The year that was (third hospitalization)

Part 1
Part 2
Part 3
Part 4
Part 5
Part 6

And so we continue...

A new doctor took Jeff's case.  We were not confident that he was aware of the previous infection/situation, he was not a joint surgeon, so we requested that Jeff's first surgeon (Dr. B.) come back on the case.

Jeff suffered through the weekend, we worried about a repeat infection in his hip joint.  If re-infection had occurred, he would lose the hip joint for sure, and a new one would have to be installed.  It was frustrating to wait through the weekend, difficult to consider yet another possible surgery, and besides, this mean that Jeff would be out of work for...how long?  Who knew?

Good news came on Monday morning.  Our brilliant surgeon, Dr. B., stopped by Jeff's room.  The antibiotic beads that had been inserted into Jeff's hip were designed and infused with full-spectrum antibiotics.  They were meant to fight against almost any known type of bacteria.  (We later learned from Dr. B's assistant that together they made the cement beads themselves, grinding and lacing, infusing them with antibiotics.  We blessed their brilliance, acknowledging it as a true gift from God.)  What a thrill to hear this news.  We could breathe again.

Where was the infection coming from, then, if not from the hip joint?  The hospital had repeatedly assured us that it could not be coming from the PICC line, as they had never had a PICC line infection.

For my part, I was a little freaked out.  One staph infection with no known origin is bad enough.  But two?  I started becoming a serious germaphobe (bacteriophobe?)

Finally, one doctor ordered the PICC line pulled.  The tip was tested, and sure enough, the line was the culprit. Once it was removed, and a new one reinserted, Jeff began to improve.

It was June.  The office for my fetal/maternal specialist was located at the same hospital.  It simplified things, in a way.  I could walk over a few buildings and talk with the office instead of dealing with phone calls.  I tried to talk them down from such frequent ultrasounds and blood draws (every two weeks for both) but to no avail.  The baby was continuing to grow well and the titers for the isoimmunization never raised, not even a blip, and they never did.

The big kids were still running things the best that they could at home.  We were still caring for my parents, keeping up their properties as well.  Both of my parents were beginning the preparations for joint replacement surgeries.  Mom's surgery would be in August, Dad's would be three weeks later in September.  And the baby was due three weeks after that - or so.

I'd come home at night, cook supper, do laundry, spend as much time as possible with the little ones, handle finances, send out updates, etc., then head back to the hospital to be with Jeff as much as possible.  The big kids did well, considering, but they suffered.  They had their own heartaches going on at this time; struggles to fit in to their worlds, friendship issues, etc.  We sorta, rather...fell apart during these days, quite honestly.  I know that everyone wants to hear how a good family "overcame," and that part comes eventually, but for a time we were just in a world of hurt.  Sometimes, even though you love the Lord and even though you "trust," you just struggle and the path is terribly long, dry, dusty and painful.  I looked ahead and saw two more surgeries, still, on top of everything.  I saw two elderly people who desperately needed me, and I really was the only one around to help them at that time.  There were no guarantees that the surgeries would help my parents, even.  How much would they directly need me in days to come?    I saw many children who needed their mommy, teens who needed mom to not be so distracted, and a husband who needed to be nursed back to good health.  I looked down the road, and saw no end in sight.  Why did we ever think we could do this, handle this much?  Well...we were still following what we were sure we were supposed to do...care for our children, care for our elderly, care for each other. 

We were overwhelmed, but we did what we had to do.  We kept getting up and doing what had to be done, day after day.  God kept carrying us.  There is no other way to explain it.

Jeff got well enough to come home from the hospital.  He improved little by little.  In mid-July, he re-entered the hospital for another surgery, this one to remove the antibiotic beads from the hip site.  Dr. B. took his joint completely apart, cleaned it out again, and put him back together.  Jeff didn't stay very long this time, just a few days, and when he came home he was soon walking without the walker.  He brought me coffee in bed the first morning he was home.  What a sweet memory that is.

Jeff was cleared to return to work the second week in August.  His workplace had retained his job for him, that was a real blessing too.  He had been out of work, without a paycheck, without work paying for his insurance, for three months.

God taught us so much through these trials.  We were humbled, but in a deeply good way.  We gained compassion for the "down and out."  We were blessed by the love and remembrance and strength of friends.  God is so good.  Blessed be His name - through easy times and hard. He is worthy of our trust, not because things turned out, but because He is God and He loves us.

(Next time, I'll write about my parent's surgeries, and then finish by telling about the day that Gabriel was born.)

The Year That Was: A second staph infection

Part 1
Part 2
Part 3
Part 4
Part 5

(I'm going to try and finish this "remembrance" by the time Gabe turns one.  That gives me three weeks.  This is such a long story - so much happened last year, but I think I can do it.  I realize that the average blog post is supposed to be 600-700 words, but since I'm writing this all down for our family to remember, I don't want to leave out the important parts just for the sake of the average attention span.  Jeff and I were *just* talking thru the events of this post a few moments ago, and were pretty surprised at how much we've forgotten about the sequence of events.  There are some feelings, though, that I will never forget.  This was a hard one.) 

We were one week out from having Jeff's PICC line removed.  He'd been on iv antibiotics for five weeks.  Anyone who has dealt with that knows how frustrating it is.  We'd wrap his arm in plastic, cover it in more plastic, tape it shut, and still water would soak the line dressing.

At first Jeff was very weak, we were unsure of how to get him in the shower since he was still healing from the hip surgery.  I was always nervous - what if he fell?  We got into a good pattern, however, and he was slowly regaining strength and color.  He was able to walk outside occasionally as the weeks progressed, he was returning to decent health although he was still weak.

One night, I noticed that he felt hot.  Shortly after, he started uncontrollably shaking again.  Of course we were concerned.  How could he be getting another infection, considering all of the daily antibiotics he was taking?

We called his case nurse.  She assured me that it was nothing, that sometimes the body simply "got a little temperature in the evening."  As it was getting quite late, I wanted to be sure for the night, and so I asked for clarification.

"What you are telling me is that there is really NO way he can get a second infection?"

"That's right,"  she replied.

"And so I really shouldn't worry."

"That's right.  I've been a nurse working with PICC lines for over 20 years.  Trust me.  Your husband is NOT getting an infection."

"Okay.  When SHOULD I worry?  How high of a fever is too high?"

"He'll be okay as long as the fever stays below 104 degrees.  If it gets into the 104, 105 range, you'll want to go in and have it checked out."

Well......we didn't really believe that, and Jeff's symptoms continued to increase.  I was still scared stiff from the first staph infection, so I wasn't willing to wait around for his fever to climb.

We went to the Emergency room, told them what was going on.  Jeff looked pretty good, walking with no cane, etc.  He's a strong man in his early forties, joking around with the staff, etc., at least while ibuprofin kept his fever down.

A doctor came in to examine him and to ask him some questions.  (We were at the same hospital he had been in a month prior.)  The doctor was very confident - overly confident, I'd have to say.

"You don't have an infection of any kind."

"Really?"

"No.  You CAN'T have.  You have way too many antibiotics in your body."

"So an infection is IMPOSSIBLE?"

(We were really double checking here - Jeff's recent brush with death was still too fresh in our minds.)

"Trust me on this.  Another infection is IMPOSSIBLE.  You're fine.  Just have a little fever.  Nothing to worry about.  And it can't be a PICC line infection, because we have NEVER had a PICC line infection here in our hospital."

But they took blood samples, anyway, "just to be sure and put your minds to rest...."

And we went home.

You know where this went, right?

Right.

The lab called within a few hours and told us to come right back to the hospital, because Jeff indeed had another staph infection and it was growing.  They did not wait for the entire, normally required period to see what was growing - they could see that something was and that he needed to be readmitted.

So we packed up our bags and left the big kids in charge and went back to the ER.  We ran into the doctor from the previous night who had assured us there could not possibly be an infection.  He did some serious back-peddling.  "Boy!  When I saw you last night I knew there just wasn't something right.  I went with my gut and ordered bloodwork done, and I'm sure glad I did that!"

We smiled wanly, remembering very clearly what we had been told.  We waited several more hours, during which time Jeff continued to get more and more sick and I grew more and more panicked.  Everything seemed to drag and just took so long.  An hour to get a gown, an hour to get labs drawn, an hour to get labelled, tagged, etc., and during this time no evaluation and no meds were given.

Jeff started shaking uncontrollably.  I began going out to the linen cart to get blankets for him.  He'd cycle through sweating and shaking.

I stood in the doorway of our little room, hoping that my presence would make someone remember that we were here and that my husband needed to get to a room.  He needed some attention.

The charge nurse, a tough looking guy, saw me in the doorway and sent a nurse my way.  "Tell her to get back into her room.  We can't have people out here gawking."

Honestly.  I wasn't gawking.  I was so exhausted at 3 a.m after the past month and with handling so much of everything at home and with the extra care, plus the stress of what was happening to my husband a second time.  I wasn't "gawking," I was staring into space, vacantly.  But I obediently took my offended little self back into our cubicle and wiped Jeff's sweat-drenched face and changed his soaked gown.

Still no doctor, still no medications, still no room.  And now, he was missing even his PICC line meds.

Finally, around four-thirty a.m., Jeff was taken to a room.  By this point, he was shaking so hard and breathing so rapidly that I thought his heart would explode.  His fever was high and he began to vomit.  At one point, he began to throw up and the charge nurse and his regular nurse were in the room.  They did nothing.  I leaped to the adjoining bathroom and grabbed the pink bucket where they stow a patient's toiletries.  (Bear in mind that when I say "leaped" that I was six months expectant.)  I threw the contents of the bucket into the sink, ran back to my husband, and held the bowl for him.

The nurses just stared at me.

This cycle continued for the rest of the night/early morning.   I did not mind caring for my beloved - in a way, I wanted that to be my job.  But I felt so alone! I wanted help, but did not receive any.  Neither was there any communication given from the nursing staff to me.   I ran between his bed and the bathroom, almost overcome with panic.  Eight kids at home.  In a hospital, but receiving no real care.  I kept a cool cloth on his head, kept changing his gown as he soaked it, kept replacing his blankets as he soaked them.  I hunted down his nurse and asked for a warm blanket to help with his extreme shaking.  I was told that they did not have a blanket warmer on that floor, and that it was against policy to use the microwave to warm a blanket for him.

I watched his chest rise and fall and waited for him to have a heart attack.

Would they come and help then?

It was so awful.

I finally left the room and went to the main desk on the floor and asked for the head nurse.  I asked her for at least a warm blanket.

She replied that "she would see what she could do, but they were running low on blankets."  And the implication was that I had been using too many blankets.

I could not believe my ears.  A man came near death, has his second staph infection in a month's time, you've given him no care, and you're going to fuss at the wife because she has used too many blankets?

A limit was reached in that moment.

I knew we were not being treated right, and something rose up within me.  Perhaps it was justice, I still haven't put my finger on it.

I said, "Then you will need to go to another floor and get some more blankets.  I do not care if it is against hospital policy.  Go to the laundry and get more blankets.  And while you are at it, please let the doctor know that we are here and that my husband has not received any medication."

Within a short while the doctor arrived and examined Jeff and read his charts and ordered a new kind of medication.  The head nurse hovered near, filling the doctor in on all of the care she had been giving Jeff.  It was dawn, it had been such a long night.  I was ill myself with worry and the trauma of seeing him so ill, again.  Once the doctor left the nurse spoke with me, never apologizing but saying that she understood why I was so upset, seeing that I was pregnant and over-emotional and all.

I took it.  I didn't really know how to respond.  I was beyond spent, and I was just glad that Jeff was finally getting help.  As soon as I could, I would request that Jeff be seen by our regular family doctor and his surgeon.  They had handled his original illness very, very well, and they would interpret the lab results for us.  Our concern was that the staph illness had settled in his hip joint again, and that he would maybe lose the hip or worse.  And if the staph infection was the same kind, and had overcome the antibiotic beads placed in his hip joint and in his PICC line - what would we do?  What could be done?  Were we facing death again?

The year that was: Provision

Part 1
Part 2
Part 3
Part 4


Jeff came home.  We settled him into a recliner in the living room.  It was more comfortable for his hip joint than a bed.   He was incredibly weak at first, walking with a walker, tiring easily.  Over time, he gained appetite and strength again, and with a regular regimen of antibiotics through his PICC line, he began to improve.

We began to get cards in the mail.  One of the very first letters we received was from a dear friend of ours who had been widowed.  She wrote words that we needed to hear, words that we would cling to in days to come:  Jesus told me to tell you this:  He loves you.  He cares for you."  That card was the first, but the message was repeated many times over.

"God loves you.  God told us to send this to you.  God cares for you."  What amazing and beautiful words to us through difficult times.  We read the cards to the children.  We let them look through them, let them see how God was taking care of them - in spite of their parents' fears and skepticism.  At times we truly stood and in the midst of pain and fevers and doctors' visits - beheld the goodness of the Lord.  He did not remove the pain nor the tough times - but He let us know that He was with us.  That was the most important thing.

We had been worried about finances.  God began to provide for those, too.  He must have been nudging some hearts, because people that we didn't even know began to show up, sending gifts in cards, helping us through a horrible time.  God's people came through, and it was just enough.  There was not excess, we did not head to Disneyworld, we did not waste it, we still had huge medical bills, we still lived simply and carefully - but there was enough to get by day to day.

Our larger city homeschooling groups brought food:  Canned goods, noodles, paper towels, shampoo.  Our small, local community of homeschooling friends gave so generously to us.  They brought us meals for a month, I think.  Online friends - some of you (!) gave to help us through. My brother's church in Georgia undertook to pay a large portion of the surgeon's bill.

Our home was paid for.  (Remember?  We bought this place for $16,000?  I was so discouraged at the time at this old house - yet another old home that needed remodeling - but can you imagine how thankful we were that we owned our home free and clear and would not lose it through illness and inability to work?)  Our vehicles were paid for.   Jeff did not receive a paycheck for three months, and there was no short term disability available. The Lord provided enough to cover our insurance payments, which Jeff's workplace did not cover while he was unemployed.

I get soggy-eyed as I stroll back through time, remembering.

God carried us.  He carried us through his people.  It is so easy to get discouraged about the state of the church, but we have experienced the very best of God's network of believers.  There was such love, and unity, and coordination - without any human coordinator.  It was God at work.

Our mission commitments were paid by a friend.  That meant that the missionaries who rely on us for support did not have to do without while we were down and out.  Anonymous donors paid for our children to go on stateside mission trips.

We were never left alone - not even for one minute.  That does not mean it was not hard.  That does not mean that we did not stare at death and disease, nor that I did not worry myself silly-sick, because I did.  There was still a very long road ahead.

But our God?

He delivered us.  He walked with us, and carried us.  Sometimes we get to really see that, to feel it.  Other times, He carries us, and we don't realize it until much, much later, when we can breathe again.

This is just part of our story, of course.  Many Believers have different stories, with different endings.  Not everything turns out well in this life.  Everyone of us will eventually face difficult times, times which will either strengthen us or threaten to destroy us.   For a time, I was not certain of what our outcome would be - strength, or destruction.  Every story, though, has the same theme woven throughout - as Christians we can find hope again in the God who carries us, in the God who turns what was meant for evil to good, and in the only God who longs to bring  healing and restoration to our human situations.

Coming up:  a second infection and hospitalization

Looking back - the year that was: Staph infection/sepsis/hospitalizations (Part 4)

(Part 1 is here, part 2 , part 3.)

The surgery was several hours long.  I don't even remember how long, really.  I know that I struggled to hold myself together.  I felt sick to my stomach but also knew that if I didn't eat something I'd collapse.  It was such a difficult place to be in - not caring the least about what happened to myself but knowing that I had to preserve my health for both the baby and the children who were at home.  I couldn't afford to become weakened - I had no idea what was in store or how long this might last.

My brother-in-law, Gene, called.  I had walked outside to a garden area to get some fresh air; saw the helicopter pad where Sammy had been flown in 5 months earlier.  It was the first time I let myself fall apart.  The memories were so horrible - holding my bloody 5 year old with things oozing from his head, sending him off alone for the LifeFlight, racing to the hospital and thinking of him strapped so small on the body board without his mama....and now, Jeff.   I stood beside the helipad, looking at it, and I broke down when Gene asked how Jeff was doing.  I had to tell him that I did not know, but that what he had was bad, bad, bad.  That people died from this.  I felt horrible for being so hopeless - I was supposed to be hopeful and hold everything together for everyone.  I felt so much responsibility - for the kids, for the baby, for my parents (who would take care of them?), for our families, for our friends.  We, Jeff and I, we were supposed to be strong for everyone else.  And without Jeff to be strong with me - I felt so empty and so alone.  It was so good to talk with Gene, though.  He and Jeff sound so much alike on the phone.  He was a comfort to me.

After several hours the surgeon came out and we met in a small conference room.  A doo-rag held the sweat back from his eyes,  there was blood smeared across his scrubs.  My husband's, I presumed.

"I did my best," he said.  "He was septic.  That means the infection was not only in his hip bone, but is also in his blood stream.  I took his hip joint completely apart, cleaned it out really well.  The infection had eaten into the bone.  Any longer, and it would have totally destroyed the joint.  I scraped that off, rinsed it so clean you could eat off of it," and here he chuckled and said, "but I don't advise it..." adjusted his glasses, cleared his throat, and continued, "he is a very very sick boy."  "I don't know what will happen.  I hope that I saved his hip.  I "think" he will be okay.  Once I was done, I put everything back together again and inserted a strand of 17 antibiotic-emitting cement beads.  They'll sit right under his hip bone, and they'll need to stay in for two months.  Then we'll have to take them out.  I don't know if we got all of the infection, but we sure tried.  Your husband has so much antibiotic directly applied inside his body, that if he were to ingest it, it would kill him.  He is on the strongest medicine we have.  Since I don't know what this infection is, I had to hit it with a wide range from our arsenal.  Your husband is very strong, though, and young.  Those two things are in his favor."

"Doctor," I ventured, wanting to ask, knowing reality and wanting his sincere assessment.  Most people had been dancing around the seriousness of what was going on, trying to spare me.  Up until now, medical personnel had walked around with grim faces but no one would talk straight with me.   "I know that this can kill people.  I've got a friend who was widowed by this very type of thing...."

I didn't even get to finish my sentence, because he was nodding.  "Yes.  It does.  I HATE this.  This is the ONE THING I have nightmares about.  I hate this stinking bacteria.  It's my passion to clean it out, to wipe it out."  He shook his head some more sweat dropped to the floor.

I took his hand and put all of the sincerity I could find into my "thank you."  "I appreciate your wisdom and skill and that you did your best for us."

He looked into my eyes and nodded and said again, "I'm a perfectionist.  I did my very best.  Take care of yourself and that baby."  Every time we met after that, he always asked about the baby - how long til it was born, how I was doing.  I was touched by that.  I hope that we touched his life, too, and those of other people we came into contact with.  God doesn't waste anything, you know?

I did not see Jeff for several more hours.  He never comes out of surgery well.  They have to use so much medication to get his muscles to relax enough "take him apart," that it takes him a long time to wake up and he can't keep anything down for several days.

But finally, he was settled in a room.  I was so happy to see him, thrilled to be able to do small things for him:  change his pillowcase, get another blanket.  He was alive!  I called the kids and since it was late, they told me to just go ahead and spend the night, that it would be okay, so I did.

I'm never any good when Jeff is down.  I can't read, can't stand to watch television, can't even pick up anything to knit or sew.  It all seems pointless when he's not "there."

Jeff had a few tough days as the antibiotics began to do their work.  He was quarantined - gloves, gowns and masks were required to enter his room.  (Which made me wonder...since we didn't know where this came from, was this same bacteria lurking in our home?  A panicked mother's mind can go in any direction.  What about on his razor?  In the shower?  All of my children were at home.  What if one of the boys grabbed his razor in a hurry and used it?  Could that spread it?  No one had any answers for me, either.  They deal in the "here and now," not in the theoretical.  I cleaned  everything when I was home, but goodness, the questions scared me while I sat at the hospital.)

Jeff followed an ebb and flow of high fevers and chills, high blood pressure readings and nausea for several days.  I raced home when I felt I could leave him and made meals for the kids, coordinated their schedules, did laundry (the 2 year old was potty training herself....) wrote notes, made phone calls, etc.  So many people were waiting for updates, but every free minute I was home I needed to be giving attention to my children.  So many of them were still little - they needed mama too.  They weren't used to me being gone so much.  I felt like I was trying to be so many things to so many people and failing in just about every way possible.  I just did the best I could and hoped that people would understand!

The third day following surgery Jeff began to improve.  Although he still had fever, his vital signs began to stabalize.  He was able to walk (!) and sit up in bed.  He was very weak, and we didn't know if the infection was eradicated from his hip joint, but progress was being made on the bacteria in his bloodstream.

We announced our pregnancy to the world on facebook.  I was a bit fearful of what people would say, of the reactions we would receive.  Would they say, "How irresponsible."  "Here you are, in a crisis, and you are having yet another child?"  "Boy, you guys don't know how to PLAN, do you?"  "Shouldn't you have stopped a few kids ago?"

But on the other hand, I knew that this little person was wanted desperately by us, loved already by his family, and that although our journey was different from many of our friends, we had listened and had followed God's plan for US - it was tough to explain, really, but we have listened to our Lord for each child - and He has confirmed that each child was meant to be and in His plan for us.  We don't try to tell other people what God's plan is for their lives - but we knew this was His for ours, no matter how it looked from the outside looking in.

Mostly, our baby news was well-received.  People rejoiced with us, even as they shook their heads in wonder (some at our faith, some at what they perceived to be our stupidity.)  We heard a bit of incredulity, but mostly, the noise was just glad.

To add to the craziness of that time, I learned that I had not one, but two(!) rh problems with my pregnancy:  I was iso-immunized at some point in a previous pregnancy with the antigens anti-E and anti-C.  This, too, was difficult news to bear.  It almost seemed unreal, crazy even.  It was like we just took the news and threw it on the heap of our troubles, Beverly Hillbilly jalopy style.  It was all too big to really deal with.  It meant that I would need to see a Fetal/Maternal specialist every two weeks, have an ultrasound every two weeks, and have my blood drawn every alternating week.  (Because, apparently, I did not have enough going on.)  The risk was that my white blood cells might begin seeing the baby as an "invader" and begin attacking the baby's red blood cells, which in turn would make the baby anemic.  As long as the condition is monitored, there is a good opportunity for a good outcome.  Worst case scenario could have been death for the baby.  Mid-case scenario meant a blood transfusion in utero, and best case scenario meant that nothing would happen and the baby would be fine.  (In the long run, you all know that the baby was absolutely fine.  Not a single bit of trouble...just a whole lot of doctor's visits and blood draws, and me needing to be gone from home more.  Our big kids were so fabulous.  They paid a price and we have spent the last year re-building so many things - BUT - they were incredible.)

Jeff continued to improve.  We were so, so grateful.  A central line was inserted in his arm and threaded to rest right in front of his heart, where it could emit antibiotics on a steady basis.  A nurse trained us how to administer the medication on our own.  We were so happy when we were ready to leave the hospital.  I wasn't sure that I could get him home all by myself in our little car, but I did and we made it.

Being home, all of us together, was so sweet.  I still felt numb, still did not know what we were going to do to manage for the three months Jeff would be out of work, still did not know if the infection was gone from his hip joint - but he was alive (!) and we were home! 

And that was Round One.  Next time, I'll tell you about Round Two and how God began to provide for us.  Although the difficulties did not go away - our friends and family began to show up, and God began to shower His love on us in some very tangible ways.  Oh my, how He DID provide and the lessons we have learned.  Stay tuned...

*one final thought that I want to communicate although this really is already too long....


I feel that we who are Christians need to be sure that we give credit where credit is due.  Yes, our God heals - but he uses the skilled hands of people who have dedicated decades of their lives to study, practice and application.  I have wondered how it makes the doctor/specialist/surgeon feel when they put themselves through medical school, residency, and the hard slog of all that entails, to pour themselves out over their patient, to give of their best to save a life, only to hear the family exclaim, "God healed our loved one!"  Does that make the unbelieving surgeon more inclined to believe, or does that make him, perhaps, resentful?  I've wondered, too, at those who believe that God sends horrible diseases or viruses.  What does that say to the physician who has devoted his or her life to the eradication or treatment of these illnesses, who has seen the ravages of disease on the human body?  Does that make God seem terrible to them?  I think it could...

I believe that God does, indeed, heal.  And I believe that sometimes He does that spontaneously, because He certainly CAN DO THAT!  But I also believe that He wants PEOPLE to interact with PEOPLE, and that so very often He uses the skills and talents, intellect and dedication of doctors and other devoted medical care workers to save and/or improve our lives.  After this last year, I've come to the place where I'm very sure to thank the doctor, the nurse, the lab worker for their care of me and my family, for their involvement in our lives.  I pray that we live the Gospel in front of them, that they are blessed for the work they do, that they are blessed because of us.