saw her wiggling her fingers and toes this evening.  It was a very, very difficult surgery according to the surgeon, but he was thrilled to report that she seems to have come through it very well! 

Bright-eyed before surgery - while visiting her room

This morning, when The Charmer and I awoke in the hospital we talked about Jin Jin's big day.  I picked him up, carried him to her room, and we sat with them for awhile.  Then we prayed for her, even The Charmer prayed for her, and encouraged the grandparents with the news that you were all praying for her too.  They were so, so touched.  It was beautiful.  They love their granddaughter intensely, and they are fighting for her!  We connected at a level that surprised me, and encouraged me deeply.  They are strict Hui Muslims, but still warmly welcomed our prayers. We promised them tonight as we left that we would all continue to pray for her recovery and that we'd be back to visit, soon.

The Charmer thought it a good idea to give Monkey to Jin Jin to "help her" through her surgery day

Our Prayer Team visiting in the early AM

Magpie and Jin Jin's Grandmother after surgery tonight

Brownie and Jin Jin's Grandfather by her post-op recovery bed

Awake!  After surgery!

Our Roommate was without fever yesterday and today!  This is a HUGE praise!  It was a significant turn around for her and one that delighted her doctors and her parents most of all.  She faces a long road, perhaps one to two months more of hospitalization to defeat the bone infection that had long to develop before she was admitted for treatment.

Her mother thanks you all for remembering her in prayer.  I told them about the blog and the writing about her situation...then I said, "you have people who know Jesus all over the world who are asking for Shi Yu's healing."  They were incredulous...and obviously touched.  It was a melancholy parting for us, with the knowledge that it will be a long time before she returns home to the life she knew before.  Her family has invested thousands of yuan to pay for her treatment.  I was astounded to learn that the original injury to her arm happened in May!  She has been nursing a growing bone infection for months...and has already been in our local hospital for a month before we met her!

Shi Yu and Brownie sit together during one of her brief episodes on being upright

 I learned some things while in the hospital these last five days.  I will write more about them tomorrow...but I am humbled by the things shown to me...and the way I was included.  These are precious souls who I know our Father loves deeply. How great to call upon our God along with you, and stand for healing and comfort for these who have perhaps never before been prayed for in their lives! Without being pressed together into the frantic and uncomfortable world of the local hospital, I would have never known them.  What a gift to stand with them, to pray for them, and to be received by them.

Must go to bed.  Truly exhausted and needing to feel the comfort of our bed.

More tomorrow.

Hospital Update and Prayer Requests

So sorry for no updates...the hospital is a wifi-free-zone.  Not a great thing.  I have quickly read emails from those who have written and we want to say THANK YOU!  We will try to respond as soon as possible and we can have access to wifi again.

I have just returned home to have my very first shower in three days (aren't you delighted that you can't smell through the internet?!)

The Charmer is likely going to be in the hospital for a full six days.  We are awaiting the development of the culture from the unfortunate-looking discharge from his leg.  Until then, we are giving him a heavy, every six hour, infusion of an antibiotic that kills staph.  It is most likely that he has a staph infection in the bone.  If the culture shows that it is not a drug-resistant strain of staph, then we may good to go home with oral antibiotics on Tuesday.  If it is more serious, we may be long-term boarders at the hospital.

He has stayed in generally good spirits, today has been more difficult though as his IV site blew a vein and it took nearly thirty minutes and many, many pokes, accompanied by wailing, sweating, and threats (on the part of the patient's mother :)  It appears that the massive swelling in his left leg is reducing, and today we were unable to express any pus from the wounds...all of which point to good results with the current choice of antibiotics!

He tells me that he hates doctors, that nurses should apologize to him for every discomfort, and that he demands that we hurry up and "shoot the bad guys livin' in (his) leg!"

Momma's $1 per night bed rental...yes...it is a comfortable as it looks!

We are in a room with a beautiful girl who has a serious, life-threatening bone infection.  She was riding her bike, she fell and broke her arm in three places.  She went to the hospital near her home where her family paid for surgery that has resulted in a horrendous, drug-resistant infection in her bone that has her raging with fever and in tremendous pain.  I have literally been praying against death in that room, hour by hour.  Today, it seems that she's taken a turn for the better!  Today she had a procedure done, in the room, that was another gruesome episode.  I saw her father, who along with her mother has never left her side, crying as he was unable to remain in the room.  I just wept and prayed.  They are so dear and we've had a great deal of time to talk to each other about meaningful matters.  It has been a great privilege to be there with them.

Our roomate, and her watchful parents

Another precious soul has entered our little hospital posse.  A nine-month old baby girl who was born with Spina Bifida.  This is the same congenital birth condition that The Charmer was born with.  This baby has use of her limbs fully, but, now her back has opened and she is leaking brain fluid.  She also has a tethered spinal chord (her nerves are bound to the spinal chord instead of moving freely.)

Jin Jin and Potato share a moment in our room

Her family is not wealthy, I think it is her grandparents who are staying with her awaiting her surgery on Monday morning.  Neurosurgery will be done.  This surgery can be life-altering if anything goes wrong.  PLEASE PRAY FOR JIN JIN's surgery.  She came into our room today with her family, enchanted us all, and we prayed for her body to have strength, healing, and protection.  It is a privilege to be able to pray for these precious families who it seems He has brought close to us, while we all face uncertain outcomes for our children, among a sea of faces who are also in inmates at the hospital.  Our surgeon told The Charmer today that he really needed our guy's help in praying for some of these serious cases...and he was glad that The Charmer was on the scene to do just that!

Visiting hour in our room today...12 Hs...Jin Jin's family...and our Roomate's family...the atmosphere was warm

Family support.

Packed room.

Auntie "Feryl" as Mr. Sunshine calls her...present to encourage The Charmer and bring some corn :)

Brownie will stay with us overnight tonight...keepin' the party goin'

Must run and get clean clothes, some food, and a headache powder for my seizing head...


Keep praying for The Charmer but also our roommate and Jin Jin!  Life is fragile, we see it here so closely as suffering is all around...

Thanks for all your love and support!

Infection

Please pray.

The Charmer is being admitted now to the hospital.  His blood work-up was spiked with infection.  The great concern is that the infection is inside the bone.

All the kids have gone to friends.  Daddy is at the hospital, and I am on my way.  There is no way he can stay in the hospital overnight as has been ill for the past seven days with bronchitis, so I must quickly pack a bag.

Surgery is on hold.  Our lives are on hold till we know more.

Thanks for your prayers.  Will update as soon as we can.

Love and the Unknown...

 Today The Charmer was visited by an angel.  One of his lovely pre-k teachers, also one of our neighbors, on her DAY OFF, came to our home and brought some play-dough she made...with activities for him to do while he laid in the traction bed.  I was just overwhelmed.

Mrs. J has a large family of her own, yet she took time out of her day to encourage our guy.  He was thrilled to see her!

The sign below is hanging above the traction bed.  It was made by classmates of our guy at the school.  Our school's theme this year is "building one another up" and so some of The Charmer's classmates (and his lovely team of pre-K teachers, Mrs. P and Mrs. J) decided to make some special messages for him to encourage him along the way.  The other teachers and students in the elementary caught wind of the idea, and soon, EVERY student in the elementary was making personal notes of encouragement, drawing pictures of The Charmer walking, and quoting scripture...all of those "building up" notes were then mounted on a board and presented to The Charmer on the last day of school before traction began.  

We marvel at the above examples of the Body, caring for one little boy.

The surgeon came to see us tonight and to check on the traction progress.  There is now some concern that perhaps the first pin site, where the pin had to be removed, is infected.  PLEASE PRAY that his body will fight this infection and that it will be clear when we must go back to the hospital for a blood test sometime in the next two days.  If there is infection, no surgery on Monday.  If he is clear, we do all our pre-surgical work-up on Sunday for Monday's surgery.

The Charmer told us today, "I am going to walk. Jesus is going to help me walk."

The pure faith of a child.

Back to the Hospital

Daddy discovered something that concerned him when checking on The Charmer's traction.  The right leg's pin seemed to be fixed and firm...but the left leg...the left leg's pin was moving, in the bone.  Knowing that things are not supposed to move freely while IN BONE, he called our surgeon who suggested that it was just slight moving in the soft tissue that Daddy must be seeing.

We went to bed on Sunday night, but Daddy was so certain that something was amiss, that he unhooked the left leg from the weights.  The next morning, he spoke with the surgeon and it was agreed the we should immediately return to the hospital.

So...Momma and Magpie (who was home sick from school, but whose service was absolutely essential to transport the little brother) loaded him up in our family ambulance.

***Last year, we were given the funds by a dear family, to purchase a modest, 2nd hand van.  The van seats 9...while for those of you keeping score at home...we number 12.  We just go "China-style!" :)  (Your judgement is noted and though respected, dismissed by we who live here and where it still seems "normal" to roll this way.)  The point of the digression from the current story is to say that the van, serves as school bus, ambulance, and blessing-mobile for not only our family, but for many in our community.  We are EVER SO GRATEFUL for the change this vehicle has made in our lives!!!! In another post I will detail what the process is like to obtain a driver's license and vehicle registration...but I just don't have the hours to do so now! Though, I feel it would be good therapy.

At any rate, we loaded up the boy into the van after wrapping him in blankets and descending the three floors to the van/ambulance.  We drove forty-five minutes through hair-raising traffic and arrived at the gate of the hospital...which was closed to vehicle traffic...and they attempted to waive us away. 

***In previous years of living here, I would have undoubtedly allowed myself to be waived away...no more.  I opened my door, mustered up my most serious Chinese (sounding like I was yelling/cursing, while asking "nicely" to enter because my son can not walk the remaining two blocks to the hospital...nor can I carry him that far!)  And voila...the gate opened for the H family ambulance.

Then, we arrived at the driveway approach to the Emergency room.  It was closed.  I repeated the above performance and was awarded entry.  Magpie went into the building, wrestled a gurney from a cleaning lady who was suspicious that Magpie was stealing said gurney for unknown purposes...and came out to load our boy.

I then attempted to back through seven-thousand souls to reach the entrance to the parking garage that was closed.  I relayed my story for the third time, this time insisting that my son was now on a gurney in the hospital without me...and a card was given to me...the gate opened, and I descended into the bowels of a dark, dark garage.

After parking the ambulance, I hoofed it up three floors, sucking in clean air to replenish my lungs ;)...then arrived in the ER hallway.  We needed to go to the 15th floor to see the doctor.  There were nearly 50,000 people throughout the first floor of the hospital that we needed to press through to reach one of the two elevators that reaches 15.  Again, I note a real difference in my manner of navigating...I extend my right hand and touch/urge people out of the way while shouting.  This appears to me to be the only successful way to make it through the hordes.  Upon arriving at the waiting area for the elevator, I insert the gurney through the people and Magpie and I take our posts to discourage interested parties from lifting The Charmer's blankets in their attempt to diagnose why he is in the hospital on a gurney.

Up to fifteen, the doctor confirms that we have a problem.  That The Charmer's left leg bone is brittle and the pin is tearing through the bone.  This is not good news and confirms that he has osteoporosis because he has never used the leg bones for weight bearing.

The decision was made to remove the first pin and to insert another pin, higher on the left leg.  As you might imagine...none of us were thrilled with that prospect...but, we did it.

Two hours later, we argued our way out of the building using the gurney,  retrieved the ambulance, carefully loaded the boy with a new, longer pin extending out of his left leg on both sides...and settled him on his traction bed again.

3 days of traction done...6 to go.

We can FEEL all of your prayers.

Waiting to find out what is wrong.

Our exam room cupboard

Hospital selfie - for the fun of it

Old pin out - new pin in - going home.

Traction

Warning to the squeamish...the photos below might be unsettling amd perhaps you'd like to avoid reading further!

Since our return from the States we've been waiting for this day to come.  The Charmer has begun phase two of his major surgery.  His hope is that after we're through this difficult journey, that he will be able to walk using braces.

Finally today the surgeon's schedule opened up and we went the local hospital.  Our purpose was to have pins inserted through The Charmer's femurs, so that he could begin 24-hour a day traction, pulling on both of his legs, in preparation for his next operation.

Usually, if a child requires traction, it is done by wrapping bandages on the legs and then pulling the bandages to produce stretching of the muscles. However, due to his neurological damage from Spina Bifida, The Charmer is not a candidate for this type of traction as he could not tell us "where" it is painful, and in that case, skin ulcers can develop.  The Charmer has often endured skin ulcers during rounds of casting and bracing.  We don't want these open sores, especially prior to the upcoming surgery.

So, instead, we went to the hospital where The Charmer and Momma went into a small procedure room just off the Emergency room.  Armed with an iPad and some earphones, we faced the gruesome prospect of a drill, pins, and no sedation.

The procedure was quick, loud, and scary.  However, The Charmer was strong through his fear.  Momma found that she was able to "handle" watching all the procedure (much to her surprise), and was relieved when it appeared that though scared, The Charmer felt no pain.

We have returned home.  This is a very special arrangement as most children in our city would be confined to traction in a hospital bed.  Instead Daddy fashioned a makeshift traction bed here in our living room where he'll remained connected to the weights, pulling on his legs, for the next nine days.  His head is lower than his legs, he can only sit up to eat, and he will not return to school for probably the next three months as he will be bedridden.

We will update here, for those who are interested in following, the steps toward the next surgery that will put both femur heads into his hip sockets, as well as changing some of his anatomy of his femurs.

We thank you for your prayers as this time is challenging for The Charmer and the entire family.   We are grateful to God for providing us a masterful, compassionate surgeon.  We also give thanks for those who have partnered with us to give The Charmer this opportunity for surgery.

Here are the photos if you dare to see what today's procedure actually looks like...

More in the coming days...

Waiting to go into the procedure room...

A drill was used to drive a pin from one side of the leg to the other

The right leg complete, the left leg it prepped

At home, pins extending out of each leg, the glass vials were used to protect The Charmer from the sharp ends of the pins.

In traction - looks more like a craft project - but it is doing the job.  You can't see the small weights made of barbells and weighted plastic bottles.