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The following journal was written to me about my experience with ARDS from my older sister Deanie.  After the journal is a letter written to me by my mother Bette.  Hopefully if you post this it can help to show what a family goes through when a family member is stricken with this terrible illness, and maybe help these people by knowing that they are not alone.  There are others out here that can and will support them through their times of hardship.

 

Luke Damron

ARDS survivor

 

 

Dear Luke,

This journal is an attempt to share with you what you experienced during your recent critical illness.  Because you were unable to recall this period of time, this summary will give you a daily account of events.

 

Saturday June 26 1999:  (approx: 12 mid-night)

You were admitted to the Shelby Hospital, and I’m certain you can recall most of your stay here.  Your condition began to decline around 9 p.m. Saturday evening with an increased shortness of breath and a greater need for oxygen support.  Despite an order from Dr. McHugh to transfer you to Mansfield, you stayed at Shelby Hospital until approx 5:30 a.m. on Sunday morning, when you became very critically ill.  Little did we know, in less than an hour and a half you would no longer be able to breath on your own.

Mom spent the night with you Saturday, and was instrumental in taking steps towards initiating the care you needed.  (Go!! Mom!!)

 Sunday June 27 1999

You arrived at Mansfield Med-Central at approx 5:45 a.m. via ambulance.  (Mom in the ambulance with you of course!!)  Dad and Deanie following behind you.  It was becoming more and more obvious to each of us that you were in "trouble."  You were taken to room 3044 in the (CCU) Coronary Care Unit.  Several people were waiting for you there, Respiratory Therapists, Nurses, Lab Technicians.  At this time you were receiving Oxygen at the highest possible level, and still you continued to decline.  You asked over and over where the Doctor was, and we reassured you he was on his way.

Dr. S. Vaidya arrived and immediately identified your need for ventilator support, as all other means to support your breathing had failed.  It was approx 7 a.m. on Sunday morning when you were intubated and placed on 100% ventilator support.  Because of the urgency to intubate you, the doctors were unable to completely sedate you for the procedure.  It took about eight people to hold you in place.  Dr. Bokar, (anesthesiologist) assisted Dr. S. Vaidya with your intubation, because it was a difficult one due to the build up of mucus in your throat.  These two doctors saved your life, and we later found out that no one in the room taking care of you initially, thought you would survive.  You were so unstable, that life-flighting you to another facility wasn’t even an option.  Mom, Dad, Dawn, and Deanie were all at the hospital just outside your room.  We knew we had to do something, and prayer was now the only means of helping you.  Grandma called to your room.   Father Brown, from ST. Peter’s arrived quickly after Harry Turner told him of the urgency.  We immediately called Aunt Sue and Uncle Arnold, so prayer was initiated immediately.  You were very unstable much of the day Sunday, we were given your official diagnosis of Adult Respiratory Distress Syndrome, ARDS.  Dr. S. Vaidya listed your progress as poor.  Our prayers for you continued.  You were placed on a drug called Tracrium which paralyzed your entire body, and Ativan and Morphine were given frequently to keep you sedated.  You were lifeless except for the rise and fall of your chest.  Harry Turner visited you today.

 Monday June 28 1999

You showed no improvement on Monday, but our hope was kept alive because you hadn’t worsened.  You remained on many antibiotics.  We were of course still in shock about everything.  Today Mom asked that Dr. Denton consult with Dr. P. Vaidya(infection Lady) to make sure you were getting proper antibiotics.   *Important sideline, Mom went out to the nurses’ station and paged Dr. Denton herself for this consult.  Dr. P. Vaidya came to see you that evening.  She too agreed that you were seriously ill.  She told us to pray very hard, and we did.   She even had her own kids praying for you.  Bato was here to see you today.

 Tuesday June 29 1999

Today you had problems with your heart.  Because you were receiving so much fluid you developed a condition termed Pulmonary Edema.  Your heart was working so hard your actual heart rate was in the 170’s, this was not something even a young heart could tolerate very long.  Dr. Denton consulted Mid- Ohio Heart and Dr. Fahmy placed a Swan-Ganz Catheter into your heart, to be used to actually measure the pressure, and fluid levels in your heart.  We were told again your chance for survival was not good, and again we prayed, and told everyone we knew to pray with us.   Today was when Dr. Denton told us you had a 40% chance of survival.

 Wednesday June 30 1999

Today your condition really didn’t change much.  Your heart kept beating pretty fast, but it wasn’t as fast as yesterday.  We decided to go to your apartment to pick up your truck, and just generally check up on things there.  Mom, Deanie, Joelle and Aunt Helen came with us to help.  I kept thinking to myself as we walked through your apartment that you still had so much to do with your life.  I put the thought of you leaving us out of my mind, and prayed like I never prayed before.  "God, please guide the doctors to restore your health."  I stopped in front of the picture of  "Jesus Laughing" in your dining room, and begged God to let you smile at us again.  Aunt Sue and Uncle Herman came today, and stayed until Friday.  Fr. John came today, and wants a ride on your Harley Davidson when you are better.

 Thursday July 1 1999

Today the Doctors said your chest x-rays appear to be a bit improved.  This was music to our ears.  You could open your eyelids just a bit when we would call your name, but other than that you just laid there.  We started a picture collection of you on your was on Tuesday, and by today people had brought in lots of good pictures of you.  We wanted everyone to see how handsome you are cleaned up.   Uncle Granville and Aunt Geneva came from Michigan today.  They got lost , and met a complete stranger who got in her car and led them to the hospital.  This stranger was indeed a guardian angel, she told them to let you know that she was praying for you.  As the days passed our prayers continued for you.

 Friday July 2 1999

Today Dr. S. Vaidya and Dr. P. Vaidya cam early to check in on you, they were leaving for the weekend.  They both said they were feeling more confident in your condition, and felt you were beginning to respond to the antibiotics.  Dr. Denton would be your Doctor until the Vaidya’s return on Tuesday.  Dr. Denton reduced your paralyzing drug to of what it was originally.  Within about two hours we noticed you moving your arms and legs and opening your eyes more.  Just to see you move again was excitement, but you got pretty restless at times.  Aunt Sue and Uncle Herman left today.  Brad came from Georgia at about 12 midnight.  You started moving your mouth today, and you mouthed to Dawn "help me".  As always our prayers and concern for you continued.

 Saturday July 3 1999

Dr. Denton arrived early in the morning and stopped your paralyzing drug altogether.  He said he expected you to be quite a challenge because of your young age and size.  You very much were a challenge.  You moved a lot and yes you even tried to pull out your tube.  Just ask Mom, Dad, and me.  Uncle Arnold and Aunt Bard came today from Ky.  You sat up in your bed, which transformed into a chair, but would quickly doze off.  You continued to receive your doses of   Morphine and Ativan to attempt to calm you.  Like most people receiving tube feedings, you were blessed with extreme diarrhea.  Mom and I spent many hours on poop patrol.  You reached for Zach today and held him in your lap.  I felt in my heart that God had started to answer our prayers.  Uncle Arnold prayed over you and placed a prayer cloth on your chest.  Prayer and God’s love had gotten you this far, and we knew you’d have a long road ahead.  And again our prayers continued!   Brad came back Saturday to spend the night with you, even after you kicked at him and Mom Friday night.

Luke it’s important that you know Uncle Bill, Aunt Helen, Jill, Joelle, Aunt Sue, Uncle Herman and others mentioned in this journal gave us immense support during the touch and go days of your illness.  I don’t know what we would have done without their presence.  Grandma and Grandpa DeSalvo headed the prayers from the Catholic end, while Uncle Arnold had the Baptists at it.  If prayer had ever moved mountains, it surely was evident to us now!!!  You were beating the odds and God was allowing you to do that. 

 Sunday July 4 1999

As I recall Sunday, I recall a very busy, hectic, emotional day.   You wanted up and out of your bed, your tube feedings continued to send you gifts of brown, but we all survived.  I was never so worn out when I  left the Hospital that day.  You were never alone, we all want you to know that.  Even when you were completely sedated, someone from your family, usually Mom, Dad, Dawn, or Deanie were with you.  Every heart breaking moment of thinking of losing you was worth the joy of seeing you come back to us, and you were.  Slowly but Surely.

Your medical condition was quite uneventful today.  The doctors had started to change your ventilator settings some days ago, but it seemed everyday now you were required to breath a little bit more on your own, and you were doing well, and of course our prayers continued.

 Monday July 5 1999               Happy 24th birthday

Today I had to go back to work.  I haven’t worked since last Saturday when all of this began.  I figured if you needed I  would be just upstairs.  Your daily chest x-rays had continued to show significant improvement.   You really were getting better.  A tremendous weight had  seemed to be lifted from our shoulders.  Again your ventilator settings had been decreased and recovery was now a matter being discussed.  Dr. Denton said you are now on the home stretch.  I think Mom has only spent one night at home since last Saturday, what a woman!!!  You couldn’t  ask for a better one (Mom or Dad).  The Doctors aren’t sure how many more days you’ll be on the ventilator, but we’ll probably know more after the Dr. Vaidya’s come back tomorrow.

 Tuesday July 6 1999

 Dr. S. Vaidya returned today and seemed impressed with your progress.  He again adjusted ventilator settings, and mentioned that Thursday may be a good tentative day to take your endotracheal tube out, and get you off the ventilator.   It has been nine long days, thank God for this piece of equipment that was able to keep you alive and with us.  As aggravating and uncomfortable as you may seem now, this breathing apparatus sustained you while you are becoming more aware of your surroundings and what is taking place now.  I hope this journal helps you understand what type of serious condition you are overcoming.  Thank you God for this precious answering of our prayers.

 Wednesday July 7 1999

The  Doctors still seem to think tomorrow will be the day to extubate you.  (Take your tube out)  Your breathing is actually being done mostly by yourself, the ventilator is now assisting your natural breathing pattern.   You have come such a long way.  People all over are continuing to pray for you.  I’m certain you can remember some of the events of this day, so I wont write much.

 Thursday July 8 1999

Today is the day we’ve all been hoping and praying for.   You’ve been on the ventilator for a total of 11   days, and today you will be free of that tube and the machine.  Dr. S. Vaidya was here early, he explained his plan and we patiently waited.

At approx.  11:55 a.m. your tube was removed.  What a welcomed moment for all of us.  You did it Luke!!  I will probably never again in my life, feel such a sense of relief and emotion. Mom, Dawn and Deanie were at your door.  God had remarkably answered our prayers, and I will forever remember this, and be thankful for his healing love.

This is my last detailed entry day to day as you can remember the rest of your stay at the hospital.

 Friday July 9 1999  Remained in CCU

Saturday July 10 1999  Moved to Coronary stepdown

Sunday July 11 1999  Fever started

Monday July 12 1999  Ct scan of Chest done

Tuesday July 13 1999  Fever remained

Wednesday July 14 1999  Blood clot noted, Thoracentesis done, went outside for first time

Thursday 15 1999  Oxygen removed, went outside

Friday 16 1999  Discharged

 

 Dear Luke,

It’s been about 2 months since you had to fight so hard for your life.  Sometimes it seems like a dream or a story someone else told me, but because I still catch myself thinking about the details and what could have been, it snaps me back into the reality of your physical struggle and our emotional struggle during this terrible illness.

I can finally read all the way through the story Deanie wrote in this book, and I thank her for taking the time to so this for you.  She covered the details very well, but I would like to add more about my feelings and the love of your family, and your strength during this time.

From your first trip to the ER in Mansfield on June 24th, and your two trips in Shelby the following day. I was really worried and kept denying that anything serious was wrong, but I could see how restless and miserable you were, and as it kept going from bad to worse, and your respirations kept becoming more abnormal. I kept thinking about the 22 year old girl in Arkansas that we had heard about when we were there that that died suddenly from pneumonia. But of course that couldn’t happen to you.

I felt some relief when you were admitted to Shelby hospital at midnight Friday.  A few days of I.V. antibiotic therapy and you get well.  And your back to work in a week.  Well, that was short lived when you started to go down hill early Saturday evening.  By chance?  I saw Harry Turner (the local Deacon of our parish) in the hospital lobby Saturday afternoon and he came to your room and he gave you communion, and that was good.  It was almost like he ended up in your room in preparation for what was to come.  So Jesus could be in your heart during the ordeal to follow.

Your pain was being controlled by Tylenol 3 and it helped your cough too, but I was really uneasy about your respirations not improving.  When I returned to your room after church Saturday night, I didn’t like the way you looked and acted.   After a while, I expressed my fears to the nurses, and Dr. McHugh came in, reviewed your x-rays and lab work, and agreed with me that something more was going on and made arrangements for admissions to Mansfield thru Dr. S. Vaidya for 8 a.m. Sunday morning.   The plan was for ICU, so why weren’t they taking you now?  I was frustrated, but you said you were okay./  Deanie came back later that night and wanted to stay with you, but I had already decided that I was going to watch over you throughout the night.

It was getting tense, you slept on and off, and I sat in a chair and dozed briefly, but mostly watched your breathing worsen and your O2 level slowly drop.   You told me to go home around 2 a.m., and I’m glad  I didn’t listen to you, or I may have never seen you alive again.  Things continued to get worse, and when your respirations went up to 40 a minute (normal is 16 to 48), and your O2 level down to 78-80, I told the nurses it was time to get you to Mansfield now.  I paced the halls back and forth past the nursing station to make sure they were working on this.   Even making suggestion to them.  ( I bet they were having bad thoughts about me, but a mother will so anything when her child is in danger)  Those next 2 -   3 hours were the most stressful, fearful hours I can even recall.  I didn’t want to scare you, so I remained calm in front of you, explained what was going on, and you just went along with the flow.

I called Dad and Deanie around 4:30 am or so when I knew the ambulance would be there in a half hour.  I couldn’t take being alone much longer, and I was so glad ro see them when they arrived in a short while.

Before you left your guardian angel intervened, when the RT girl couldn’t get into your artery for a blood level reading.  If she had the would have intubated you on the spot, and I don’t want to think about the results of that one.

A lot was going thru my head on the ambulance ride to Mansfield.   I could sense the uneasiness of the medics, and he was driving as fast as he could.   Was this it?  We prayed with you, you had communion, now were you going to die?  Was this all a plan?  No, I wouldn’t give into that one, and from then on I trusted that God wouldn’t take you away from us and put our family thru such a great major loss.

It got harder to stay in this state of denial after we got to Mansfield.  We called Dawn, and she arrived at the hospital very quickly.  We were all there holding on to each other as we waited outside the ICU as a team of 8-10 nurses, Doctors and RT staff put you on life support.  Up to this point, you were alert and scared, but remained calm, and we tried to reassure you as much as we could.

We called Grandma and Grandpa, and then Harry, and he called a priest in from ST. Peters that arrived shortly after you were intubated.  When the crew in your room realized he was there for the last rites, they all stood back for the anointing prayer ritual.  Fr. Brown asked me to assist him by holding the holy oil and responding to the prayers.  It was one of the most emotional things I ever had to do, but I had to do it for you.  They only allowed us in the room , but the rest of the family wasn’t far away and I’m sure that God heard their prayers too.   I had a little trouble reading the prayers thru my tears, but we got thru it, and I felt better.  Then just briefly I thought about Harry, and communion and now Last Rites.  Was God getting ready to take you?  No!  I trust that he won’t do that.  It was hard to keep my thoughts straight when you were laying there so helpless, with a tube down your throat, taped to your face, unable to move, unable to communicate, and the sound of the ventilator giving you the air and the O2 you needed to stay alive.  But I wouldn’t believe what the eyes of the ICU staff were telling me.

From that moment on, a family member was with you at all times.   WE were going to see you thru this, we never left you alone.  The Doctor explained that you were purposely paralyzed so your lungs could have total rest.  But you could hear, and I know you sensed our presence and knew that you weren’t alone.

We talked to you a lot and told you where you were and why you couldn’t move and why you had to be on a ventilator and that we loved you.  We held your hands, we touched you, we prayed for you, over and over.  All of us, Me , Dad, Dawn, John, Deanie and Todd.  Grandpa and Grandma couldn’t be there a lot, but you were always in their thoughts and prayers.  (having Granma pray for you is a big plus,  because I think she has special connections)  You already know from Deanie’s story about all the prayer chains and other special people (relatives and friends) that kept you in their thoughts and prayers.  Della and Vella laughed and said you had so many prayers that God just thought  he better let us keep you.

In the next day or two Deanie Brought in family pictures of you for the bulletin board in your room.  Everyone liked those.  This gave you an identity as a son, a grandson, a brother, and uncle, but most of all you as a young loving person waiting to return to the life you had before your illness.  You were so much more than just the poor guy in room 3044!

We also kept a radio playing on low in your room in hopes it might relax you and keep you in touch.  So you would be less likely to want to let go.

We all practically lived at the hospital that first week.  Dad took the week off and Dawn and Deanie were here most of the time too.  John and Todd came when they could because they had to take care of the kids so your sisters could be here.  A lot of relatives were here too, and together we all supported each other, like our family does so well.

Any response we could get from you would raise our spirits, and of course, we kept thanking God you were still with us and not getting worse.  At least not your respiratory status.

When your heart rate started to increase and stayed up there for quite a while, it got pretty tense.  That was the same night they reinforced that your prognosis was not good, and I did some pleading for a change in your care.   It’s okay for a mother to break the rules when she’s trying to save a child.  When Dr. P. Vaidya came in that night, she was the glimmer of hope we needed.   She talked with us, made some changes in your medications and sid she had people sicker than you get well.

We really prayed that night and hung holy cards above your wall by the bed, and taped a gold miraculous medal on your gown.  Again we supported each other emotionally.  We also spent more time talking with you and telling you that you would be okay.  We also (especially John and I) rubbed your arms, and legs and chest with our hands to try and give you some of our energy.  We were desperate to help you in any way we could.  I think John may have spent the night that evening.

After that night, you slowly started to improve and gradually were taken off the paralytic drug so you could move and begin to communicate with us again.   You were afraid and restless, but between our support and the Morphine and Ativan, you were pretty good.  Actually better than what was anticipated.  I only had to tie your hands to the side rails a few times during the night, so I could get some rest.   You got more relaxed gradually, and didn’t finger you ET tube, but accepted it.  You started to fight to get better.  You liked the bed in the sitting position and you started to write us notes.  We couldn’t read them at first because you had trouble coordinating your pencil, even threw it across the room once.   But you kept trying, and everyday your writing was more legible.

You kept us busy during this period, but we didn’t care.   We were just glad you were coming back to us.

We were getting pretty good with the sign language, but finally the tube came out , and you could speak to us again.  We were all so happy (Deanie, Dawn and I) were there for the big event, and we all cried together with you.

Even after you could talk and ask questions, and do a little more for yourself, you still didn’t want to be alone.  Almost dying can be a pretty scary experience and I’m sure you had a lot to think about.  We continued to stay with you day and night.

You spent more time out of bed and started waking in the halls with physical therapy. (remember your little substitute motorcycle)?

Finally you went to stepdown, and you can remember most of that.

I still spent most of my day with you and Dawn stopped everyday after work and Deanie popped in and out a lot while she was at work on 4- WA.  Dad was still there a lot in the evenings, then I would come back after hours and watch a movie with you.  You weren’t sure about spending that first night alone, but you did fine, even if you didn’t sleep much.  A sleeping pill cured that the next night.

The worst was over.  It was a happy day when you came home.

I always like to search for meaning and purpose of why things happen.  Are most experiences the result of coincidence or is there a plan and a sequence leading up to events?  Can we sometimes have the power to control or change the outcome thru trust in God, prayer, and believing in your own perceptions of the situation?  I think so!

Dad and I are so happy that our son is well and will have a future.   We were so scared and we thank God that you are alive.  Our prayers were answered.  God gave you back to us, there must be a plan.

We know now that trust in God and the unconditional love of a family can truly work miracles.  You are proof of that.

 

Love and Prayers Forever,

Mom