Tuesday, May 29, 2012

Cincinnati Progress Update.... Lot's of Prayers

I am asking for prayers... Tomorrow early morning, Wednesday May 30th,  Emmett's case will be presented to the Aerodigestive Program at Cincinnati Children's Hospital. I have spent a couple of hours on the phone this past week speaking with one of the nurses who is collecting Emmett's medical records to prepare them to be  presented. 

I am praying for guidance and direction from the attending physician's in the meeting. The meeting will hold multidisciplinary physicians, Pulmonology, GI, ENT, Pediatric Surgery, Anesthesiology, Dietitian, and Speech Pathology. 

The team of Physician's will evaluate Emmett's medical history and come up with a plan of action. A nurse will then call us report to Michael and I what the plan will be. If we are interested, then scheduling our trip out to Ohio will be the next step.

I know if I ask the Lord, he will help guide the physicians, he has so many time's before in Emmett's behalf. He has guided those here in Phoenix. I have a good feeling about this next voyage and I hope, for Emmett's sake, that we can find solutions that will enable Emmett to live a long and beautiful life!

Cincinnati has a Esophageal Center. This group will also be in attendance at the meeting and as far as I understand have been notified about Emmett. There is HOPE!

I am so grateful for all those who have worked so hard for the care of my Emmett bug! We are so greatly blessed.

Thank you for all of your faithful prayers!

Go Emmett, Go!

Thursday, May 24, 2012

Meet Hope, Read her Amazing Voyage for Emmett and Raising Awareness!

Meet Hope, an incredible and inspirational 11 year old girl from St Louis 
Missouri. Half way across the country, this young girl watched the inspiring video on you tube created by the Battery Controlled in an effort to help spread the awareness of the danger's of Button Battery Ingestion. 

In the video, a story is told about a young boy and his fight to survive after swallowing a button battery. This little boy is Emmett. She was so touched that she with the help of her mother, went on to the Emmett's Fight website to learn more about our little Emmett. Hope's mother, Stacey, contacted us and explained that Emmett's story had touched her daughter and their family. Hope wanted to do something to help the Battery Controlled and Emmett's Fight spread awareness.  Read about Hope's inspiring odyssey.   

I spoke with Hope's mother Stacey and asked her what inspired Hope to take on such a courageous and moving project. Stacey said,  "She (Hope) saw the YouTube video and it touched her heart and launched her into action.  She chose to make her classroom (at her elementary school)  aware of button battery dangers and it turned into their class service project for the year.

They (Hope's class) prepared a presentation that they presented to the entire faculty in order to gain awareness of the issue and then gain permission to visit each classroom (kindergarten -5 grade) to make a similar presentation.  They did this in December.

·         When they visited the classrooms they were focused on raising awareness of button battery ingestion to:
·         1st raise awareness of the issue 
·         2nd raise awareness for the fundraiser for Emmett’s Fight

·         Each morning for about 3 months, a few kids from the classroom set up a stand in the school entrance and sold the orange emmettsfight.com bracelets.

They used many of the components of The Battery Controlled (website) to help in their presentations.
They also used videos to help tell the story. 
Mrs. Bushway told me that their presentation was very touching and almost brought her to tears."

Hope is in the green T-shirt standing in the back next to her Teacher Mrs Bushway.

Hope and her school raised $379.97 for our Emmett's Fight Campaign! Michael and I are speechless. We are so grateful for Hope and her amazing voyage to spread awareness to member's in her community. We feel it is so important that siblings of younger children know about button battery dangers. The youth in the community can be  helpful in preventing an item containing a button battery from getting into the hands of small children. Hope you are moving mountains and helping to save lives.

Thank you Hope, Thank you Mrs Bushway's 5th Grade Class, Thank you Prairie View Elementary School!

Go Hope!
 Go Emmett!

In the interest of full disclosure, Hope’s mother is an Energizer employee and a spokesperson for The Battery Controlled. While I do not have a paid relationship with Energizer or The Battery Controlled, I consider Emmett’s Fight to be a partner we share the same mission – to help educate parents and caregivers about the severity of this issue and to prevent other children from swallowing coin-sized button batteries.

Friday, May 18, 2012

A few words

As much as I try to look for the light in the dark tunnel our family has been in this past year and a half, there are just some days that my heart feels heavy. In our home the reality is each day life is still a fight to survive, a fight to be comfortable, a fight for Emmett!

Michael and I have opened our family to the community by sharing Emmett's story in an effort to spread awareness of a hidden danger that placed our family in a world of pain, anguish, sadness and uncertainty. I am not looking for sympathy. Only that writing is therapeutic for me and I hope one day to look back at the post's as only a journal entry and distant memory.

Each day Emmett deals with many complications. I try and post the many joy's that come to remember to count them as blessings. When I have days as a mother, where I struggle with my emotions, I can look back at the photo's and post's and realize I am so richly blessed.

Emmett struggles with retching ( fierce dry heaving). Retching was not an issue before the accident of swallowing the button battery a year and a half ago. It is one of the many side effects. Many parent's with special needs kids can understand the pain, struggle and heart ache it is to watch your child retch. On a good day Emmett will retch up to 3-4 times and hour. On a difficult day, which is more frequent than not, he can retch up to 10 times per hour. Retching puts Emmett into distress, causing his oxygen levels to drop, strains his fragile esophagus, sweat profusely, causes his mouth to pool saliva which then spills over into the trach (airway) and into the lungs which then results in a low grade fever. He also then becomes lethargic.

The Physician's here are fully aware of Emmett's issue and they are doing the best of their knowledge to help out Emmett.

A month ago I wrote about a personal decisions I made to try and never ask WHY. Sometime's it is difficult in Emmett's behalf. My heart ache's each day as I have to watch my son suffer. I do have faith, I know Emmett's and my families suffering is not in vain.

I have met some pretty amazing woman through this experience. Forgive me Cindy I didn't warn you I was writing this. Cindy is a pretty amazing woman who know's heart ache on a daily basis. She inspires me to keep moving forward as she and her husband do with courage and faith. Cindy's family story . Thank you for your example!

I love music and one of the ways I try and find peace is by listening to beautiful and inspirational songs.  I came across this on youtube the song is about a courageous woman named Emma. I found myself saying... Okay Emma did it, so can I. This woman knew heart ache and pain. She lost a few of her children to illness then later she lost her husband at an early age. I find strength from woman who have fought and shown such bravery. Thank you for all those who are an inspiration to me.

Thank you everyone for their faith and prayers. Time to keep fighting!

Go Emmett, Go!

Wednesday, May 9, 2012

Cincinnati Update

I want to update the progress that has been done so far towards making our way out to Cincinnati, Ohio. We will be traveling to get a second opinion at the Cincinnati Children's Areodigestive Program.

Step 1: Referral from Doctor  -Check

Step 2: Medical Records sent from PCH to Cincinnati Children's - Check

Step 3: Check with Commercial Airline - Check, the commercial airline is not able to take Emmett.

Step 4: Look up Medical Flight and coverage from insurance. - In progress

Step 5: Cincinnati RN reviews Emmett's medical record

Step 6: Areodigestive group (A Pulmonologist, Gastroenternologist, Pediatric Surgeon, Ear Nose and Throat, Speach therapist and Nutritionist meet to discuss Emmett's case

Stet 7: Once approved an individual from Cincinnati Children's will call to schedule Emmett into the program. We should only be in Cincinnati for about 5 days.

Step 8: Book airline, hotel and car rental.

Cincinnati Children's

Monday, May 7, 2012

South Jersey Mom Magazine Featuring Emmett's Survival Story

Open publication - Free publishing - More mom magazine

*Thank you Crystal Thomasson for connecting us up with the right people.
* Thank you Marily Evan's for being a wonderful friend and sharing your talent.

Wednesday, May 2, 2012

"Tell Your Story" Beau's Fight

Emmett's Fight is starting a new addition to our blog post's. Once a month we will share a story about another child who swallowed a button battery and his or her fight to survive. I hope by sharing another child's survival story will help our effort's by spreading awarenesst. Emmett is not the only child who has suffered from swallowing a button battery. According to the National Poison Control, 3,500 children each year swallow button batteries. We believe that there are many cases left unrecorded. Read Beau's story and please continue to help us spread the word!

Meet Beau! He is the sweet big brother in the photo.
I want to thank Ashley, Beau's mother for sharing her thoughts and experience with us. I know personally, sharing a tragic experience is like opening up a wound. I appreciate her courage and desire to educate parent's about the danger's of button batteries. Thank you Ashley!

Beau's Story:
By Ashley Peterson

    I’ll never forget the morning that changed my outlook on life forever.  I was sitting on the floor of my living room, nursing my youngest 2 month old son, when my 3 ½ year old son, Beau came tearing out of his room shrieking in panic and pain.  He cried to me, ‘Bubba, owie, owie.’.  I pulled him into my lap and kissed his forehead and asked what happened, and normally, this is all that it took to fix any ‘owie’ he got.  Whether it was after surgery, a fall, a stomach bug, everything was always fixed for him if I put my arms around him and just cuddled him.  This was very different.  He would not relax in my arms, he was stiff, jerky, could not get comfortable.  He kept screaming and crying and I began to become alarmed.  He could not calm down enough to tell me what exactly had happened, could only make out that he had fallen off his bed and pointed at his chest and stomach as the sources of pain.  My husband walked in the door from work shortly after and I had decided to take Beau to the local ER to make sure he hadn’t suffered a concussion or something else.  Right before we walked out the door, Beau vomited everywhere.  At the ER they scanned his stomach and abdomen, checking to make sure no organs had ruptured in the fall.  While we were there, he continued to vomit.  Although he had no fever, we were discharged within an hour with a few Zofran to help with his vomiting and the comments that he may have just fallen on something or it could be the flu.
                Once home, Beau continued to cry in pain, could not get comfortable and could not keep anything down, and continued to vomit.  I’d been noticing since the hospital there were dark flecks in his vomit (that was pretty much the only thing in them) and had noted how odd it was b/c he hadn’t eaten anything besides a waffle that morning and that was long since upchucked, so I couldn’t figure out what was still in his stomach.  Now looking back I know that it was the corroded tissue and lining of his esophagus.   After 4 hours of no improvement and continued vomiting, despite doses of Zofran, and him still screaming in pain and telling me, “I’m not okay.  I need to go to the dr.  I’m not okay.” I knew something was not right, and it was not something viral.  Beau was a strong kid, he had a ridiculous pain tolerance.  He’d had 3 surgeries by the time he was 2 ½ yrs old, and he’d never even had doses of Tylenol afterwards.  Each time, by the time the anesthesia wore off, he was back to his old self.  I knew that if he was still this immobilized by pain hours later, something was very wrong.  So we  went back to the ER.  This time they gave him a CT scan, which was horrifying, and stated it was probably a coincidence and a virus, and to just make sure he didn’t get dehydrated.  We were discharged and back at home, Beau fell into a fretful sleep for 2 hours.  When he woke up he was completely frantic and crying and vomiting.  He still hadn’t been able to keep anything down and it was about 10 hours since the ordeal began.  I went  into his room at that point determined to find out if there was ANYTHING in there he could have injested that maybe was obstructing his digestive tract or poisoning him.  The only thing I found was a booklight that he kept in his room to read himself to sleep.  The back was off and there were 2 empty spots for 3v lithium button batteries.  I only found 1.  I held up the battery I found and saw little impressions that looked like teeth marks.  I started to panic as I held it up to him and asked if he knew where the other ones were.  His eyes got wide and he instantly lost control and began blubbering incoherently and would not calm down until I put the battery out of his sight.  I instantly knew whatever was wrong had to do with this battery, but I thought the worst thing that was possible was that it was lodged in his gi tract somewhere and would need to be removed.  I had no idea that it was currently electrically searing a hole through his esophagus and getting closer and closer to killing him as I stood there and tore my house apart at 11:30 pm on a Thursday night trying to find the missing battery.  I woke up my husband hysterical and sobbing, begging him to find the battery so that I could relax and believe this was truly just a stomach virus.  As he searched I made the mistake of getting on google.  What I found horrified me.  Countless stories and CAPS LOCKED WARNINGS about the lethal effects of ingested batteries on children, in a fraction of the hours that one had probably been in my own son’s system, had me at a complete loss and I wished I could just put my hand down his throat magically and pluck it out.  I couldn’t believe that there was something like that in my son and I could do NOTHING but watch him suffer and pray that I wasn’t too late. 

             We tore back to the ER.  We raced in and told them we now were almost positive what was wrong was that he’d swallowed a battery.  The nurse obviously had no idea how serious this was as she stuck us in a room, told us that he’d already had a lot of radiation today, and we should probably just go home because it was most likely just a virus.  Finally an x-ray was taken and I’ll never forget looking up with Beau in my arms and my heart sinking as I saw the prominent outline of what I knew was in there.  We were on the AZ/Mexico border.   1 ½ hours south of Tucson, the closest children’s hospital.   I felt we would be medevac’d up there, they would surely know that every minute counted.  Instead, we waited 45 minutes for an ambulance to get there, so that we could drive the speed limit through the canyons.  I was sobbing and praying on my knees next to my son who was now completely passed out from the pain and exhaustion.  My husband was weaving behind us with our 2 month old son in the back seat.  At this point I was well aware my son was in the fight of his life and we would be lucky to walk away from this at all, I couldn’t even get my hopes up that we would walk away with our lives unchanged.  When we walked in the doors of TMC, the nurses had already pushed my son to the beginning of the surgery list, assured me that would make sure he was fine, and had us settled into a large, private room.  Beau was in surgery within an hour and before they took him back, the surgeon asked us if we had any questions and I just remember staring at him and begging him to hurry so that Beau wouldn't be hurting anymore.  I vaguely remember them warning us about possibilities of perforations, the fact they wouldn't be able to do much more than pull the battery out, hopefully, with a scope b/c generally in situtations like this the lining is so damaged, they could do more harm than good.  I remember going to the bathroom in the waiting room and vomiting and praying.  I remember calling my mom sobbing, asking her how she got through it when my brother had had a massive stroke when he was 14 and she didn’t know if he would be okay.  

           In a short amount of time our surgeon was back in front of us showing us a blackened, charred circular object that barely resembled a battery.  It had been in Beau for 20 hours and was unrecognizable.   He was telling us that a lot was still hanging on what they discovered at the swallow test.  The little bit of his esophagus he saw was badly burned, but that he had seen worse, and we would take treatment options one day at a time.  He shook his head and said he does not understand why battery companies don’t put some sort of coating on them to make them taste bad to discourage them from putting them in their mouths, or at least keeping them there.  Beau woke up screaming for water.  I had to tell him no.  I cried as I told him because I could only imagine what it must feel like to have your throat with 2nd or 3rd degree burns and be told you can not soothe it with water.  The nurses called down to where they do the swallow studies.  When there was no answer, they physically walked down there to ensure Beau would be seen immediately so we could know the results as soon as possible.  My heart was in my throat, as I soothed Beau and begged him to swallow the liquid so we could see if there were holes in his esophagus.  I had prepared myself that there would be some because how could we be so lucky as to walk away from this without one.   Miraculously, there were none.  However,  the erosion was severe and we were told he would only be allowed to have clear liquids until further notice. 
        I was nursing his younger brother, and I’d actually only weaned Beau a few months earlier, and from all of his surgeries, I knew breast milk was deemed a clear liquid, so I asked if I was allowed to give him that.  I was sure that he would get more nutrition from that than water, and I also had hopes that maybe it would coat his throat and help it heal faster as well as keep out infection.  His doctors loved the idea and encouraged me to do just that.  Beau begged for food, but was satisfied with just ice and breast milk.  He was given an antacid while we were in the hospital, but that was the only medication.  We were in the hospital a total of 4 days, while they kept him under observation.   By the time we were released, Beau was allowed to eat any foods that were the consistency of baby food.  Unfortunately, Beau has sensory issues and an extreme gag reflex to any foods with this consistency, so he mainly stuck to breast milk and mashed French fries and beans.  We were told to stick to that diet for a few weeks until a follow up.  When we were released I remember asking what I should watch out for.  They said often after an injury like this, scar tissue will build up and close off the esophagus so that his surgeon wouldn’t even be able to fit the tip of a pen into the hole.  If this happens he would need a surgical procedure to stretch the tissue back out.  All I could do was watch for signs that Beau was choking. 
         The next few months were hard.  I was so paranoid about a stricture forming, or when Beau would get a cold and a cough, that the cough would put too much pressure on his damaged throat and it would cause it to blow.  There is nothing like knowing your child is dying to make you realize just how devastating and unimaginable the possibility of losing them really is.  Every time I walked into his room for weeks afterwards, I wasn’t able to breathe.  I would start to panic and would have to close my eyes and remind myself that he was healing now.  For Beau, it wasn’t any easier.  He was unfortunate to be past that magical age of 3, where they suddenly start remembering things long term.  His nightmares were horrible.  His screams of sheer terror woke us up every night for months.  He would come tearing out of his room, sliding as he made the turn into the hallway trying to outrun whatever monster was suddenly chasing him.  He suddenly seemed to have realized he wasn’t invincible, and fear was an emotion that was new to him.  Slowly they began to subside, and randomly Beau began to talk about the whole experience.   It’s been almost 10 months, and I won’t allow anything that has those batteries in them into my house.  It seems everything they are in have the flimsiest battery covers known to man.  I can still not wrap my hear around the fact that something so lethal is so accessible and I had no idea I was placing it into my child’s hands by giving him a book light.  Beau is back to eating a normal diet, although his gag reflex is even more sensitive now.  Our family will never be the same, and although it taught me a new appreciation for my life and the health of my children, it was an unnecessary injury to my child that could have been avoided if I’d known it was possible.   Every time I look at Beau I know that we are unbelievably blessed that our biggest scars were some months of nightmares and a few weeks of a restricted diet.  I believe that because he was older and his esophagus was bigger, and he was able to tell us just how wrong something was with him, he was able to survive and fare better than those kids who are younger with the same injury.  Now that my youngest is turning 1, I keep picturing what it would be like if it was him.  There are so many things that happen to our kids that are out of our hands, sickness, disease, etc, that to have a danger out there that is preventable if parents are only made aware of its existence, seems like a crime to me.  With the use of button batteries on the rise, so is the danger they put our kids in.