2 months can seem like forever....

Some of you may wonder what so many of my status updates, comments and secrets were all about these past two months. Well now that all is said and done I am ready to share what I have been up to… bare with me as I take you on this journey.  

On August 29, 2012 I entered McCallum Place for Eating Disorders. Now I do not have an eating disorder but because of all my surgeries in the past 2 years and being nauseated all the time I was down to about 80 pounds. This is a very dangerous weight and I was most defiantly malnourished.

So on August 29, I started a very intense treatment. I would be at McCallum Place seven days a week for ten hours straight. It was so very hard to be in this place that was so different but, at the same time I learned so much not only about myself but the girls that I spent two months of my life with.

Every day I would arrive in Webster at 9:30 I would start my day with a set of vitals and getting weighed. At about 10:00 we would have morning snack, then “homeroom” group for an hour and then another group till 12:30 when we would sit for lunch. After lunch we would “post” (go around and talk about the meal and how we felt… physically and emotionally). Then it was group time until afternoon snack which took place around 3:00. Then another round of groups, or napping, or even just journaling. Dinner would be at 6:15 with post following and then at 7:30 it was time to go home.

During the week days we would also meet with a therapist three times, a medical doctor once a week, a dietitian two times a week and a psychiatrist or resident two times a week. They would pull us from groups if it was our turn to meet.

Before my first weekend there would come and go I changed from eating 75% to 100% and stayed on that amount the whole time I was there. By weekend number two I had add-on’s (this would be some other food to get even more calories.) That put me up to 4400c calories a day and let me tell you my stomach and body did not always like it.

I cannot lie there were days that I thought I wasn’t going to be able to do it; even times when I wanted to give up and just do it all at home. I had days of nausea and I even had to go to the hospital for my asthma at one point. About a month in I felt so sick and my weight wasn’t moving and I thought I would have to have a feeding tube “dropped” I was able to get out of that by staying positive and just working as hard as I could at eating and breathing and realizing that it was okay to have help and I was not a failure.

With all the groups and working with my care team I learned a lot about myself. The biggest thing was allowing myself to have other feelings. I didn’t have to be happy or even strong all the time. It was okay to lean on others and need them to help me get through hard times.

I have been “strong” for as long as I can remember and it still is hard at times to admit that I am scared, worried or even that I feel alone. All these knew feelings are very real and are taking some time to describe and label but just like everything else I have done I am doing this. I know how to listen to my body now it is time to listen to my emotions as well. I also learned that I deserve things that I otherwise thought that I didn’t.

I met some wonderful girls and have made some really great friends! We all have each other’s back! It’s pretty cool to have a cheering team whenever you need them. I would never change my path for it has taught me a great deal and has helped shape me into the woman I am.

When I entered McCallum Place on August 29, 2012 I weighed 80lbs

When I was discharged on October 24, 2012 I weighed 108lbs.

I am so proud of myself, I feel better, I am able to work out again and for the most part I have little to know nausea. Can’t lie this new role of “living” is a little hard to get into but I sure enjoy it a lot more then feeling and being sick as much as I was.

I want to thank my family and friends for all their love and support. Thank you for all the prayers and kind words. Truth is you can do anything you set your mind to doing… I’m living proof!

Love and prayer until next time,

Em

My Rock

Sometimes you just need to let the love of family and friends carry you along on the days you feel you have no strength.... let them be you rock, your support. That glimpse of the light at the end of the long dark tunnel.

 

Look at all the love and suport on my side!!

I CAN DO THIS!

I WILL DO THIS!

Real or Not

It has been one of those days that never seem to end... and I am so mentally and physically drained and this point in time the only direction from here is up. And I hope this change of course comes sooner rather than later.

 

"You’re still trying to protect me. Real or Not Real....

'Real' because that's what you and I do... protect each other."

Until Next Time

                      Dr. Connors, Me, and Dr. Daud on Dr. Connors last day.... These 2 men take such wonderful care of me!! Love them both so much!

It has been said that saying "See you later." is so much easier then saying "Goodbye" and I believe that this may in fact be as true as true can be.

Tomorrow August 20, 2012 one of my favorite doctors is moving back home to Utah. I am very happy for him and... Well kind of sad for me. You see he came to Missouri Baptist the month before I had my first open heart surgery with Dr. K back in August of 2010... in fact that anniversary is coming very soon. But anyway Dr. Connors has been with me through thick and thin. He has seen me at my lowest and at my happiest. He was even there when I wasn't even in the hospital to see him. This man is a very talented surgeon and I know that he will do great things where ever he goes. I just wish he could stay here in case I ever need his handy work again. Here is praying that I don't and that I can stay out of the hospital for a very very long time!

So last Wednesday I went to see Dr. Connors one last time. I had a perfectly picked out card that said "bye" in many different ways then on the inside it told him the translation of "this really SUCKS" and to me it totally does. I also went on snapfish and made him a little picture book with quotes, song lyrics and many awesome photos that I have captured over the past almost 2 years. He seemed to really like it and promised that he would sit down later and look at it more closely (as he had patients waiting to see him) and that he would email me soon so that I could keep him updated on all my happenings here in St. Louis! It's rough knowing he won't be there but I know that there are other doctors and that sometimes people just have to do what’s best for them even if you don't see it that way.

" I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you..."

God's Time

Spent about 5 days at my home away from home but am doing better and on the road to where I should have been going this whole time...

you know how they say you end up where you are suppose to be... well these past 5 days have been just that. I have learned so much about myself and the journey I am on. I was reminded that people come and go and time does change people but it is still okay to let them in... let them love you the best way they can!

I am so grateful and oh so loved! Thank you all for all your kind words, love and prayers! You are all in my life for a very special reason and I am who I am because of all that has happened to me and all those who have been on this amazing path with me!

love you

love me!

Love

On June 20 I had hernia surgery. It went really well but it was such a mess of a hernia that the doctor kind of had to make up the repair as he went. He did however have to put a JP drain and that was a little on the gross side and this past Monday July 2 it was removed! Also because of all the past surgeries and the constant nausea I have no fat on my body... in fact the doctor said I might be able to feel the repair until I gain some weight. He was right I can feel it... it's not awful just weird.

On June 21 I had a bronch that went well also! I had amazing visitors and was able to get some good rest. I came home on the 22nd and was back to work on the following Tuesday! What can I say I have to keep living and moving right along.

I try to not let surgery or being sick run my life... I have Loeys -Dietz Syndrome so I don't always know what is coming but I trust that I know my body well enough that if something is wrong I will get help I also have wonderful family, friends and doctors all of whom do anything and everything to keep me well and active. I also know that I cannot live in fear of what "might" happen. It is so much easier to live life and enjoy every moment I can.

Just some pictures of family and doctors that have changed my life for the better! Made me the "STRONG" woman I am today!

So much to DO so LITTLE time...

It always seems that I have more to do in a day then there are hours on the clock this meaning something usually has to give... and lately it’s been my sleep. But I must soon change my ways because I am finding that it is very hard to function on 3-4 hours of sleep thus making all those things that I need/have to get done 10 xs harder.

So tonight I will go to bed at a decent hour so that I can wake up ready to accomplish my day!

I’ll give it a week see where it gets me! My guess is not only will I have energy for my day but I will also get things crossed off my to do list!

“You are not defeated when you lose. You are defeated when you quit.”

Do you Know

I was listening to my favorite music COUNTRY in the car today and heard the song "You Don't Know Her Like I Do"

Do you ever wonder who knows you maybe more than you know yourself? Or if you even know someone that well? Of course this song is about a break-up... but it got me to thinking about all my friends and family and all those who have spent endless hours and time taking care of me in my weakest most vulnerable moments. To know and feel that love is breathtaking. What an amazing feeling to know that you are loved and cared for by so many people.

                      A fun picture of some of my best friends!

So thank you to all my friends, family, and caregivers for loving me and KNOWING me... maybe even MORE then I KNOW myself! I am so lucky to have you and to know that I am never alone on this road of life!

Fearless...

It has been one week since my new GI doctor took me off all my nausea drugs. It has been a week of ups and downs. But things seem to be getting better! I just need to remember that it is okay to take it day by day even hour by hour if I need to.

Also have been trying to get out a little more so that I can see my friends and just LIVE again. It is so good to feel and to not be attached to so many meds that were hurting me more than helping. Sometimes you need to make changes because even though you trust the doctor to do the best thing I know my body better than anyone so it is 100% my job to make sure that I get the proper help and care that I need. And I have to gain weight... there is no try to... NOPE. I have to gain weight if I want to feel better.

I am so excited that summer is around the corner I look forward to sunny days by the pool and cool nights watching my boys of summer!

Thank you everyone for all your thoughts and prayers! I love you all! Also thank you for all your kind words and love! I am so very BLESSED to have you in my life!

Until Next Time Love and Prayers Always,

Em

"One of the BEST feelings in the world is when you HUG someone you LOVE, and they HUG you back even TIGHTER!"

                             Love this picture so much! Jesus is always with me and my doctors!

Down and Out

So I guess we will just say that I have chronic nausea got to admit it’s the worst feeling ever.  And I would do anything in the world to not have it…

I had my first open heart surgery when I was 9 years old. Then four more all before the age of 24, I grew up having asthma and then in January of 2011 I had my left lung removed.  I guess after all that one might think that nausea isn’t so bad considering. And maybe it would be if I weighed more than a kid.

After going to my primary I learned so much in fact I need to call him more and the G.I. doctor less…. Well maybe he found me a new one today. Everything that was said in that room today was true and I guess because I trust him so very much I was able to let down my guard and cry like I’ve needed to for so long now.

 Srong people cry too!

I don’t have to have it all together all the time the people who care and love me will always love me thru thick and thin and I had that great reminder today. I have a lot of weight to gain and a lot of healing that still needs to take place both mentally, and physically. But with all the love and support that I have though family and friends I know that I will be ok.

Why did I think I had to have it all together all the time? Because I would rather help, worry or fix someone else’s problem. I dont need people to worry with me that have for so long lets take care of others. (this is what I think at least)

I also realized that I don’t have to be super happy and excited all the time and it is okay to switch doctors if you don’t trust, or believe that the one you have for you is the right one even if they are the smartest ones out there.

I know that I will be ok! I know that it is okay to cry it is NOT a sign of weakness and its okay to have days that are not perfect. I also know that I have great family and amazing friends whom I love with all my heart and soul and I thank them for being by my side though thick and thin… The ride is not over yet but like my doctor I got to keep chugging along because you never know what the bigger plane is and you never know what surprise this trial cause be getting you ready for. I though the healing process was over but the truth is its NOT…. Not yet. Got to keep fighting the fight but you can cry if you need to “I will be there to dry your eyes.”

“When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.”

It has been a rough day but I know in my heart that better days are to come!

Until Next Time

Love and Prayers,

EM

A little late...

So the last time that I updated this was after I had a bronc and met Dr. Patterson!

So on March 20^th I went down to Barnes to have another bronc this time Dr. Patterson would be the doctor performing the procedure.  It went really well in fact everything moved very fast and turned out I knew my anesthesiologist (Dr. Meek).

                 Dr. Meek is the one on the left... and yes his hair always looks perfect!

He is a very sweet, brilliant doctor with the bed side manners of a saint! So when I was done I went to recovery 1 to wake up and make sure that everything was okay. Then after that it was off to recovery 2 where I would get to see my mom and talk to Dr. Patterson. Dr. Patterson informed both my mom and I that the leak where air was coming into my chest cavity was much smaller than the pictures he had seen the weeks before. And what Dr. Connors did was working it just needed more time to show the outcome! He went ahead and added more gel/glue and told me to get a x-ray in 2-3 weeks and that I did not need to see him unless I became really sick or Dr. Daud or Connors needed him to!

                   Some of the men who work hard to keep me active. Connors, K, and Mauney

                                

                             Wish I had a picture of me and Dr. Daud I will work on that.

So after that it was home bond to rest. Little did I know that when I woke up I would have nausea so bad that I would need to go to Missouri Baptist to try and control the awful feeling that would not go away. I spent 8 days in the hospital and still didn’t feel very good when I came home. But with tender, love and care I am starting to feel better!

Easter was good and I was able to go back to work but then this pass Thursday I had a little set back with feeling sick again and ended up having to give up my baseball tickets to my mom and sis. (Anyone who knows me knows that there is not much that can keep me from my boys of summer.)

Monday I took the day off rested up and went and saw the doctor…. Not really sure why nothing changed that much that I couldn’t have done over the phone. But the best part was that I ran into Dr. Daud and he had me go get my overdue x-ray and said we would be in touch later that day…

At 3:17 on Monday April 16th I received the best news ever! The leak is no more my chest cavity is no longer full of air but filled with fluid like it should be! And I don’t need to come see him till summer and I can start working out again.

Today my friends Carrie and Jim had their second baby. A sweet little boy named Michael James! And my friend Jill is getting married this weekend! I love good news and hope that I can share good news with you all more often! Thanks for all the love and prayers!

Also please continue to keep sweet Katie in your thoughts and prayers!

                                                          Isn't Katie BEAUTIFUL?!!!!!

“Believe that there's light at the end of the tunnel. Believe that you might be that light for someone else.”

I can handle news like this.....

Today I had an x-ray today to check on the leak that the doctors have been trying to fix... And fluid is back and air is gone!

When I am off my meds I will explain this better!

"How could you expect me to live without you? One cannont become accustomed to the loss of happiness."

WHY NOT YOU?

It’s been awhile since I have written and a lot has gone down since then but for now I leave you with the question...

 “Why me?”

Think about it.

 Brings up a lot of things doesn’t it?

Stay tuned!

P.S. Happy Opening Day To My St. Louis Cards! Now this is the life!

Just Another Day...

So last Wednesday Dr. Connors and Dr. Daud had me come in for another bronc. It should that I had indeed coughed up the hole plug and as of then there was no sign of scar tissue growth but that can take some time.

I arrived at the hospital at 7am and was discharged at 1130. Got to love when they can get you in and out of the hospital in a timely fashion. So mom took me to grab lunch and then it was home to sleep, or at least that was the plan. No sooner did I fall asleep Dr. Connors called me to tell me what he saw and what he believed the best plan of action would be.  The plan would be to go meet a surgeon at Barnes who has more experience with this than any other person in St. Louis. So I okayed it and hung up to try to go back to sleep. Again no sooner had I fallen asleep my phone was going off. It was Dr. Connors nurse Nancy calling to tell me that Dr. Patterson could see me that day if I had time to get down there. So I was up and out of bed and heading down to Barnes with my mom to meet the guy that was either going to make me really mad or make me feel ok about all this.

Dr. Patterson does not want to cut me open to fix the leak since I am not symptomatic. Instead we will try some other glues/jells to close the hole, and I will just stay on my antibiotic till something works.

So I will be heading to Barnes on Tuesday for yet another bronc but another non invasive try at patching this hole. I hope it works because I would really like to start working out again!

We will all just keep praying that it works and for all those that take care of me and my family.

I do have a couple prayer request

·         Little Miss Katie http://kellymanno.blogspot.com/2012/03/so-this-is-what-chemotherapy-looks-like.html?spref=fb

·         A family in our parish needs  prayers a mom and her 3 daughters are now dead… we may never know what drove the mom to kill them and then take her own life…. You think it will never happen to someone you know… So sad… life is so precious

·         For all those in the medical field that they remember that there patients are not just the symptoms or syndromes that they have but they are PEOPLE with FEELINGS.

Thank you so much and until next time love and prayers,

Em

HEROS

Sometimes you just need to stop and thank God for for all the people that he has put in your life. I am not the person I was yesterday, but I am an ever changing person who loves LIFE and the people that have come into it! Thank you for all the lessons learned!

"You don't have to be a 'person of influence' to be influential. In fact, the most influential people in my life are probably not even aware of the things they've taught me." Thanks for teaching me so much without even trying!

        I just wanted to send a little note of thanks to all my heros and teachers! I want you all to know that I pray for you every day. I will never forget what you have done for me and for that I am grateful.

Without you I would not know compassion, empathy and love like I do now. You are truly an amazing and I am so very lucky to have had you in my life! I wish you greatness in all you do! And I look forward to the next time I see you again!

 Dr. Huddelston and I. This man operated on me 4+ times and because of his skill, compassion and love of children I have a better HEART!

 Dr. Sharkey and I. This woman was my cardio doc while I was at Children's and I didn't feel like just another paitent but a part of her family! I love this woman and what she has done for me!

 

Dr. Connors, Me, Dr. K and Dr. Mauney. I challenge these surgeons all the time and I even get mad and test them in other ways but they are always fighting for me and making sure that I am getting the best!

I cannot find my picture of Dr. Braverman but he really is the man behind all the love and support I get. He is my cardio doc a true Hero. He knows his stuff and stays informed and on top of Loeys-Dietz Syndrome information!

I really am so blessed to have all these people in my life.

I hope to have pictures of me and some of the wonderful nurses who work so hard to keep me happy and make sure that I am doing well! It is so nice to know that there love and support is always present. I am one lucky girl!

"If you knew me yesterday, please do not think that I am the same person that you are meeting today. I have experienced more of life, I have encountered new depths in those I love, I have suffered and prayed, and I am different."

These are just a few of the many HEROS in my life so stay tuned and you can meet some more!

Basketball Anyone?

This weekend I spent most of my time cheering on my 11 year old brother and his friends as they took part in a basketball tournament. This is one of those dream teams where every player brings something unique to the court and they all work together to make their talents shine!

                                         It all started back when these 2 were in preschool.

They had indoor recess because it was raining outside. My mom came to pick up Nathan that day from school and the teacher told my mom that she believed Nathan and Jake would be some pretty good basketball players someday… Well what do you know?

After beginner leagues, YMCA training camps, and a lot of practice they met again on the court each bringing a few buddies that loved the game just as much as they did and 2 very awesome coaches. And before we knew it they were winning game after game, learning knew plays and even some tricks. And one year turned into two and two into three and year after year they WON every single game they set out to play. They have talent, they have WILL and they love the SWEET taste of VICTORY!!!  They are always a fun group of boys to watch always respectful to their peers and each other and always excited and willing to listen to what the coach wants to tell them!

So this weekend after the season was over and they enjoyed a week of they hit the courts for a tournament. And sometime when you beat teams that you think are hard you let down your guard and you don’t play with the need to fight to win…. Today these boys lost their first game ever… it was hard on them and hurt but I have never seen a group of boys like them… they lined up said their “good game” to the other team then turned around and pated each other on the back. They have nothing to hang their heads for. They played hard and they played well and everyone knows as hard as you try you cannot always WIN THEM ALL.

Nathan, Matt, and Simon on the bench getting my guess is a pep talk from coach Gary reminding them that even though they could not win this game that it was okay to be upset and disappointed but it was a great weekend and they played hard and showed great effort.

So to my Rockwood boys thank you so very much for the memories and keep them coming! You had a great season and you all played with heart! Way to always play unselfishly and as a team! You all bring so much to the court and I look forward to watching and cheering you all on again next year!

                                  2nd place isn't really so bad when you have great friends to stand by

The Little Things

Sometimes the best parts of life are those little things that we don’t always notice… Like the love of family, and friends. A warm meal, a place to sleep when you are tired and just the simple joy of the chance to live another day!

Had a very busy day at work but came home and had dinner with my family and then celebrated my sister’s junior ring…. My little sister isn’t so little. It is hard to believe that she will be a senior next year and then college and finding her place in this world. She also isn’t so little in fact she is much taller then I and a beauty beyond all beauties. I may complain about her but I love her more than anything. I am so excited tonight got to be about her. After all I go through with doctors, test and surgeries sometimes the sibs get left in the dark. Not tonight! Tonight Anne shined bright!

What a wonderful evening! Remember it doesn't have to be over the top to have meaning! The little things like being with family can be the best times.

Just Take One Day At a Time

This is something I wrote back on January 24, 2012 one year after my left lung was removed. I am not sure if I want to work backwards or start back at the very beginning so for now enjoy!

I cannot wipe the smile off my face! From the moment I woke up today I have been so happy and full of life.

Today is the one year anniversary of the day my family, friends and I went through hell. Today is the anniversary of the day my life was forever changed. I now have one lung. And on this day a year ago and the days that followed I fought like hell to get where I am right now.

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”

I am not 100% yet but I am so much better than I was a year ago, Who could have imagined where I would be after that awful week. I hear stories about that week and think "wow my body was tired but, my soul, my strong soul was not going to give up."

I try to choose to live everyday to the fullest to make the most of what I have today... I am human though and I have bad days but those days seem to be far and few between. Today after work I couldn't help but pick up the phone and call my surgeon and thank him for helping to play a part in changing my life. I didn't get to talk to him but I talked with his nurse and she was so happy to from me and said she would be sure to let Dr. K and all the guys (Connors and Mauney)  know that I called to say Happy 1 year!

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place."

I do still have memories that come flashing back about that time in the hospital... they are mostly ok thoughts  like the day that I had the breathing tube removed for good... I remember my 3 visitors that I actually got to talk to... my cousin Diane, my dad, and dr. Rinder. Then we had a big winter storm and I didn't see anyone for a day. and then there are the memories I wish I could forget like lying down in the CT scan and not being able to breathe that's when I knew whatever was wrong with me was bad and then I would forget everything till that day I breathed on my own. The brain is an amazing organ and it does a pretty good job of forgetting scary things. But since then life is good and I plan on it staying this way for a very very long time.

"Scars are just tattoos with BETTER stories." and I have a lot of them and I would never want to go through all of this again but I would NEVER change it. My bumps in the road have made me who I am today and I love the person that person!

"If you knew me yesterday, please do not think that I am the same person you are meeting today. I have experience more of life, I have encountered new depths in those I love, I have suffered and prayed, and I am different"

I want to thank first and foremost my parents for always being by my side. Taking care of me and loving me though everything... For what I have gone though so have you. My siblings I know that I put stress and fear in your young innocent lives... I love you both and am so proud to be your big sister. To my aunts, uncles, cousins and my whole family I love you and I know that I could not have gotten this far without your love and prayers. To my friends I would name you all but then if I forgot someone I would feel dumb I love you all and am so happy that you are in my life. To the doctors (new and old) both those that took care of me and those who just came in to spend time with me thank you. Thank you for answering God's call. Thank you for shaping my life and making me the woman I am today. To the nurses (new and old) thank you for showing me compassion and loving me as if I was one of your family members. I will remember your love and try to always pay it forward. To PT and OT thank you for being my support to lean on when I had to regain strength to walk and hold/pick up things... thanks for knowing when to push my harder and knowing when I just needed a pep talk of inspiration to restore my faith in ME.

They say it takes courage I say it just takes faith, prayers, and a whole lot of love!

Thank you everyone for being my prayer warriors, my cheerleaders, my support system. I love you all so very much!

Until next time love and prayers,

Em

"You don't have to be a 'person of influence' to be influential. In fact the most influential people in my life are probably not even aware of the things they have taught me."

Who I Am

At the age of 9 I had my first open heart surgery. I am now 26 and life and thrown me a lot of curves but not without me navigating my way though them. I have learned with family, friends, love, faith and the right attitude life isn’t so bad.

In 2005 I was diagnosed with Loeys-Dietz Syndrome and I hope to use this blog to teach others more about this syndrome and to also share with you my ups and downs and everything in-between!

Stronger is the name of my blog and the reason is really just the meaning of the word itself. Everything I have been though, everyone I have met, all the lives that have touched mine have made me the woman I am today. Although the road is rarely easy it is more than worth it!

This is the picture of my tattoo that I got March 1, 2012 the same day that I left the hospital! The date on it is 1-24-11 this is the day that I had my lung removed. And the word STRONGER!

WONDER

“Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation…”

It has been one hell of a couple weeks. On Tuesday February 21st I decided that it would be in my best interest to call the doctor and let him know that I had been having some breathing issues the night before. He started me right up on a dose of antibiotics and a steroid and told me to get an x-ray on Wednesday to make sure there was no sign of pneumonia.

Of course when I go get this x-ray on Wednesday I feel better but go anyway... In a matter of hours my lung doctor is telling his office to call me and have me call his cell phone... So I did... Turns out I have air in the empty chest cavity where my lung use to be (there is suppose to be fluid here). The lung that is not there has been nick named the phantom lung because even though it is gone it is still causing problems.

It was decided by Dr. Daud (lung doc) and Dr. Connors (one of my surgeons) that I needed to have a test called a bronchoscopy (aka bronc) This would allow then to pass thru my trachea to allow them to look at my right lung and stump (the piece that joins the airway when you have two lungs).So on Thursday the 23rd I got up at the crack of dawn to go have this test.... (I thought I would get to come home after).

When looking at my stump they found that there are little holes which explain why I have air in the chest cavity but the other question is where is the fluid.... My right lung looks good and is working great so all of this leaves us all puzzled. Where did the fluid go and why is this happening 13 months after the lung was removed?  So I was admitted to Missouri Baptist till Dr. Connors could figure out what to do... and let me tell you that took a lot of doctors from all over. They couldn’t seem to shake the fact that I was so healthy with no sign of infection and no symptoms except for that one night... I am use to puzzling the docs I just need them to remember that I am human and have feelings and needs and am NOT their science experiment.


Friday I was made NPO (no food or drink by mouth) the only problem with this was I didn't know why I was NPO until Dr. Connors came by at 3:30pm to tell me he was taking me to the operating room... WHAT? WHY? Turns out it was nothing he just wanted to go scope my chest (three little holes) that are actually driving me crazy. The reason for this was so that he could try and see the stump from this angle and check for infection. The biggest worry this whole time was infection because the air we breathe is not clean and if it is leaking into my chest cavity then it could damage other parts of me. Anyway there was no sign of infection and he couldn’t even see the stump do to scar tissue growth (this is a good thing). So my only issue was if I was ok with no infection why did he send me to the CVR (intensive care unit)? The answer.... he was just playing on the cautious side.


So Saturday I was back to the step down unit and this is where I sat Sunday, Monday and then finally on Tuesday night we had a plan. Wednesday I would head back to the operating room and get another bronc this time Dr. Connors was going to take a jell/glue substance to plug the tiny holes. He also "roughed" up the area around the staples that were already there trying to give the tissue a reason to have scar tissue grow.

The procedure went well and that night when he came by to see how I was doing I kicked my parents out of my room to ask him a question... and I love how this question caught him off guard. "Dr. Connors, can I get a tattoo.... you know while my INR is at a safe level and I am on all these antibiotics?... you see I've never really been a rebel and I just want this one thing that means the world to me." "Of course you can Em, that is fine.... can I ask what you are going to get?"

So Thursday night after I had been discharged me and three of my friends headed out to the Delmar Loop so that I could get inked. I love it and am so very happy with the way it turned out!


I also had the Gala this weekend! I love seeing all my doctors outside of the hospital. It's a great time and a wonderful way to get to know them and their families.... see that they are human too!! I think the best part was seeing my surgeon from Children’s Dr. Huddleston he is an amazing man and has done so much for me and taught me a world of things without even trying! I love him!

I did cough up some of the "plug" but I am not having any problems so I will go Wednesday to get another x-ray and get my stitches out and then from there Dr. Daud and Dr. Connors will decide when I need to come back and have another bronc.

Today was back to the grind of life and I love it! All though I not out of the woods on this matter this is so minor compared to everything else I have been though these past can you believe it almost 2 years!  Thanks for all the prayers and love and sweet comments know that you all are always on my mind and in my heart!


Until Next Time Love Me,

Em

“O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation…”