Scars-Part 2

Back in May I posted about Evan's scars  You can see it here-Scars.  The other night we were in the bathroom and he was studying his neck.  I explained to him that the scar is from his original trach, his airway reconstruction and then the closing of his stoma.  I told him that if there is ever a time that he wants to see a plastic surgeon about cleaning it up, he just needs to say the word and we will make an appointment.  He looked at it again and said, no Mom, I don't want to do anything to it.  It's mine and it's me.  If only I had that confidence.......

Halloween 2011

And the recovery continues......

 Day 1

 Day 6

 Day 6

 Day 9

Day 9

Well, my pity party isn't going quite as strong as it was the other day, but it's still hanging on just a bit!  I was able to get a walking boot on Thursday and see what had been done to my foot.  I'm intrigued by the incision and all the brusing but decided not to share on Facebook!  Each day is better-the pain is subsiding and I'm almost drug free. I actually drove today-not far, just up the street but it was so nice to get out of the house and have a little freedom.  I can't stand for any length of time but as long as I'm moving forward with my healing, then I need to be thankful for that! 

Pity Party

I'm having a pity party for myself today.  Actually, it started yesterday and will probably continue into the week.  Thanks to my dad, I have bunions.  Yes, they are hereditary and I am lucky enough to have them on both feet.   It's been years in the making but I needed to finally bite the bullet and have them taken care of.  Left foot was done two days ago.  Who knows when I'll have the right foot done 'cause the whole thing sucks!They had to cut tendons and put a pin in my foot at the joint. It hurts like hell. I can't put any weight on my foot at all until I go back to the doctor on the 13th.  At all.  I need help with everything.  I'm not good at asking for help. WAH!!!!

9/11

About 40 days ago, our church handed out Peaceful Remembrance of September 11, 2001-Forty Days of Prayer for Children.  It was a resource created by the United Methodist Church to help children in learning how to to use God's gift of prayer. They also asked for the children to write a prayer that would then be used in the creation of the worship service for 9/11.  They asked for the prayers to be turned in by Sept. 4th.  Mike and I were out of town for the weekend and Evan was staying with Mom, Liz and Cathy.  I had asked Mom to have Evan write a prayer.  I had no idea what he wrote. 

As we were reading the Call to Worship, I thought to myself, wow, these kids are very insightful.  Here is what we read:

It is good to have God in our lives!

God made everything and everyone for us!

We pray for everyone that died on 9/11 that they have gone to heaven and are living with you forever.

God, bless everyone who survived that terrible event.

Help all that have lost family or friends.

Help them know that you are with them.

We thank you Lord, for all the heroes who worked so hard to help the victims of that day.

Help us to be peacemakers in the world and not a people who want to make war.

We know Jesus loves us.

We want to show that love to others.

Later, my mom shared with me that Evan's prayer was included in the service in the Call to Worship. The last four lines were his prayer.  I was stunned.  Mom said all she told him was that she likes to start a prayer with giving thanks for something and then ask God for help.  Tears flowed of course!  It's times like this that, as a parent, take my breath away. 

Here was my sweet boy on 9/11/01.  He was our ray of light on that awful day.

Bye Dad, I'll see you tomorrow. Love you.

Those were the last words I said to my dad.  Labor Day, Sept.5th, 2005 at about 6:00 p.m.

My heart is full

God, I love my kid.......but he kills me with number 14.  He's been to the west coast, New England, NYC, Florida, etc. yet he says he's traveled to PA!!

The end of elementary school

I'm really not sure how this has happened. How did he go from kindergarten to fifth grade? I'm full of emotions.  Excited that my boy is growing up and becoming more independent.  Sad that my boy is growing up and becoming more independent.  I miss not being number one in his life.  I know it's a good thing but it hurts my heart nonetheless. So now we have begun the beginning of the end of the elementary years.  Sigh.........

Off the board!

After 2 years of group lessons and 3 years of private lessons, Evan is finally confident enough as a swimmer to go off the diving board! I'm sure I've already written about the fact that Evan has never done anything when people have expected to him to.  Eating, crawling, walking, potty training, riding a bike.....you name it.  So, he's done really well this summer in the pool and today he decided he was ready.  His swim teacher thought it was a good idea and so off he went! Mike got a video on his phone so hopefully I'll be able to post it because it's priceless.  The look on his face was one I'll remember forever.  

Mike's dad

Mike reminded me that today is the anniversary of his dad's death.  July 27th, 1978.  His dad was diagnosed with MS when his mom was pregnant and 10 years later he was gone. So, Mike was only 10 years old when he lost his father. Of course I immediately thought of Evan.  Yes, I look at him and think he's growing up but in all honestly he's still a little boy. No little boy or little girl should lose a parent at age 10.  It just breaks my heart to think of Evan going through that.

All Together Now

Our Life with Evan

Our Life with Evan

A fellow EA/TEF mom started a blog called Bridge of Hope, a place to support the treatment and research of esophageal atresia/tracheoesophageal fistula and the families of EA/TEF children. I originally wrote this for our NICU newsletter at work and thought I would submit it for the blog.

Scars

A couple weeks ago I posted a devotion that a fellow TEF/EA mom had written about the scars on her daughter's body. I have always told Evan that his scars are a special part of him.  Without those scars, he would not be with us today. I love the way the mom said it in the devotion.  Her daughter's scars  are reminders that God was able to help the doctors heal her. The scars are proof that she is loved. I truly believe that as well.  God was with Dr. Teich, the man who saved my baby's life the day he was born and 13 days after when he repaired his esophagus.  God was with Dr. Cotton, the man who was able to reconstruct Evan's airway when he was 18 months old so that he could breathe through his nose and mouth like everyone else. God was with Dr. Popp, the man who was able to remove his extra thumb when he was just a year old. Whether or not the physicians themselves believe in God, I know that God has given them the gift of healing.

I asked Evan if he would mind if I took photos of his scars.  He thought about for a minute and said that I could.  I just wanted to document the proof that he is loved.

My perfect boy

 The trach and reconstruction scar

 The scar down the middle was made the day he was born-part of the surgery needed to put in a feeding tube.  The little one to the right is where the tube was for 3 1/2 years

 Tiny little scars from all the IVs he's had over the years

The area where Dr. Cotton took cartilage from his ribcage to help create an airway for him

 His thoracotomy scar, right at the shoulder blade. It runs horizontal from front to back. This was made at 13 days old when they repaired his esophagus.  The puckered scar is from a chest tube

Left leg-broviac/PICC line scar

Right leg-PICC/broviac 

Right hand where his extra thumb was removed



Here's what I hate

I hate having to wait for the results of a mammogram for 2 reasons.  One, because Mom had breast cancer.  Two, because I've had to go back on two different occasions in the recent past to get additional films done.  I hate getting the letter from OSU telling me I need to make another appointment.  Scares the crap out of me.  So, today was my yearly mammogram.  Now I wait.

Oh, I also hate people that drive across a parking lot rather than go up the designated aisle like the rest of us.  I feel like I have to always to be on the lookout for the asshats that speed through the lot because they don't give a shit and don't bother to look and see if they are going to hit anyone.

A Special Gift

I got this book the year that Evan was born.  Read it over and over again those first couple years and ever since then, it has been been on my nightstand.  I thought of a couple moms at the hospital that might like this as we've had some conversations about faith and prayer.  As I took it from the nightstand, I noticed that I had turned down the corners of quite a few pages. One devotion in particular brought me to tears.  Well, most of them did, but this one stood out because it is very relevant to what I've been struggling with lately.

Scars As Reminders

Quiana is ten years old now.  She has begun asking her mother about the scars that cross her body, both on her chest and on her back. The scars are deep and long. They are not beautiful. They have been there since the day of her birth. 

Quiana had been born with a rare and not fully understood condition where the bottom of her esophagus was attached to her trachea, a "mix-up" in the tubing.  As a result food would go to Quiana's lungs.  This condition (known as TEF/EA) occurs in only 1 in 5,000 births.  In an attempt to save her life, Quiana had her first surgery within twelve hours of birth. She has had four more surgeries since then.  There is a possibility that she will have more during her lifetime.

The scars were incurred during surgeries that saved her life.  Some are the result of the feeding tubes and drainage tubes she had to have for a time.  Quiana's mother tells her daughter that the scars do not make her different from other children, but they are reminders that God was able to help the doctors heal her.  The scars are proof that she is loved.

Jesus bears scars too.  His scars are the result of His death on the cross for us.  The scars mark His feet and His side and His hands.  They were put there by the nails that held Him to the cross.  They were placed by the spear that pierced His side.  They are constant reminders of His great love for us.

There is a significant difference between the scars on Quiana and those on the hands and feet of our Lord: Quiana's scars are the result of doctors saving her life; Jesus' scars are the result of Him saving ours.

Picture the palm of His hands.  Those wounds into which Thomas was invited to place his hands are still there.  Look closely and see the that the scars are not in the shape of the nails.  They are in the form of letters.  They are the letters of your name.  They are the letters of your child's name.  The Lord has inscribed your names permanently on His hands.  He has carved them deeply into His heart, and He will never, ever forget you.

Prayer:  Lord, You have inscribed me into the palm of Your hand.  You hold my child and me in those capable and scarred hands.  Help me to rest in that security today.  Help me to see the scars on my child and on my heart as reminders of Your deep concern and love.

Copyright 2000 Carrie T. Gruman-Trinkner

Evan has 8 more days of 4th grade.  Then he will be in 5th. Then we will be gone from the safety of Colerain Elementary and into the scary world of middle school. Right now Evan is surrounded by friends and classmates who love him and accept him just the way he is, scars and all. I'm just not so sure that the kids in middle school will be so accepting and it scares me to death. Evan is so confident right now and my fear is that he'll lose that if there is any bullying.  That would probably kill me.  I have to remember that He holds Evan in those capable and scarred hands.

Our little getaway

Evan's spring break was the week before Easter and we decided to just go away for a couple nights. Not too far, not too expensive. Evan read a book about Mammoth Cave recently so we decided to go there.  When looking for hotels, I came across Wigwam Village #2 in Cave City KY.  Built in 1937, it is only one of three Wigwam Villages left in the country.  So, how could I pass that up?  Well, let's just say that when we first got there, I was ready to turn around and go back to the interstate and get a room at the Comfort Inn!  Let's just say they haven't done much to the wigwams since 1937!  I didn't want to disappoint Evan because he was super excited (I didn't tell him where we were staying until we drove up).  So, I sucked it up and made the wigwam our home for the next two nights! It was clean-that much I can say! Anyhow, we had a great time.  We realized it had been awhile since just the 3 of us had gone anywhere.  Yes, we travel alot but recently it has been with other people or just 2 of the 3 of us.  Mammoth Cave is fascinating.  We took a two hour tour into the cave.  All I could think about was, what if there was an earthquake when we were down there? Yes, that's where my mind went.  We only explored 2 miles of the cave and it's like 397 miles long which is incredible. We had to duck down in places and walk sideways thru Fat Man's Misery because the passage was so narrow. Very, very interesting.  What I loved about Cave City KY is all the cheesy touristy things and gift shops! I will write more at a later date as Evan is in the midst of a sleep crisis.........

My dad's work

Dad's published articles

My cousin Sue sent me this link the other day.  I thought it was something I should hold on to for Evan to see one day. 

Email from Dad

I was going through my old hotmail account, knowing that I had some emails that I wanted to retrieve before closing it out for good.  I came across this one written by my dad on Aug. 8th, 2002. And yes, it made me cry.


Dear Friends, I'm happy to report Evan's surgery went very well on Monday. The team was able to: 1.Enlarge his airway 2.Free vocal cords from wall of airway by removing cartilage from behind same 3.Remove cartilage from rib, shape it to fit in his airway both front andback and suture them in place and 4. Place a stent in affected area to keep airway open during healing process. In a month, they will check the throat and if all is well, remove the stent,cap the Trach tube and let him breathe for a time, then he will have to stay in the hospital for 24hrs when they remove the tube.(Decannulate is the term all the Moms know). We had thought all this would require 1-2 operations, but were able to do it at one time. The docs did tell them that they would know better once they started surgery what could be done. A small drain was placed in the throat area and the rib. Yesterday the rib drain was removed and this AM, the throat drain. He was able to start eating (drinking actually) from his bottle and pain is being managed with just Tylenol. Yesterday when we visited him, he had a smile for us and knew he'd turned the corner.The surgery required was approximately 5 1/2 hrs and he was in ICU ,until last night, not because he had to be there, but because, there were no beds available in the step down unit. We felt good about his being in the ICU though, more for Mom and Dad and us. We came home yesterday afternoon,talked with Mike this AM and they may be coming home tomorrow, if all continues as it has the last 24 hr. Evan's nurse drove 140 miles one way to visit him yesterday .She is one of the ladies in his life-Mom, Grandma and Patty.She's been wonderful with him and for him. She comes to the house 20 hrs a week so Annie can sleep, shop or just take a break. As I think I told you, Dr. Robin Cotton perfected this procedure. The respiratory therapist was in to check his gases etc. and he said he was on Dr Cotton's transport team and flew all over the world to bring children to Cincinnati for treatment. Evan weighs a little over 20 lbs and all this was done through the side of his throat and after the drain was removed today, the incision was covered with a BAND AID, as was his rib incision.It must be all microscopic assisted surgery in that area.As a side, yesterday he coughed and phlegm came out his mouth. This may seem mundane, but it is the first ever and when he saw the doctor coming to see him this morning, he started to cry and a little sound came from him! "A thousand mile journey starts with the first step".  Rosemary and I have been, and are grateful for your prayers/concerns and thoughts for him , his Mom and Dad and us.She saw her oncologist last Friday and all systems are go! A lifelong friend of Rosemary-Barb Seeger- will be undergoing surgery for breast cancer on August 15th so we ask you to join us in healing prayers/thoughts for her and her family during this time. Well, I didn't mean to write an essay or short story, but did want to fillin the "Friends of Rosemary" group. Take care, Jim and Rosemary

There's no place like home

10 years ago we brought our baby home, 49 days after he was born.  We were scared and he was unhappy to be out of the NICU, the only home he had known. I cried, he cried. I was not ready to have him home.  It's funny because from day 1, all I wondered was when he'd be able to come home and now that he was, I wasn't sure I could handle it.  Did that make me a terrible mother? I thought for sure it did. Things were too hard.  Keeping track of all his meds, following the "recipe" for his formula-we had to get the caloric content just right-making sure he was being fed 18 hrs a day courtesy of the feeding pump, suctioning the trach, cleaning his trach site twice a day, cleaning his g-tube site once a day, giving him breathing treatments, making sure we have the apnea monitor on, making sure the air compressor is working so that he's getting cool mist into his trach.  I didn't want to be a nurse.  I just wanted to be his mommy.  

But here we are 10 years later.  I am the proud mommy of a smart, funny, healthy, sweet, loving, boy who, in celebration of his homecoming, ate spicy wings!  He's come a long way since being hooked up to that feeding pump for his first dinner at home!

The trach

Ten years ago today, Mike and I sat in surgery waiting area praying for a miracle.  Evan's ENT was hoping to repair Evan's airway without putting in a trach.  He had been on and off the vent for 6 weeks, unable to maintain a stable airway without it.  We knew that a trach was a possibility but we had prayed that the procedure she told us about would work.  When the ENT came out of the OR about 10 minutes after she went in, we knew the news wasn't good.  She would have to do a tracheotomy. I think I experienced every emotion that I possibly could that day.  I couldn't imagine anything worse happening to me and my baby.

Now, 10 years later, I can't imagine what life would of been like if Evan didn't get the trach.  Yes, it was a long, difficult and scary 2 1/2 years before it came out, but along the way I met so many extraordinary people. The nurses that were sent to my home to care for my son, women who were also caring for a child with a trach (some of which would become lifelong friends), exceptional physicians and therapists who truly cared about my child. As a result of our journey, I've been able to help other moms who are facing the same thing we faced 10 years ago and perhaps calm their fears about taking home a baby with a trach.  Evan's story inspires and encourages them. 

Three long weeks

So, I had my septoplasty on January 21st.  I was very pretty afterwards, wasn't I? The first couple days were bad.  I couldn't breathe thru my nose nor could I lie down.  Mike took me to the doctor's on Monday (surgery was Friday) to get the splints removed.  He told me all along I'd feel much better once they were out.  In my head, I thought the splints were little tiny plastic tubes.  When he pulled them out of my nose (one on either side) I almost died.  I had no idea they were so big.  No wonder I was miserable!  Unfortunately, a few days before my surgery, my herniated disks in my neck flared up and I was and have been in terrible pain.  Usually, I only have neck pain and stiffness for a few days or so.  The pain this time has radiated down into my shoulder and arm.  I was in tears the first week so the recovery from my surgery was made worse by my neck.  I wanted to curl up and die! I'm on my 2nd round of steroids and start physical therapy tomorrow, so I'm hoping that the traction that has helped in the past will help this time and that I don't have to go the next step and that is get injections into my neck by an anesthesiologist. These past three weeks have given me a new appreciation for people that are in chronic pain.  It really takes its toll on you. 

Happy 10th Birthday Evan!

Ten years ago my life changed forever. Today is Evan's 10th birthday. This kid has taught me more about courage, resilience, empathy and self-acceptance in the past 10 years than I managed to learn in my first 37 years.

As usual, we just didn't celebrate his birthday today-it started on Saturday.  We took 5 of his friends to a place called Sky Zone-a warehouse that is basically one big trampoline!  The boys had a great time.  Sunday was our family party complete with sloppy joes and  a DQ ice cream cake.  Today we started off with cinnamon rolls and ended with wings from BWW.  Yes, I ate my way through his birthday weekend! It's just so hard for me to believe that he is 10.  Double digits.  How did that happen?

Man vs Food (again)

The Thurman Burger!!

We had a great time today at the Thurman Cafe in German Village. Ever since Evan saw the Columbus episode of Man vs. Food, he's wanted to to go there. So, today was the day. He decided on the Thurman burger which was the same thing Adam Richman ate when he there. This is a 12 oz burger with ham, 2 kinds of cheese, sauteed onions, mushrooms, banana peppers, lettuce, tomato. As you can see, this thing is huge! Evan had so much fun eating it-he got halfway thru which is more than I ever imagined he would eat. Oh and then we went to Schmidts Sausage Haus to get a cream puff to go.  Adam went there too.  So, now we've been to two of the three places on Man vs Food.  One more to go!

The countdown has begun.....

10 years ago I was on "bedrest" at home. It was a horrible, boring yet stressful time. I had been off work since Dec. 27th and while I wasn't totally confined to my bed, I couldn't do much. I had to check my blood pressure 2-3 times a day (stressful) and then lie on my left side for a certain amount of time each day and count how many times the baby moved. THAT was stressful.  I just prayed that I would feel movement each day. Mike picked me up at home on January 4th 2001 and off we went to the high risk OB.  I think this was my first visit with the guy-my regular OB recommended I see him after my blood pressure spiked. He took this ultrasound and the moment I saw the profile, I knew we were having boy.  Evan Michael. Now, I guess I was naive and thought that if anything, I'd just hang out at home until March when he was suppose to be born.  Little did I know that two weeks after this ultrasound was taken, I would be at OSU recovering from a c-section and Evan would be fighting for his life at Children's.

Just one more......

Michael Jackson: The Experience

Christmas 2010

 Mom after opening Evan's gift

Christmas 2010 has come and gone. Hard to believe that we're into 2011 already!  We had a very nice Christmas although it was different because my brother and sister-in-law were not with us. Unfortunately, Kate's dad passed away on Dec. 29th and they had gone down to Hilton Head on the 22nd to be with him in his final days. Jack and Sam stayed in Columbus so we had fun with them.  I couldn't imagine Christmas without my nephews!  I think the highlight of the day was playing Michael Jackson: The Experience on the Wii.  OMG.  Talk about fun. I've laughed so many times since then watching the videos.  Good times!  Oh and Mom surprised us with new masks.  Need I say more?