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.
      
           


Monday, April 30, 2012

An aggressive move for Emmett's care

Emmett went into Phoenix Children's for a routine out patient surgery , an esophagus dilation, today. Emmett's esophagus has been repaired in different area's multiple times. It is incredible what Dr Egan and his partner's have been able to do in saving Emmett's life and trying to preserve the original esophagus. We are hoping that it will continue to work, however we have had the discussion of possible complete Reconstruction. The plan for now, it to give his body time to heal.

The location's where the esophagus was repaired, scar tissue has built up, forming strictures. Dr Egan and also Dr McComber have been carefully working on stretching the strictures every 3 weeks for over a year now. The dilation procedure is not like most, Emmett's esophagus tissue is still very weak and fragile. To dilate, process must be done carefully, to prevent tears .
The dilation's however, is not proving to show much improvement as we hoped. Dr Egan and Dr McComber are constantly doing research on how to improve the issue.


This is an image of the esophagus and stomach. However Emmett's stomach does not look like this. It has been surgically altered to repair the esophagus and prevent reflex. Emmett has multiple complicated area's in his esophagus. The red dot is the most concerning area.


These are images of Emmett's esophagus. Notice the picture on the lower right, the opening is nearly closed off. That is the what Emmett's esophagus looked like this morning before the dilation. The image on the bottom left is what it looks like after the dilation. In 3 weeks, the esophagus will be once again be a narrow opening.


The narrowing of the esophagus does not allow Emmett to be able to swallow his saliva. The result is that the saliva leaks over into the airway, trachea. The complicated airway that Emmett has, does not allow this body to protect his lungs from saliva that spills over. The result is aspiration which leads to pneumonia, continuing to damage this lungs.

We still have a long road ahead.Thankfully, Emmett has a strong group of Physicians who are looking out for his best interest. Dr Roa, a phenomenal Pulmonologist, Dr Egan and Dr McComber, suggested today, that it is time for us to get a second opinion. I am grateful to them for suggesting this. The idea is to have a second set of eye's to view Emmett's case and suggest their medical opinion.
The verdict to were we are going.... Cincinnati Children's Hospital, which is rated one of the top children's hospital's in the country.

I will be busy making phone call's checking insurance coverage, airline arrangement's, hotel's and doctor's appointments. 
First on my list, call the airline and see if they will be comfortable with a trach ventilated child on oxygen riding on the plain. We hope to have a nurse come along with us. If the airline doesn't feel comfortable with Emmett's condition on the plain, then I will look for a medical plain to fly us out to Ohio. 

Big steps ahead. We pray everyday for guidance from the Lord to know how to help Emmett improve and to heal. I feel like in a way I have been prepared for this. It is an aggressive move, but both Michael and I feel at peace and know it is what needs to be done!

Go Emmett, Go!

Thursday, April 26, 2012

Meet Sydney and the 5K

                                                         
Meet Sydney, a dear friend of our family. She suffer's from a autoimmune disease called Crohn's disease. Crohn's is an inflammatory bowel disease that affects the GI track. Crohn's is extremely painful, can require multiple operations and is a life long disease. The Rauch family is attending the "Take Steps, be Heard for Crohn's and Colitis" 5K walk this Saturday April, 28th to show our support for Sydney and a few other's friends who suffer with this disease. The walk begin's at 5pm at the Phoenix Zoo. Phoenix reader's, if you are looking for a great event to attend this weekend, venture on over to the Zoo and support a great cause! The weather is suppose to be beautiful this weekend!



Take Steps, Be Heard for Crohn's and Colitis


The Phoenix Zoo

Wednesday, April 18, 2012

Why?

One of the universal question's of this life is "why is this happening? or why me?" I think it is only human for us to feel this way and we must go through the emotions when we find ourselves faced with a difficult trial or situation. A tragic accident, illness, a loss, separation, addition, disappointment, heartache and physical pain. No one person is free from sorrow at one point or another in there life. Many time's it can last for years on end. It is part of our existence and why we are here. So what are we going to do about it? A choice.... Strap on our boots and trudge right through it or turn away and let it destroy us.

I have found myself faced with this fork in the road several times through out my life. A wise man once told me (aka my father) "try to look for the blessings that the Lord give's you in your trials and you will be able to find a tiny ray of sunshine to help you pull through." I have clung to his advice time and time again. Don't get me wrong I have had many a days were I wished I had a padded room where I could bang my head in and scream as loud as I could, probably more day's than I would have liked. A wise woman once told me (aka my mother) " So scream! Let it out, you have good reason too. Cry there is nothing wrong with tears. Just when you are through get down on your knee's and plead for the Lords strength to be help you."

So pleading I did. I had to be strong for Ethan, I had to be strong for Emmett. Emmett was the one who has physically suffering and Ethan emotionally. Michael was a rock for all of us. We had our moments as a couple, but who doesn't. We had to come together to be a force for our boys and each other.

As I am learning the human body is like a intricate clock, each piece depending upon the other to work correctly. If one part struggles the other parts start to be effected. This I am learning with Emmett's tiny little body. We have lot's of thing's to focus on for Emmett's future. But we are taking it day by day. I am so happy we are out of survival mode for the most part and working on rehabilitation. It is terrifying to me to see the amount of damage one little button battery had made that has caused a life long impact on my sweet little boy! But he is here! That is all that matter's. God is good and I am so grateful!

Go Emmett, Go!

Thursday, April 12, 2012

Fundraising Breakfast!

Meet Devin,  a terrific 14 year old boy. He is a Boy Scout and working on his Eagle Project in effort to become an Eagle Scout. An Eagle Scout is the highest rank attainable in the Boy Scout program.

For Devin's Eagle Project he will be hosting a fundraising breakfast  this Saturday, April 14th from 7am to 11am. The location will be at Alta Vista Park 107th Ave and Williams Road in Peoria, AZ . All proceeds raised will benefit Phoenix Children's Hospital. 


Devin has prayed daily for Emmett over the past year. He desires to continue to show his support by  focusing his Eagle Project on raising money for Emmett's home away from home, Phoenix Children's. Thank you Devin, this means the world to our family.
Please come Saturday and enjoy a delicious breakfast to support a wonderful cause!


Emmett and Devin

Phoenix Children's Hospital

Alta Vista Park

N 107th Ave & W Williams Rd, Peoria, AZ 85383

Monday, April 9, 2012

Reunite!

   On Saturday our family was able to reunite with some dear friends, the Bengstons. What a terrific family! We met 2 1/2 years ago in the Scottsdale Shea Neonatal Intensive Care Unit.   Emmett was born 12 weeks premature. Shanna and Eric also had a premature baby, her name is Frankie.    Frankie and Emmett were room mates for the first month of their lives. Michael and I instantly bonded with Shanna and Eric. Miss Frankie is a miracle! She has made HUGE strides in her little life. She is my inspiration! She has Wowed Phyiscian's again and again. She still has no diagnosis but is doing beautifully today. Within the first month of Frankie's little life, she required a trachostomy (trach) to be able to breath. She is also fed through a G-tube just like Emmett. Frankie's parent's were told that Frankie would never walk. I stand here to tell you this day, that Frankie is Trach-less, yes breathing on her own and she is walking on her own! What a miracle!!! God is good. I thought about dear little Frankie many a times during our struggles with Emmett.  What an amazing girl with an amazing parent's. We are so blessed to have such dear friends.        


Miss Frankie with Ethan and Emmett is showing you his good side I guess...  






                   


Miss Marley, Frankie's big sister, Ethan helping Emmett with his trach, Frankie and I and her dad Eric having fun on the trampoline.




Emmett with his pal Lloyd. 

Thank you Bengston family for such a great time! We love you!

Tuesday, April 3, 2012

I am so very grateful for my family! I get so much joy being with all 3 of my wonderful, darling boys. How does a girl get so lucky! 
We are spending as much time out side as we can right now, trying to soak up what is left of the cool Arizona spring air. Yes, it is only April but the summer comes fast here in Phoenix and by mid May it will be hot! 

I LOVE Easter! I am excited to watch the boys search for Easter egg's left by the mysterious Easter Bunny and also celebrate the LIFE of our Lord and Savior Jesus Christ!
Having Emmett home, bring's such joy to our everyday lives. 
Go Emmett, Go!