In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Saturday, April 26, 2014

Shane's Story - Chapter 16

It wouldn't be a complete story without including how Shane lives on and how I survived grief.

Yes, that's "survived grief".  Because not everyone does.  There is a word for the loss of a parent (orphan) or the loss of a spouse (widow/widower) but no word in the English language for the loss of a child.  I thought depression from raising a special needs child was hard.... that was a cake walk compared to grief.

I wish I could say that Jeremy and I made it through grief together, but we didn't.  We both handled it in our own ways, away from each other.   We were still young - only 25 when Shane died.  Too young to cope with something so horrific.  My entire world had revolved around Shane and then he was gone.  People gathered around us when he died, then they were gone back to their normal lives.   The world kept going on without my son... didn't everyone know he died?   How could they act like nothing had happened?   Jeremy went back to work and I as home.  Alone.  All day.  People get back to their lives and stop checking in on you after a week or two.  It's human but being alone in grief is like solitary confinement and it's you alone with your memories, thoughts, regrets, grief.   I kept waiting for Shane to walk down the hall with all his toys or bang a door shut (which he always did when someone left a door open).  I thought I heard him blow raspberries.  I found his toys under the sofa where he threw them.  His formula was still stockpiled in the kitchen.  His schoolwork still stacked up.  His dirty clothes still in the laundry.   Wasn't he just right here???  Every day felt like it took me farther and farther from him.  We were so blessed to have so much time with him and to have him home but his memory was everywhere, there was no escape.  Not at home, not at family members' homes, not in the car, not even at the grocery store... he was everywhere and there was very little respite from the suffocating memories and grief.

Making it harder was having a tremendous amount of guilt for being a grieving CDH parent who had a ton memories and photos and time with my cherub when so many hadn't.  I didn't fit in with the survivors anymore and I didn't fit in with the grieving parents either.   I was in between both worlds and I now knew enough to be able to support almost any CDH family from first-hand knowledge.  It was a degree I didn't want.  I felt like I couldn't/shouldn't talk about Shane because his story terrified expectant parents and parents of survivors and saddened grieving parents.  I ran a support group but needed support myself.  I was a mess.  Don't get me wrong, the charity members were amazingly supportive but how could I lead now when I was so weak?  I had been so full of myself, so sure that I had some secret weapon to beat CDH.  I was put in my place.  I knew nothing, I probably never did.  I had just tried my best to be a good mom and we were blessed.  It was never in my hands.

Jeremy and I tried to make it work but we didn't have the coping skills or maturity to stay married.  We were still just 25.  Too many bad things had happened to us during 7 years.  We only reminded each other of pain.   We haven't talked for 10 years now but I wish we did.  He's the only other person in the world who knew and loved our son the same way I did, has the same memories of him that I do.  We will share that always.   I wish him well and hope he found happiness again.

The charity secretary at the time, Judi, took over for me for a while and did an amazing job. She drove to my house when Shane died - she was the first person I called other than my parents from the hospital.  She was an anchor for me through everything and being a grieving CDH mom herself, she knew what to do, what to say.  We were a great team and she had unlimited energy and passion to help CDH families like I did.  2 years after Shane's death to the day, Judi was in the Pentagon during 9-11.  She called me during the event, terrified.  That's the type of friends we were.  She survived but was sickened by asbestos and is no longer involved with us because of severe disabilities.  I really hate September 11th; it took 2 people from us.

Within those 2 years, I also lost my father-figure, my grandfather.   My baby sister was diagnosed with terminal cancer.  Judi started becoming very ill.   I did a lot of driving back and forth to all of them.  Alone.  Being alone in a car with all your memories and grief is hell for a grieving parent but I learned to cope with it.

What got me through when I really had NOTHING left?  My sister needed me.  Her 3 kids needed me.  She never knew it but she saved me.  Watching her fight so hard to live made me feel like an idiot wanting so bad to give up.   God didn't hear my pleas to take me instead of her, like He didn't hear my pleas to take me instead of Shane so I had better straighten up and get out of my self-pity hole because she needed me.  When she took her last breath after fighting Rhabdomyosarcoma for 2 years... I felt Shane in that hospital room with us.  I know he was there to come get her and no one will ever convince me otherwise.

After she died, grief set in again.  Now what?  In all it was about 5 years of non-stop rolling waves of grief.  It took me 2 years to go back into Shane's room and only then because I had to move.  Packing up his things was like burying him again.   Saying good-bye to my family, my home... it truly almost broke me.

But it didn't.  It took me a few more years to grieve my sister and grandfather now too and get my life back together.   During this time the charity work slowed as I focused on helping with my sister, her kids, divorcing, getting a job, moving, surviving.  Judi was sick and unable to help.  I asked for volunteers, I asked for help and no one stood up.  11 years later I still get comments about how CHERUBS wasn't there for a few years (we were here, the on-line support was still there).... but I was just a young, grieving mom volunteering to try to help others when I could.  I did the best I could at the time. 

Fast forward a few years.... and I DID survive!  I became stronger, independent, self-sufficient, ran my own company and slowly rebuilt my life.  I got up every day and forced myself to look forward instead of backward.  I wasn't going to stop living too.  And when I was able, I grew the charity more as I could.   Grief never ends.  You never stop missing your child but it does get easier to cope with and manage grief.   There comes a point when you stop crying and start smiling missing your child.  I don't know exactly when it happened for me... maybe around year 5.  But it happened.  I wouldn't trade a single, solitary minute of my life with Shane or my grief if it meant never having him.  He was and always be the best part of me and the biggest part of my heart.

8 years after I lost Shane, 6 years after Jeremy left... I met Craig.  He gave me my laugh back.  He taught me how to have fun and enjoy life and see there are other things in this world except CDH and grief... imagine that!   We were married in 2008 and I became step-mom to twins, Braden and Garret, who are now freshmen in college.  I get to be a step-mom to these 2 boys I love as much as if I gave birth to them - even though they were teenagers when I got them.  Let me just say that dealing with "normal" parenting issues has been an eye-opener but I feel so blessed... normal stuff like teenage years and bad grades and smart mouths!  Not hospital stays, surgeries, therapies and feeding tubes.   It's a completely different world that I love equally.   Having a family again means everything to me.  I have 3 sons and a husband that I love more than anything on earth.

I never had more kids of my own.  I desperately wanted to but it wasn't meant to be for me I suppose.  But I have 1000's of kids through the charity, my boys, my nieces and nephews.  I am surrounded by a lot of love and a lot of children... what could be better than that?

Now, I work just 1 job - at CHERUBS, so that I can have a "normal" life and time with my family.  Not that I don't still work 60 hour weeks sometimes!  :)

I never thought I could be happy again after losing Shane.  I never thought I'd have a family again or a life that meant anything without him.  I was wrong.  Now each day doesn't take me farther away from him but closer to him.

Friday, April 25, 2014

Shane's Story - Chapter 15

(WARNING:  This may be too hard to read for many but it's part of Shane's story)

The funeral was held back in Virginia in the little town where we graduated, married, Christened our son and now said good-bye to him.

Shane was buried on my parent's property.  The county where my family lives is so remote that there were no cemetery laws.  What was once fruit orchard was turned into a cemetery in 2 days thanks to my father and friends who took the trees up and created a family resting place.  You see, other than my very old great-grandparents from Rhode Island, no one in my family had died for 50 years.  Death had only touched me through the funerals of other cherubs and church members before this.   We had no plans of where to be buried, much less where to bury our son.

I don't remember the visitation the night before funeral very much except that my best friend was there and friends from high school.  I remember walking around handing other people tissue, trying to comfort them instead of just sitting and grieving.  I didn't want to sit still, I had to much to do.  It was the last thing I could do for my son and it would be done right.

The funeral director had very little experience with children (thankfully) and they tried hard to do a good job... but Shane didn't look like himself at all.  I make the mistake of kissing him good-bye on his forehead. I wish someone had warned me not to.  Shane was laid to rest in a Sesame Street outfit, his sneakers, wearing his favorite baseball cap and his glasses and holding his baby and surrounded by his favorite toys.

We made his funeral programs ourselves.  No peach, floral, cookie-cutter good-bye programs for my son.  I designed, printed and folded them.  Because I was his mother.  They were bright, cheerful,

The tiny church we had one Christened him in was now full of people saying good-bye to him.  Every pew was full and people stood outside.   His uncle David (a preacher like my father-in-law) gave the eulogy though I honestly don't think I heard a word he said but I'm sure it was beautiful and appropriate.  Shane's casket was open, against all advice from my mother.   But I had to see one last time.  I said good-bye to him with Jeremy and then the casket was closed. That is a sound no parent should ever, ever have to hear.  That is a sound that will stay with me until the day my own casket is closed.

It was a long drive from funeral home to the gravesite.  We rode with Shane's godparents, chauffeured by the funeral home.   I have no idea what we talked about or if we even talked.  I don't know if I cried.  I just remember looking at the floor board a lot for some odd reason and feeling like I was watching a movie of someone else's life because surely this couldn't be the day my son was being buried.  Not my son. He had beat CDH.  Many times over.  He had proven the doctors wrong.  He was our miracle.  He was the center of my entire universe.  I had dedicated my life to him and to helping other CDH families... wasn't I assured some cosmic guarantee or life insurance on my child?  Wasn't I God?   Hadn't I done everything right?  This couldn't be happening.

The gravesite was down a long dirt road that passed my parent's home.  Our car drove right to the cemetery while others lined up and parked where they could.  Shane's nurses drove from NC to VA to be there.  CDH parents had driven 100's of miles to come to my home (Tara, in the middle of the night drove from OH to NC to be with me... there is nothing I can ever do to repay her for that), to the funeral or the gravesite.  There were flowers, cards and teddy bears from around the world that arrived from our dear CHERUBS friends.

At the graveside we released 6 Elmo balloons for every year he spent here and 100 blue, red, and yellow balloons for every year he should have spent here. It was raining that day but it stopped just as the funeral started and the clouds actually parted over the cemetery. We had a Sesame Street cake at the wake (the wake was after the burial). It was not a typical funeral, but he was not a typical kid. We wanted to celebrate his life.

After everyone had left after the wake I was outside in my parent's yard and pollen from a tree I had never noticed before and never remembered having pollen starting falling and blowing around like snow. The pollen was just the shape and size of little feathers from the wings of cherubs. It blew around me like a scene from a Christmas movie and I was very peaceful at that moment. Maybe it wasn't pollen. Maybe it was Shane letting us know he had reached heaven and was now with the other cherubs.
We had a memorial service in NC the following week and more members of CHERUBS came, including Susie and Jim from SC and our dear, dear friend, Rhonda, who was with us in the very beginning when our sons were hospital roommates so many years ago. One of our members, Beth, had even come to visit Shane when he was in the hospital. I don't believe there could ever be a better group of people like we have in CHERUBS.

His headstone has pictures of Elmo, Big Bird, a truck (he loved his dad's truck), and one of the logos I had drawn for CHERUBS web site- a cherub wearing suspenders and glasses (one I had created to look like Shane). How do you fit an entire, even though short, life on a stone? We wrote a few words about Shane on it, his name, the dates, and also carved on the stone is "Psalms 18:10"- He flew upon the wings of cherubs, yeah he did fly like the wind.

(to be continued)

Thursday, April 24, 2014

Shane's Story - Chapter 14

September 11, 1999

Jeremy woke me up at about 4pm. His parents were visiting and Shane was "acting funny" so I got out of bed. When I went into the living room, Shane was sitting in the floor, surrounded by toys, Sesame Street blaring on the television, holding his best friend, "baby" (a stuffed Precious Moments pillow) and his Mimi (Grandma) was doing chest p.t. on him. He was coughing and the ends of his fingers were a little blue. I started to give him an albuterol treatment and sent Jeremy to the store to get a bulb syringe to see if we could clear his throat for him because he kept pointing to his mouth. I finished the treatment and started doing chest pt with Shane sitting in my lap. He was getting a little bluer so I called 911 and told them to send an ambulance just in case. One minute he was sitting there, seemingly ok except for the cough, and then he just passed out. I laid him down and tried starting beating his chest and shaking him to wake him up. Jeremy walked in just as he passed out. He was turning blue and I couldn't see his chest moving. I tried to get a pulse but I couldn't. I called 911 again, screaming "Where is the ambulance, he's coded. I called 5 minutes ago and we only live 2 blocks from the hospital!!!!!", all the while trying to do CPR. I handed the phone to Jeremy's mom so I could do mouth-to-mouth and when I went to blow in I could hear gurgling. I could barely get air in.

Jeremy's mom was on the phone and running around the house getting me the oxygen tank, ambu bag and anything else I screamed for (God bless that woman for being there and being calm and being such a huge help). While I was doing CPR, his chest tube blew. I was flashing back to the day he was born throughout it all- I could hear words coming out of my mouth, I was doing CPR mechanically without thinking about it, and yet an entirely different conversation and experience was going on in my head. It was like I was watching and not participating and all I could think was "Please God, no, please God, no….".

The ambulance finally got there. It was probably only 10 minutes from the first 911 call but it seemed like forever. I TOLD them I was riding along, they didn't want me in the ambulance. They had an ET-tube in Shane and were trying to get an IV line in. We got to the hospital and the staff wouldn't allow me in the crash room. I stood outside the door screaming that I was his mother and that they didn't know his history and I was no typical mom and they had better kill me before they were keeping me out of that room. One of the doctors finally relented when I started rolling off Shane's medical history and medical terms that he probably couldn't believe were coming out of this strange woman's mouth who obviously didn't look like a medical professional, having not even had time to brush my hair and wearing a stained sweat suit (stained from Shane). When I finally got in there I talked a nurse into finding Jeremy (who had followed us to the hospital) and bringing him in and talked the doctor into calling Shane's surgeon (thank God for Dr. Taylor explaining to him who we were and what we knew, the doctor's attitude toward us did a 180 after that phone conversation). Jeremy and I just stood there, holding each other, and watching the monitors. They couldn't shock Shane because he still had systolic pressure. It took an hour to get a good line in him (and surgery to get it). There were a dozen people in there working on him and every 10 minutes or so the doctor came over to us and told us that they weren't getting any response, even after pumping him with Epinephrine. I only left the room for a few minutes to call my family.

In what seemed like only seconds, 2 hours had passed and then I had this calm come over me. I always told other parents that they would "know when it was time to let go". Now we knew it was time. After 2 hours and pnuemothoracies (air in his chest cavity from all the bagging), his diaphragm probably totally gone, and his brain irreversibly damaged, Shane was gone. Shane was gone before we even left the house. The doctor came over to us again and we told him we knew it was over. I asked them to keep working on him long enough so that we could say a prayer and Jeremy and I could hold him when they stopped. All the doctors and nurses held hands with Jeremy, his parents, and me and even the doctor said a prayer. We held him when they stopped bagging him. I was so numb and I didn't want to let him go and at the same time I just wanted to run away. We left so they could clean him up and they brought a rocking chair down from the maternity ward. I called Judi and told her what happened and in a few hours she was on her way to NC to be with us and she was calling some of the members. My family got there and we took turns holding him, even my little nieces and nephews wanted to hold him. They were confused but not scared and I'm glad they got to say good-bye. We had to take Shane to the deserted x-ray waiting room to hold him because they needed to empty the crash room. We held him for hours and took pictures and cried and cried. We told him it was ok to go to heaven about 10 times before it felt like he left. He didn't want to leave us and it broke my heart to tell him to go. I just couldn't comprehend that I would never get to hold him again. I never wanted to hand him back to the hospital.

Hi everyone,

This is the hardest thing I've ever had to write and I don't know how to
say it but bluntly because right now I can't handle getting emotional in
this e-mail. Shane coded at home today. His pneumonia had gotten
worse, but we didn't know it and he was coughing so I gave him an
albuterol treatment and did chest pt and he just coughed and passed
out. We called 911 and they tried for 2 hours to bring him back, but he
was gone. We got to hold him and do so many things that parents like us
do (it's so hard to be a part of that group now). We're still in shock
and I'm praying we'll wake up tomorrow and none of this will be true.
He died at home, watching Sesame Street, surrounded by his toys and the
things he loves and right now that brings us so much comfort amidst all
this guilt of "why didn't we.... ?". It hurts like hell and I know it
will hurt worse when it sinks it. That little boy was and is our life
and I can't imagine what tomorrow will be like without him. We know
he's not suffering and in pain anymore- but now our pain and suffering
begins. Please say a prayer for him and us.

Dawn and Jeremy
parents of Shane 1/28/93-9/11/99 (it took me 20 minutes to type that,
it's the first time I've ever had to and it hurts)

(to be continued)......

Wednesday, April 23, 2014

Shane's Story - Chapter 13

1999 started out great... Shane turned 6 and the members of CHERUBS threw him a surprise birthday party (surprise to me too!) at the first ever charity event.  
But by summer things started to take a very bad turn.
In July he started coughing so we took him to his pediatrician, who was very afraid of Shane's medical history but we live in the sticks and don't have many options for local doctors. After demanding an x-ray we saw the x-ray film- the entire left side of his chest was whited out as if someone had taken paint to the x-ray. We left the pediatrician's office and went straight to Shane's surgeon. We all thought it was pneumonia and he was admitted to the hospital and put on antibiotics. When it didn't clear up and he got worse, we guessed he had reherniated (the x-rays were so bad you couldn't see any organs at all on that side) so he went into surgery. He had reherniated- for the 6th time. Shane never had much diaphragm to work with and the empty space between his lung and his diaphragm never filled, so it created a vacuum and basically it "sucked" the Gore-tex up. Apparently he had been reherniated for a while and the Gore-tex was wrapped up like a ball and had torn a tiny hole in his stomach and in his lung, allowing formula and stomach bile to enter his lung. This is called a gastroplueral fistula and is so rare that there are only a handful of cases in the last 30 years. We only found a few research articles on it and Shane's surgeon had never seen anything like it before. She repaired the hernia and sutured up the holes and we thought we'd be going home in a few days, but the pneumonia got worse. The hole in his stomach was so high up and in such an awkward place that the suture didn't hold. Shane was also so malnutritioned because of a lack of calories with the formula he was on (he never did decide that eating by mouth wasn't a bad thing) that his body couldn't heal properly. We decided to pump him with extra calories through his intestines and keep his stomach drained so that his lungs would clear and he would heal. Through it all he was a happy little trooper. He played in the hospital, rode around in a wagon, the nurses were tripping over toys (matchbox cars make a very cool sound when they hit tiled floors), and we had to have a room with a VCR so he could watch Sesame Street. We spent almost 2 months in the hospital and when we came home he still was fed through his intestines, his stomach was still being drained, he was on antibiotics, and he had to sit up all the time, even while sleeping. We came home the beginning of September, deciding that if the holes didn't close by the first of November he would have had enough nutrition to have surgery again.

On September 9th we went for our weekly visit to see Shane's surgeon. He was coughing a little, but we thought that was a good thing because he was clearing his lungs finally. Everything looked good and we drove the hour trip back home. All the way home, the kid who always looked out the car window and smiled at all the transfer trucks wouldn't take his eyes off me. He stared at me for an entire hour and for an entire hour I worried and wondered about why he was doing that. The next day he wanted me to sit beside him and play with him all day long. It was the first day in months that I didn't work (even while in the hospital) and just sat and played with him and held him. He was never a real clingy child and I wondered then if we should take him back to the hospital, but I didn't know what to tell the doctors, "He's clingy". I stayed up with him all night that night and finally went to bed when Jeremy got home from work at 11am that Saturday morning. 

Tuesday, April 22, 2014

Shane's Story - Chapter 12

Written 11/10/97

I wrote that story (previous chapters) almost 2 years ago, but it seems like a million years. Reading it, I realize I was still in my "martyr stage"; a stage all of us parents of disabled children go through. Now, I'm back to "normal people stage" and Shane is almost 5. He is walking (actually running around the house and leaving a trail of toys behind him), eating a few ounces by mouth at a time, is completely off the ventilator and oxygen, and had his trach removed a year ago. He wears glasses and hearing aids and is going to a preschool for the deaf. He begs constantly to watch the SAME episode of Sesame Street over and over again; I guess that’s typical pre-school behavior. 
We only have "respite" nursing care at home now- no more strangers practically living with us. His nurse goes to pre-school with him twice a week, to take care of his feeding and medications while he is there. We no longer go to doctor appointments every other week; now we go every other month. He still winds up in the hospital a few times a year for viruses and pneumonia, but luckily they have been short visits. No more physical therapy (Shane has reached all his PT goals); only occupational and speech therapy now, with visits from a sight therapist to keep an eye on his vision. He has a Mic-Key feeding button now, which is actually helping to anchor his stomach into place. He throws tantrums, pouts, and flirts, like most "normal" kids his age, he truly can melt me with just a smile. Looking at him now, it’s hard to believe all we went through. 
Jeremy and I doing well. We are now living the "American Dream", ok, the warped version, but it’s a dream! Haha. We bought another house, have settled down in North Carolina, Jeremy has had a wonderful job for a few years now, and I have Shane and the support group to keep me busy and on my toes. I still battle depession on and off (a result of Post Traumatic Stress, which most of us parents of sick kids get) but life can be good! We have thought about trying for another baby; actually we lost another one (#2) through miscarriage this past summer. Shane still carries around that stuffed Precious Moments’ cherub doll (ok, so it’s "baby" #5, the first 4 fell apart from all the trips to the washing machine, but he doesn’t know that). Rhonda and I have made contact and she is now a member of the group; both of her children are healthy and happy, but Preston will always be a part of all of us.

update 7/5/98

Shane is doing really well- still carrying around "Baby", watching Sesame Street non-stop, eating much better by mouth, has learned 10 sign-language signs, and starts home-school this fall (after going rounds with the local school board who refused to put him in the county's only deaf class and wanted him in the L.D. class instead- where no one knew sign language, even though the deaf class is only 1 year ahead of him and has only 3 students). He plays with cat, loves going outside and riding in the car, and loves to be read to. He makes the silliest faces and has a wonderful sense of humor- you just can't help but smile when he does. I feel like the luckiest woman in the world to be chosen to be this wonderful little boy's mom.

1998 has been hard on us- a house fire (in which Jeremy was seriously injured), e-coli (food poisoning from seafood), a tornado that hit our house, yet another miscarriage, I lost my best friend, my parents are divorcing after 25 years, I had a hard time coping with the birth of my new niece who was born near the due date of the baby I lost last year. With all that's happened, my depression really hit hard for a while as I tried to cope with everything.

Now we're back on track. I have a new job, the support group now covers 47 states and 8 countries and is keeping me busy- so you can say I work 2 full-time jobs. We're trying for another baby again and we finally feel like life is going well and we're almost "normal". I knew we would have it rough after Jeremy broke that mirror 3 months after we were married! LOL 2 months to go and the 7 years of bad luck is over!

(to be continued...)

Monday, April 14, 2014

Shane's Story - Chapter 11

(taken from a post written in 1996)

As I write this, Shane will be 3 in 2 weeks. He now wears hearing aids and glasses. I heard him cry for the first time this past summer when we started to use a Pacimuer Valve, a small valve fit over his trach that allows him to make noises by teaching him to exhale through his mouth and nose. He started to crawl after his forth surgery and is "cruising" now. God willing, he will walk soon. The feeding tube in his nose was removed and replaced with a more permanent one placed directly in his stomach through his abdomen. He is starting to eat and drink by mouth and maybe someday, when he can eat as well as he needs to, the tube in his stomach will be removed. He can't talk yet, but he is very expressive with his facial expressions. His trach will be out this spring. He runs the house and gets into everything. He's a stubborn as a mule, but I suppose that's what has kept him here. It's impossible to discipline him and where most children learn not to climb or get into things after they fall once or twice, Shane is so used to pain, that when he falls or we pat him on the butt to keep away from things that could hurt him, he laughs hysterically.

Jeremy now has a new job with better benefits. I have started college and started a support group for the families of children like Shane. Jeremy and I are considering having another child. Shane is doing well and will be at least 4-years-old before we have another one, and the time seems right. Of course we are terrified at the thought of having another sick baby, but the doctors and research have told us that the chance of that is rare. Like the parents of all babies, sick or healthy, we long to do "normal" things; come home a few days after giving birth, breast feeding, and having baby-sitters instead of nurses. We will never again be oblivious to what might happen, but we need to, and want to, have a good birth experience. Besides, Shane is getting a little too spoiled and another baby would do us all good. No matter what happens, Shane will always be a little more special, that's a feeling all mothers of disabled children have. I love him more than life itself and I would trade places with him in a millisecond. He the sorrow and joy in my life, as all children are to their parents, only multiply that by 100 when you have a disabled child. Every step forward and every step back is more noticed and more dramatic. It's hard, but I wouldn't trade it for anything. He has made me a stronger person.

I still get into arguments with doctors and nurses, but I know how to choose my battles. I have alienated quite a few of medical professionals, but I know Shane and his medical history best because I deal with it everyday of our lives. The latest battle was with a nurse who wanted to put Shane in a hospital room with 2 preemies when he was admitted with a virus. After asking to be put in a private room and told "no", I had to go into my "mom from hell" mode to get us moved and within 5 minutes we had a private room. There was no way I was going to subject to those two tiny babies to Shane's virus when they already had their own health problems to fight. Unfortunately, many of us moms with sick kids have had to learn about the "mom from hell" mode. Jeremy has supported me all the way. We no longer go to the hospital where Shane spent his first 10 months.

Because of Shane, and our experiences of having a child with this birth defect, I started a support group. It is the only support group of it's kind in the world. This defect strikes 1 in every 2500 babies. The cause is not yet known. It is not a prejudiced birth defect. It affects babies of healthy families, of parents of any age, of any color, of any religion, and any financial status; no matter how good the prenatal care. Most are found during routine ultrasounds. It can strike alone or with other birth or genetic defects. Fifty percent of babies born with this do not survive. Most survivors of this defect do not have any complications (other than feeding problems) or more than one repair.

I now know, after researching that the "flu" I had during my pregnancy, along with stomach pains, what I then thought was "more amniotic fluid that I had seen in birthing videos", and all the weight gain just in my stomach was undiagnosed polyhydramnios, excess amniotic fluid. Polyhydramnios is an indicator of fetal abnormalities. If my doctors had diagnosed me correctly maybe they would have diagnosed Shane's problems by ultrasound and we could have been prepared and had him at a trauma center better equipped to care for him.

I swore to myself that if I could help it, I would try to prepare other parents of children with this birth defect. These parents need to be better informed so they can make educated decisions for their child's health care. They need to know they are not alone. Most people have never heard of this birth defect, and if they are lucky, they never will. I started this support to help these parents the way Rhonda helped me. I wrote a newsletter in my kitchen, took it to a printer (who donated the service), and mailed it to a couple hundred parents and doctors. In 12 months, we now have families plus hospitals, universities, and research centers across the country and in Canada, Europe and Australia in our membership. The response has been overwhelming; this support group has been needed for forever.

Rhonda and Jenny have each had healthy baby girls since the deaths of their sons. We no longer keep in touch, it's a little uncomfortable for all of us; they have healthy babies but still grieve for their lost children and I still have Shane. They will always be in my heart, and I think they would agree, that our friendships were part of the worst times in our lives, but they are also a part of what helped all of us survive. I will never forget them. I hope the best for Rhonda and Jenny and their new babies, and I know one day I will have a healthy baby, too. I feel it in my heart as sure as I knew Shane was sick. But for right now, we'll be content will our own living, little angel.

(to be continued....)

Saturday, April 12, 2014

Shane's Story - Chapter 10

Shane slowly progressed. He still couldn't eat by mouth, he was fed by a feeding tube that was inserted down his nose into his stomach. He remained on the vent and oxygen and we all got used to having nurses in our home. Rachel and a few other nurses from the hospital joined our home nursing company to come work with Shane. Nurses came and went, a few stayed on permanently. They all became members of the family.

When Shane was 15-months-old, a new nurse, Ana*, after undergoing training, was working a night shift. At 6 am, she lightly tapped on our bedroom door and asked me to come to Shane's room. As I got halfway there, I heard Ana screaming. I ran into Shane's room and looked at my baby. He was blue, his eyes were open, but they were rolled into the back of his head. I screamed for Jeremy. He came in, saw Shane, and ran to call 911. Ana was screaming and shaking Shane. He was still on the ventilator, she hadn't even started CPR. I had to push Ana out of the way, and thankfully, everything I learned about CPR came back to me. I took Shane off of the vent, hooked up the ambu bag to his trach, yelled to Ana to turn up his oxygen, and checked Shane's pulse. His heart had stopped. I started CPR and finally Ana regained control and helped. Jeremy came into the room and told us an ambulance was on the way. He started to check the ventilator, which had been alarming since I first came into the room. Ana had emptied the humidification trap to release the collected vapor and forgotten to close it. The ventilator must have been alarming for at least ten minutes. The first thing we learned in our training was that if the ventilator alarms and you don't know why, you take the patient off of the ventilator and manually respirate them until you fix the problem. Ana had left Shane on the vent. Imagine trying to breath through a very small straw that had no oxygen. That's how Shane felt. I fired her on the spot. After 10 minutes of CPR, Shane started to come back. By the time the ambulance got there, he was fine. Of course we took him to the hospital anyway, and he was released the same day. Ana was never disciplined by the company or the state nursing board.  I may or may not have threatened to kill her with my bare hands once Shane was stable and before we left for the hospital.   We became more cautious about the nurses we let take care of Shane, in fact, we were probably neurotic about new nurses.

We switched Shane's surgical care to another hospital when we bought him home at 10 months.  We were blessed to lived near 2 children's hospitals capable of handling CDH. At a routine check-up, an x-ray showed that his sutures were giving way and that he would need another surgery. By now Shane was off oxygen, and only on the vent at night. He was interacting with us, starting to roll, and his smile lit up a room. In August of 1994, Shane underwent his 3rd major surgery. Everything went as planned and two weeks later he was home.

That October, Shane was doing great and I got to make him a Halloween costume. He and his 3 cousins were firemen and Dalmatians and his stroller was converted into a fire engine. Thanksgiving came and we got to go to Jeremy's family's house to celebrate. At Christmas, we went back to Virginia and I got to do all the things that I had wished for during the Christmas I was pregnant. Jeremy even played Santa Clause. Shane now played with his toys, rolled around in the wrapping paper, and could go from room to room without equipment and tubes. It's amazing what parents of healthy babies take for granted. The first time I could actually walk Shane around was like magic. It was like Shane and I were dancing in our own little world and he was almost "normal".

Shane turned 2-years-old in January of 1995. His cake this year was a hypo-allergenic, applesauce cake. His cherubs have been removed from his walls and replaced with more "boyish" pictures of Looney Tunes characters. Shane came off his vent that May.

Eating was big issue then.  At 2 he still wasn't eating by mouth.  His oral aversions were awful.  He wouldn't allow anything in or near his mouth at all that resembled  food.  Books, toys, matchbox cars were fine.  Anything cold, hot or wet or with specific textures made his gag awfully.  With all his many other issues and a trach, eating wasn't on the top of our list.  He had a feeding tube, then a G-Tube, then a Mic-Key button.   Feeds were ever changing based on how his stomach and diaphragm were doing.  Sometimes continuous, sometimes bolus.   We never left the house without feeding bags, feeding pump, emergency button in case his came out, prescription formula thanks to his allergies.   It was our normal.  Not eating was a really big deal because he was very underweight and he needed extra calories to make up for all the calories he was using just to breathe.

We still had home health nurses but not every day.   He was still getting visits at home from social workers, physical therapists, occupational therapists, speech therapists and sight therapists.   He got glasses.  We started working on teaching him sign language along with trying to get him to talk with the help of a pacimuer valve over his trach.   He heard his voice for the first time.   We heard his voice for the first time!  Laughing, cooing, crying.... it all sounded like the most beautiful music we'd ever heard.

On the 4th of July, he went into respiratory distress and we went to the emergency room. He had emergency surgery, his 4th repair, and went home 2 and half weeks later, off oxygen.   Just like that.  No warnings, no symptoms like before.

Then that October (1995), he needed yet another surgery, this time with symptoms so we had a small bit of warning.  He went through surgery number 5 and came home after 5 days. We made frequent trips back and forth to the hospital for viruses and for appointments to all the many specialists involved in Shane's care. We didn't know when and if Shane would need another surgery. He never did anything by the book.

Yet another Christmas came and I hoped against hope that we could possibly receive another miracle. I prayed nightly that God would heal Shane and prevent him from suffering through more surgeries. In early December, we went for a routine check-up with Shane's surgeon and an x-ray was taken. I have learned how to read these x-rays and was scared when I saw a mass. It wasn't a tumor. The doctor's said it was scar tissue, but Jeremy and I said it is the touch of God because whatever it is, it's holding his organs straight and as long as that happened, he didn't need another surgery. He gave us yet another miracle and I believed that Shane would not need future surgeries.  I was so wrong.