Thursday, August 20, 2015

God Moments: Disappearing Pocket

We were on Cloud 9 after we made it to Day 5 and saw the heart in the bulb of my drain.  We drew great comfort from that and ANY sign that encouraged us that I was going to improve, go home, and be "Penny" again.  BUT there was still one major hurdle to jump.  There was still a questionable pocket of fluid in my lower abdomen. 

This pocket of fluid previously had a drain in it that was inserted outside of surgery by an Interventional Radiologist. They took me to CT and inserted the drain by taking pictures, inserting and using the CT scan to assist to ensure it was placed properly.  I was scared, but in the end it didn't hurt that much to put IN.  Now, pulling it out was another story.  I did not want another drain placed there because it would have been the same method and the removal was a bear.  Quick, but a high-pitched scream kind of a moment.  It also meant going home....but with a drain.  I just wanted to go home with as few attachments as possible.

My surgeon ordered a CT scan of the area where the pocket had recently been seen.  It had been there all along, in all the CTs and didn't disappear even after the drain had stopped draining.  It was very stubborn.  He said if it was the same size or smaller, then we wouldn't worry about it.  As you can imagine, I didn't want it there AT ALL.  Even if it was smaller, it was still a potential breeding ground for infection that I had had plenty of.  I wanted it GONE!  So, we began to pray.  We spread the word, yet again, to pray for this pocket to vanish, disappear, be GONE!  Please, please, Lord, I begged!  Please let this be gone.  I was so fearful of going home with anything remotely close to having potential for infection.  I always went back to the fact that I was "near death septic" and I was walking, driving my kids, feeling tired, but OK and I had no idea how sick I really was.  I didn't trust myself to know the warning signs if things went bad at home.

A dear friend of my mom and dad wrote a prayer to me and included "Rapha Father".  I know there are multiple names for God and each has a different meaning.  This is certainly something I want to dig deeper into now, but at the time, we learned that "Rapha" meant healing.  I held onto this and regularly prayed for Rapha Father to heal me. 

When it came time for the moment, the "big" CT, I was scared.  I have had so many procedures and even surgeries in my life and never truly felt fear like this.  I didn't want to be in the hospital any longer, I was worried about my boys, I was tired of being sick and fighting for my life.  I was just tired.  I was transported back down to my very familiar CT room for the scan.  Of course, by now, I knew all the techs in the department and they all greeted me. "You STILL here?" one of them said.  I scooted over to the scanner and tears just streamed down my face.  Yes...I was still there.  STILL.  All I could do was say, "Rapha!" and then I just started naming all the names for God that I could think of, "Emmanuel, El Shaddai, Elohim, Jesus, Father, God..." And for the next fifteen minutes I was moved in and out of the scanner and I just kept repeating the names of my Father in Heaven.  I just closed my eyes and whispered over and over again.  Amazingly, just saying those names, I stopped crying and found a great peace over my entire body.  "Heal me.  Rapha Father.  Heal me."

With previous CT's, as I left, I looked over my shoulder in the computer room to see what was on their screen.  I could always see multiple white balls (abscesses) scattered all over my abdominal cavity.  I didn't allow myself to look this time for fear I would see an old scan or see something that was really nothing.  I kept my eyes straight forward as I was wheeled back out the door and to my room and continued to pray that my CT scan was clear.

Later that afternoon, my Infectious Disease doctor rounded thru my room.  We loved him. He was very amiable and joked with my kids when they were there.  He loved me and took great care of me.  He was as important as the surgeon as he was in charge of the antibiotics and killing all the infection we couldn't see with our eyes.  When he came in he started to talk then stopped.  He said, "Has anyone told you about your CT yet?"  My Dad was with me and we both blurted, "NO!"  We had no idea it was back and the surgeon hadn't been by yet.  "Please tell us!"  I hung on every word he said.  For a moment and the way he asked that, I thought it was time to make a plan for re-insertion of the drain.  But in his next breath, he said, "It's gone.  The scan looks great."  I just stared at him for what seemed like forever as he went on talking and I interrupted.  "You are telling me that the pocket we are worried about has completely vanished?  It's no longer there?"  And he said, "Yes!"  And believe it or not, I cried.  And I looked at my Dad and he was crying....another non-surprise.  We cried A LOT!  Tears of joy for my healing and tears in awe that our prayers were answered and tears that we had no doubt that we had just witnessed a miracle.  It wasn't the same size or smaller...the pocket had VANISHED!

Praise GOD!  Rapha Father, healing Father, Elohim, El Shaddai, JESUS!

God Moments: The Heart

By the fourth week in the hospital, I was growing discouraged.  We needed a lift and we needed it in a physical change kind of way.  I was basically sitting in the hospital recovering from incisions, allowing them to drain and praying that the infection went away and the damaged areas were repaired.  It seemed like this could take forever.  There was no end in sight.

During my third surgery, the drain that looked infectious prior to the surgery was replaced.  It was draining from the duodenal bulb area that caused us so much grief already.  My surgeon said he scrubbed and washed and scrubbed that area really well so as to practically guarantee the infection would not return.

I like dates, parameters and measurable goals.  I asked him when we would know we were "in the clear" since this was now the second drain in the same place.  My surgeon said that usually by 5 days we can feel pretty confident that the infection is gone.  He told us that if that drain stayed clear we could start discussing sending me home. (Holy Hannah!  I could have leaped from bed and kissed him at that point.)  There were still some other things to work on over the next week, but nothing that wouldn't allow me to go home. You better believe we had a countdown going for those 5 days.  Every morning, Mom took a picture of the bulb to report that it was still red and bloody vs white and infectious.  This we celebrated every day. She sent it in a text to everyone in our family.  This might be gross for some, but for us, "Red" was health!  "Red" was healing!  "Red" meant I was close to home!  I didn't even think about what the alternative was.  We were focused on red.  We made it to Day 2, then Day 3,  and Day 4.  One doctor's opinion was even that we passed Day 3 meant it was pretty good.  But we still focused on Day 5.  


I woke up early on Day Five as I did every morning.  The nurses had been coming in all night.  New shift started at 7am, so the night nurse was hurrying up to finish her work on me.  It took me some time before it registered to me that it was Day 5.  I scrambled in my bed to find my drain....and this is what I saw:


Yet another promise to me that I was going to be OK.  There was never a day where there was anything remotely close to a heart in my bulb.  But on Day Five, there was my heart, my promise that I was going to be OK.  I quickly showed my mom, who took a picture and blasted it to the whole family.  We. Made. It.  And the heart sealed the deal.  And we both cried. :)

Another lesson I have learned thru this trial is that God is everywhere.  He is in everything.  But if you aren't looking for Him, then you will never see Him.

If I am trying to be poetic, I could take the lesson to be that Jesus died on the cross for me and thru his blood I am saved because He loves me so much.  So, the heart in the blood draws all new parallels.  

Once again, we received confirmation even thru small things (that were BIG to me!) that God had this!

God Moments: Amazing Prayer (Part Two)

From that first night of prayer, I mentioned that two things happened.  First was the Refiner's Fire moment and second was my own vision.  As we were praying, my friend asked me what I saw.  This is an eyes closed vision.  What was in my head?  All I could imagine about going home was sitting on the front porch watching my boys play football together.  Ahhhh....pure bliss.

Every time we have moved, I always look out the window and visualize me sitting there watching my kids play.  Even before we had kids, I was pregnant and we were looking at houses.  While we looked at the house we ended up buying, I stood in the utility looking over the desk (the desk that would be mine) and out the back window and I could see my future child(ren) playing in the back yard.  I had that same serene feeling when we moved to this house. Our front yard is large and perfect for the boys to play ball.  It's a very happy vision for me.

As he was praying for me, he asked me what I saw while I prayed.  What was I seeing in my head?

When I told him what I saw, he probed a little more and asked what else I saw.  I saw my dog, Mona :) He asked me this time if I was IN the scene.  I told him I was on the porch swing looking out, but I could not see myself in the picture.  He asked that I put myself in the scene and then asked what I was doing.  I was playing football, of course. 

"Anything else?  What else do you see?" He asked.  What stood out to me most were big rays of light coming down thru my trees that shone on my yard.  It was warm and relaxing.  I was certainly not poetic at describing what I saw, but I felt the warmth, the peace and I could hear their laughter.  That was my happy place.

He told me to keep that vision in my sights until I got home.  You better believe I did.  Any time I had a painful procedure or had a hard day missing home, I just held on to that vision of us playing football together in the front yard....with the beautiful light coming down between the trees.

Fast forward several weeks....Praise God, it was my first week home!  I was sitting on the porch with Babe, enjoying the moment being home and with my family.  Then it hit me....THIS was my vision.  THIS was my picture that I clung to in the hospital, down to the rays of light in my front yard.   Even as I describe it here, I don't feel that words do it justice.  This vision was from the Lord and in just a few days of being home, here it was before me exactly as I had pictured it in the hospital.  Exactly.


Through all the ups and downs, God has been present.  Present in a variety of ways, but little things that I feel were a "promise."  Maybe everyone doesn't see it as I do, but I know.  I know He is there and guiding my every step.  Life has changed considerably for me since my hospital stay.  My perspective is wider.  I don't get flustered with the little things...or the big things.  I appreciate everything....like walking, having good lung capacity, no pain, laughing with friends, playing with my kids, even cleaning my house.  What a joy to have a house to clean!

God is certainly present and this moment, this picture, was Him just winking at me saying, "I've got this!"  And I am so glad He does.

God Moments: Amazing Prayer (Part One)

It was probably after my second surgery that I finally had my blinders removed and realized that I wasn't going anywhere quickly.  I had slow improvements in my numbers, little bits of encouragement here and there, but nothing huge.  If a doctor came to my room and told me ANYTHING about improvement, I clung to every word he said!

By then, I was very tearful.  I was overwhelmed by the people that were getting in touch with me to offer their encouragement and prayers.  My parents would get emails daily that they shared with me about another person or group praying for me.  My sister sent me emails and notes on Facebook that she received from her friends and some of my old friends offering encouragement.  I had so many texts and emails on my phone I couldn't keep up.  Everyone wanted to help, but truly, the only and the BEST thing they could do for me was pray.  We were living on prayer and the peace that came over me multiple times was distinct and powerful.  I knew someone was praying for me then.  I wanted those prayers.  I begged for them.  PLEASE pray for my healing.

The dearest of friends' husband has a pretty amazing testimony himself about a group of men he meets with weekly to pray.  I am not talking about hold hands, Kum-ba-yah, say a prayer and be done kind-of-group.  These men have powerful prayer, emotional prayer.  They don't always know what they are praying for before they meet, but something always comes up.  They could spend hours in prayer together.  I have always been interested in their group.  I am fascinated by his story, as well as the power of their prayer.  My friend texted me to tell me they prayed for me one night.  Then, they asked if they could come to the hospital to pray for me.  Overwhelming YES!

What happened in that room was nothing short of divine power.  As I tried to explain it to my mom and dad, I realized that there were no words to describe the emotion, the feeling, the power that we felt as these men prayed over me and Babe.  Each of the men have their own unique spiritual gifting.  It's really fascinating, but I couldn't do it justice by explaining.  I do know that my friend's husband can often feel or see things that we don't see.  He doesn't talk about it in a way to brag or even discuss it with people that might not receive it well.  I believe what he says because I know him and I know his character.

That evening about 4-5 men and my friends oldest son (13yo) descended upon my hospital room.  I was so excited to have them in my room.  We took a few minutes for pleasantries and then we got to business praying.  Babe was at the foot of my bed and the rest of them circled around my bed.  Apart from the "feeling" I had during that prayer, two distinct things happened.   One I heard a few days later and one came to fruition after I was home.  

My friend's husband and one of his friends came back at my request to "rehash" what happened the first time.  I wanted to know what he saw or felt.  What his take away was from our time in prayer.  The most impactful thing he told me was about what his son saw and what he actually felt.  Every time they said my name his son saw fire flash behind my head.  He SAW this.  (This is a precious boy who has shown signs of possibly having the same unusual gift as his dad.  He is young and doesn't know how to interpret any of it, but gratefully has his dad to communicate with about his experiences.  For both of them I will say, the "visions" don't happen all the time or on command.  His is almost always thru the power of prayer and he takes great care to ensure that it is from God and nowhere else.)  His dad didn't know that at the time, but his dad was up by the head of the bed and he said he was sweating profusely.  Like, he had to wipe the sweat from his head while we were praying.  None of the rest of us were hot at all.  He FELT the fire his son was seeing.

The interpretation of this could possibly go anywhere.  When I asked him how he interprets what he sees, he simply states that it is thru prayer to ensure that what he interprets is true.  This is a HUGE subject and I know could be off-putting to some.  Like I said before, I know him and his character and his amazing faith that I trust him and what he has to say.  I also believe that there is a spiritual world out there that we can't see with our own eyes.  His opinion was that it was the "Refiner's Fire" mentioned in the Bible multiple times (Zechariah 13:9,  I Peter 1:7, Isaiah 48:10)

From John Piper's Desiring God:He is a refiner's fire, and that makes all the difference. A refiner's fire does not destroy indiscriminately like a forest fire. A refiner's fire does not consume completely like the fire of an incinerator. A refiner's fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner's fire.

It all left me speechless.  Whether I could SEE Him or not, the Holy Spirit was present in my room.  Take it or leave it, two experiences (seeing the fire and feeling the overwhelming heat) matched up between two different people.  What it did for me was to encourage me and use all that I am going thru to bring Glory to the Lord.  The Refiners Fire does not exist to hurt or destroy but to make better, stronger and more pure.  I knew then that I would survive this mess.  I just had to stay focused on my healer and continue to give thanks for all the blessings in my life. 

I will never be the same.

God Moments: The Anatomical Details

This post turned out to be more details about my surgeries than I thought I would give ;) Be warned, its detailed and probably boring, but helping me to get my facts straight!

After Surgery #1, there was a lot of fear and uncertainty as I recall.  It still didn't occur to me that things were life-threatening.  I remember the Infectious Disease doctor explaining that I could be on antibiotics for the rest of my life.  I didn't like that at all.  What I thought about constantly was getting back home and with my boys and how long is it all going to take?  I had NO idea what was before me.

We originally thought that the infection had occurred because my open and non-healing incision had a bit of exposed mesh from a previous umbilical hernia repair.  Apparently, the mesh used is safe until exposed and can cause serious infection.  We went into surgery anticipating the removal of a piece of mesh.  But oh how things changed!

They removed the mesh without a problem, but having seen first hand the amount of infection and that it was all over my internal organs, my doctor expressed the gravity of my situation.  I am pretty sure I blocked that out or I wasn't informed because I still thought I was going home soon!  There were pockets of fluid all over my insides that had become infected. He saw an area around my duodenal stump that looked unhealthy and like a possible leak.  He tried to replicate the leak with no success.  He was very disappointed, but also reporting how much of the infection they removed...manually.  They went in with CT results in hand and removed, scrubbed and flushed my abdomen over and again to remove all the infection.  He said every organ was washed and scrubbed.  Infection. Was. Everywhere.  They closed me up feeling like the infection was hopefully resolved, but still questioning a leak.  They were not convinced the mesh caused my issues at all.

I am not sure if I don't remember Surgery #2 or if having 4, I just have them all confused.  Surgery #2 took place because via CT there were still a few pockets of fluid that could potentially become abscessed if they weren't already.  In that surgery, they found a small leak in my colon. They felt that it was always there, but so small at the time of the first surgery that it was difficult to isolate.  They also still did not like the look of the duodenal bulb and discovered a bile duct had been cut.
My new surgeon was very respectful of the previous surgeon and at least attributed the colon possibly to clamps used during surgery.  I believe that to be true, as my surgery wasn't any where close to my colon.  The other issues....the biggest issues we dealt with...I have a hard time believing it to be relating to clamping.  The bile duct was really still in question as they hadn't isolated which duct it was and if it was a smaller periphery or if it was the Common Bile Duct.  The Duodenal bulb was so unhealthy that he couldn't stitch it and still could not replicate a leak.  Bottom line, I was sick and there were still a lot of questions.  They repaired all they could, still not confident in total repair.  

Surgery #3 occurred when it did because of an excellent nurse.  It would have eventually been discovered, but she caught it early.  At one time, I had 4 drains across my abdomen.  I joked and called them my basket of eggs when I had to stand up and move.  I had to stay light-hearted as I looked like a cactus and felt like a pin cushion to the 100th degree!  All the drains were draining well except one that looked infected.  They really had their eye on that one.  I returned from a procedure and stood to walk with my nurses help.  When I sat down, something leaked out of the holes of the three healthy drains that were across my lower abdomen.  My nurse grabbed a gauze and excused herself to speak with the charge nurse.  At that moment, my surgeon walked in and said, "We have to go back in."  It was stool and it was freely moving about my abdominal cavity.  At this point, I remember feeling desperate.  We HAD to find the leak!  I was also so tired and in so much pain.  The thought of them opening up my incision for the FOURTH time (including my original surgery) just made me hurt even more.  It was a successful surgery.  They never found the leak, but knew it had to be coming from the duodenal stump.  They used a special powder that acted as a cast or super glue that would seal whatever microscopic leak there was until it could heal itself.  They also scrubbed, scrubbed and scrubbed the area where the bad drain was located and replaced that drain with a sharp eye on that area to ensure the infection was gone.

In between those surgeries were many CT's, a Hidascan, so many blood tests, other tests, at least 8 pints of blood, wound care.  Oh the wound care girls.  They were so nice, but caused more pain than I could stand.  I had to be pre-medicated when they were on their way and screaming could be heard during the dressing change.  I had to have a family member with me each time to hold my hand because it was brutal.  Pain meds didn't touch the pain.  Monday, Wednesday, Fridays were their days to visit and certainly not a part of the good things I want to remember.  BUT....those girls on the wound care team were so good, encouraged me so much and I felt so confident in their skills and my healing wound every time they came for a dressing change.  Sadly, after every surgery, we had to start all over again.  They do deserve mention because they were the girls I loved to hate, but I loved them so much for all they were doing to help me heal.

God Moments: The Big Decision

So much of my hospital stay is a blur.  But there are distinct points that I remember that were very clear to me that God was in control. 

The wound care doctor was at Tomball Regional Medical Center.  My original surgery was in Houston.  I had returned twice to my original surgeon expressing concern over my wound and he was nothing short of apathetic.  No plan and no concern was expressed.  The wound care doc in Tomball took one look and admitted me to the hospital.

After I was admitted to Tomball by the wound care doctor, I was coincidentally discussing the plan with the Tomball surgeon at the exact same time Babe was talking to the original surgeon in Houston.  In the two hours I was allowed to get a bag, my mind was racing as to what we were supposed to do.  This was a HUGE decision.

1-Do we return to the original apathetic surgeon in Houston?  This is a long drive for my family.  He got me where I am.  His communication is terrible.  He released me from the hospital with temperature spikes and high white blood cell count with no concern.  BUT....Houston is the MECCA for health care.

2-Do we stay in Tomball?  The surgeon was extremely thorough, had a plan, excellent communicator. And you better believe I asked every nurse, aide, and tech what they thought about him and not one person said anything but praiseworthy things about this surgeon.  One doctor even said, "He's the trifecta.  He is wise, skilled and has good bedside manner to boot."   My kids and family are close. But this is Tomball, Texas?  Population: small!

I called Babe immediately.  He told the Houston surgeon that I was covered up in infection and my wound wasn't healing.   He said the Houston doctor said, "I guess you should just transfer her down here."  And that was it.  I told Babe that I had prayed so hard in those two hours and I had an overwhelming peace about staying in Tomball after talking to my doctors.  BUT....I wanted it to be a decision we made together. I needed confirmation of my peace.  Babe was in total agreement.

Our decision to stay in Tomball was confirmed over and over again.  Praise the LORD for that overwhelming peace I had about staying in Tomball.  My surgeon was exactly what I had been told:  The Trifecta.  He had a nurse practitioner that worked very closely with him in surgeries and patient care.  Their time with us was never rushed.  Between me and my family members we had hundreds of questions and they just took a seat.  Their confidence and communication was exceptional.  We had to talk thru a lot of surgeries, difficult choices and potential issues.  Their time was ours.  We felt the same about my assigned Infection Disease doc, as well as my Gastroenterologist. 

I had many different nurses on three different floors and every single one of them was amazing.  Not only were they compassionate, but skilled.  Two nurses that I remember specifically caught some very potentially dangerous issues....one that sent me to surgery for the 4th time just as they were considering releasing me.  Praise GOD she caught the leak I had thru my drain.  I had so many antibiotics going that I had two IV poles.  I was a difficult patient simply for all the meds that I needed every shift.  For the most part, I had a nurse in my room all the time for all the work they had to do for me.  I can count at least 5 nurses that either prayed with me or told me they were praying for me.  This was not a Christian hospital.  They were just amazing on their own.

Even the anesthesiologists were wonderful.  Having gone to surgery a total of four times at TRMC, I became a "regular" in the operating room.  By the second surgery, they all greeted me and waited on me hand and foot.  I don't think I was an exception. I think they just took that great of care of their patients.  For my last surgery, that was simply a closing of my incision (it was open and with a wound vac the entire time I was in the hospital) and pulling of a drain, they all high-fived me that I was on my way to healing.  Of course, it wasn't until the last surgery that they each expressed how sick I was, how far I had come and how great I looked.  I have one more surgery to go and I know they will take as great of care of me as they did then.

After a short 48 hour stint at a neighboring hospital that insurance forced upon us, I was grateful to be returned to TRMC.  Our experience at that interim hospital was not good and we are all in agreement that I would either be even more seriously sick or dead had we stayed there.  We don't want to re-hash that time.  When we returned to TRMC, I was being readmitted by the nurse when she needed to call my surgeon for orders.  She returned to my new room and said, "Dr. Harkins wants to move you to another room just around the corner."  My first thought was that it was higher level for telemetry or closer to nurses station...something pertaining to the increased level of care I needed.  When they rolled me into my new room, our jaws dropped.  I liked to refer to it as the George and Laura suite.  We had a living room and a kitchen in addition to extra square footage and the regular hospital room.  My surgeon came to visit and said that I deserved it for what I was going through and this way my kids could come up and comfortably spend time with me.  Who does that for a patient?  The extra mile...amazing.   I was in tears.

Of course....ask anyone.  I was in tears every day.

God Moments: Climbing Back on the Horse

I am reposting a series of posts, "God Moments" from my family blog.  I had surgery in May to remove 80% of my stomach secondary to my Crohn's Disease.  We thought it successful, but my incision wasn't healing.  And so the story begins...

I don't even know where to begin with this post.  Words really can't describe all the emotions that have occurred since June 15th.  My incision wasn't healing from my surgery, so my Home Health nurse sent me to a Wound Care Specialist for a wound vac.  When the specialist saw my incision and the drainage in it, she told me to go home and pack a bag and come back in 2 hours.  She admitted me to the hospital for a surgery and infectious disease consult.  I am not sure at what point I understood the gravity of my situation, but it certainly wasn't then.  After two days in the hospital with multiple tests, the doctors were in awe that I was upright.  I was severely septic.  And so began 5 weeks in the hospital and 4 surgeries to remove infection and repair the damage from my first surgery.

My hospital stay was long with some pretty dark and painful days.  I was highly emotional, as you can imagine, being away from my boys and being in the hospital for so long.  My mom told me multiple times that she prayed for me to forget my time in the hospital and I think her prayers were heard.  There is a lot I don't remember and probably some I have blocked out.  Much of it is too raw and frankly, I don't want to re-hash.  What I do want to remember and share are the God moments.  The moments when the ONLY answer was that God had me in His hands.  The amazing signs that we saw.  The unbelievably enormous group of prayer warriors I had praying for me.  I still tear up when someone tells me they were praying for me.  Being as sick as I was and so desperate to be well, prayer was and still is the best gift I could receive.  Prayer was my only hope.  To hear that someone took the time to pray for my healing is overwhelming for me.  Friends, family and even perfect strangers have told us their church, Bible Study, friends, were praying for me.  I believe in prayer and I know that I am where I am because of the power of so many praying for me. 

I am home now for almost 4 weeks.  By all reports, I am healing very well.  My incision is almost closed save one pinhole at the top.  (Still praying that that is a non-event).  I am getting stronger, my appetite is growing and I have gained 5 pounds after losing almost 40.  I still have a way to go, but my strength comes from my Father in Heaven and no medication tops being at home with my family. 

As I am able, I will share the good moments, the GOD moments....the moments where all the glory should be to God for saving me, healing me and enabling me to return to a healthy and fit mom and wife. 

That is where my eyes are.  Good health is an incredible gift and its free.  If you have it, don't take it for granted.  Now, I must work for it and I will not stop until I get it!