Double Aortic Arch - Hospital Stay

Let me just start by saying thank God for amazing nurses; except for one and we will get to that later on in this story. My hospital stay is much of a blur, but there were definitely some funny moments I cant help but remember.

Friday Night

Oh boy was it a doozy (you'll see me use this word describing a lot)! I somewhat remember my parents and Michael leaving because the ICU shut down at 8:00 for visitors. This is the night I met my AMAZING nurse Fabiola and she was FABULOUS. I could hardly sleep and she never left my side. I started swelling majorly, so much so that they had to cut my wrist bands off and switch them to the other arm. I had 5 IVs and was annoyed with having to lay flat on my back, but Fabiola made sure I was as comfortable as possible.Before her shift ended at 6 a.m. Saturday morning she and another nurse got me up for the first time..... I was terrified of what was about to happen, but it wasn't as bad as I had anticipated. Oh and all of the swelling I mentioned above, well I gained 11 pounds of fluid. 

Saturday

 This was the first time I really realized what had just happened to me. I felt like I had been hit by something much larger than a Mack truck. I had IVs and tubes hanging from everywhere, I was swollen. I couldn't move without any assistance. I was able to get my catheter out this day ( all the praise hands ). I took my first walk after breakfast this day. Michael tagged along with me, my nurse, my chest tubes, and my cart I had to use to push. Things were going really well at first until I got very nauseous, but nothing zofran can't fix! Nothing else too exciting happened on this day. LOTS of pain medication, other medications, and taking a couple of walks. 

Sunday

CHEST TUBES ARE OUT!!!!! Those two things were a son of a bitch and made me so uncomfortable. I was so nervous when having them taken out, it did not hurt one bit and I felt so much relief after they were gone. On this day I had a lot of extra pain that I had not had the day before and kept complaining about it being extra painful. My nurse kindly brought me pain medication but also informed me that I had a rib removed during surgery. Yeah, she nonchalantly told me they removed a rib because it was in the way.

At this point basically was living off of watermelon Italian ice, but no worries the doctors told me it was very normal for me to have no appetite. This day my mom and step dad came around lunch time and they brought me every type of quesadilla from Chili's. It looked amazing and I tried to chow down on a much as I could, but that resulted in about maybe three pieces eaten. 

Later in the day Michael and Christina came to visit. Remember its January 9th at this point and NFL are getting ready for playoffs ( GO PACK GO ). So we turned the game on, can't remember who they were playing. So game comes on not really sure what quarter it was because remember LOTS of pain meds, and Jordy Nelson goes down. Side note I love giraffes and my sweet Michael bought me a giraffe this day and we named him Jordy Rodgers (Jordy Nelson and Aaron Rodgers). So later in the game we find out that Nelson broke a rib and I got a kick out of telling Michael to tweet Jordy and see if he needed a new one because I had one he could use, he didn't get a reply haha. Michael also still tells me often that I should have asked to keep the rib. 

Monday

I don't really remember anything exciting about this day except for the night. It was literally a night from hell and I had the worse experience ever with my nurse and aide. This was my first night without my same nurse Fabiola and the ngiht before I would go home. I'll sum the story up quick, I was in a tremendous amount of pain, my nurse told me to hurry up because she has other patients,  my aide ignored me for 30+ minuets and then by the time I called again I was so uncomfortable I was crying my heart rate was through the room and every alarm I had on me was being set off, my nurse forgot about me and luckily there was another nturse who gave me my medication promptly, got me comfortable, and then had my nurse come get me more medication to be sure I had a good night. Oh a goodnight I did have after I got that IV medication. 

Tuesday

DR. E: do you want to go home today

ME: YES!!!!

Finally I was able to go home. Discharge took about an hour or two and I had never been so happy to see the outside world again. The ride home was a doozy. My mom had to drive very slow, not hit any bumps, and my red heart pillow was my best friend. I got home a little before lunch time and then that is when the recovery really started.

Another post will come soon all about my at home recovery. A very tough night was ahead for me.

Double Aortic Arch- Surgery Day

January 6th 2017 . . . .

Okay so we are gonna rewind just a couple of days. 

It was finally the new year and I gave a cheers to a VERY healthy new year! My dad and step-mom (Kimberly) came into town on the 4th and we had a day full of fun planned for the 5th. That Wednesday my dad and Kimberly flew in and my sister and I went to visit them at the hotel we hung out and then they rested a bit before coming over to our house to have dinner. We ordered Rib House, all ate and this was the first time I was meeting Kimberly now that I think about it. Everyone was over we all just had fun and made light of what was happening in just a few days. 

Thursday, my sister and I got up semi early and went to meet my dad and Kimberly at the hotel to go shopping. We shopped all day and then when it started to get late (aka rush hour) we headed home. I gave my see ya tomrorow's and my sister and I headed home. When I got home my people all came to visit me and give me well wishes. We all hung out and I attempted to eat as much as possible before midnight because why not. I failed terribly, I honestly could hardly eat anything and I am sure it was because of nerves. Everyone went home around nine and then I prepared for the next day. 

The night before my mom helped me pack a hospital bag. We were told I would be there about six days. My bag included : PJs, phone charger, socks, fuzzy socks, slippers, and about 12 pair of underwear. My mom laughed at me when I made her promise that I would get to wear underwear after my surgery. She told me that would be the least of my worries and I thought she was nuts for telling me that, I was very serious about having underwear on. Anyways, that night I had a lot of nerves. Michael and I laid down a little before midnight and I remember not falling asleep until around two AM and then waking up at three AM and forcing myself not to get up and get water. 

Now finally January 6th 2017. 

I woke up bright and early at 6AM to be at the hospital for 7AM and it was snowing like crazy. Good thing I only had to put something simple on and not do my hair because we had to leave sooner than we anticipated because NEW ENGLAND SNOW. My poor dad is all I have to say. He always visits in the summer and has NEVER had to deal with the snow. Well poor thing had to clean off his car with a Walmart plastic bag, his hand had to of been ice. 

When we got to the hospital we went to the room I was told to go to and did the whole check in thing. My whole crew was there. Mom, Adi, Dad, Kimberly, Michael, Liz, and Christina. We were called upstairs to where my family would wait and where I would do pre-op. My mom and dad wouldn't leave my side.

They took me back to pre-op, I got changed, they hooked me up to the monitors (hello high BP), started an IV, and did the routine pre-op stuff. I was a nervous wreck, we all were, but I was trying not to show it. The anesthesiologist came in and well lets just say I didn't like her too much, she made me cry on the morning of the scariest days of my life. Back to anesthesiologist part, she came in to asked questions and explained a lot of things, also things I had no idea would be happening. During her explanation of things I got very upset and started crying for Michael and my dad being the wonderful dad he is told me he loved me kissed me and went and got Michael for me while I through tears said " don't tell anybody I'm crying ". I was a mess. 

Then it was time to say see you later. I had finally composed myself and I was getting wheeled back to the OR. I wish I could have gotten my blood pressure and heart rate at that moment because I can only imagine how high it was.

I remember feeling so scared once we got into the OR. I shifted from gurney to the operating table and laid down. Then one of my nurses grabbed my hand (and did not let go until I was asleep) and at that moment I felt so much comfort. I remember thinking she must be a mom. They gave me some loopy medicine, Dr. E and Dr. Darr came in and then they 

put the mask over my face to put me to sleep. 

My surgery lasted about 4-5 hours and I woke up in ICU later that afternoon. My family was able to see me and I didn't have to wake up with a vent and I was happy about that.

My first hours after waking up were a big blur and the stay in the hospital was an overall very good one. I will write post soon about my stay and recovery in the hospital and about once I got home. 

Thanks for letting me be open and vulnerable. Some may wonder why does she want to remember these things in such detail, but it was such a major life moment that its something I will never forget. It would also be something I would later be able to help someone else through.

Double Aortic Arch - Meeting Dr. E

In my previous Double Aortic Arch post I explained how I found out I had the congenital heart defect and that in August of 2016 I had become very symptomatic.

So lets continue on with everything...

After speaking to my GI and being informed that I would need the surgery my GI referred me to a cardiothoracic surgeon Dr. Darr. I met with him in the middle of September. We discussed what my GI had already told me and he informed me that I would indeed need the operation. My mom was with me that day and asked all the questions I couldn't think to ask. Dr. Darr explained that the surgery is major and that they would have to cut my chest open and that I would be in the hospital for a bit after the surgery. Before the surgery was scheduled he informed me that he would like for me to see another surgeon that had experience in doing a Double Aortic Arch repair surgery because he had none. His secretary would get with me and set up the appointment with Dr. Elefteriades. I left this appointment scared, anxious, confused, unsettled, and a lot of wondering. 

The next week I got a call and had an appointment set up with Dr. E for November 22nd at 3PM. I googled Dr. E and if you do too you will find that he is one of the best doctors.

Those next few weeks would seem like the longest weeks of my life. My mind was constantly on the surgery and of course I had the not so bright idea of googling things.

Finally the day had come I would see Dr. Elefteriades and find out more about the surgery and when it would happen and how soon it would need to happen. My mom met me at the doctors office downtown and we both went in together. After finally finding the office I signed in and we waited. We looked around the very small office and read the plaques and articles hanging around. One thing that stood out to me was a world map that lit up, and for every light that was on was where Dr. E had either given a speech or preformed a surgery. This board was lit up all over. I remember thinking "this guy is pretty amazing". 

After sitting for a bit we were finally called back. Before I came for this visit I was sent for a CT scan of the heart so that they could get a good look at the arch and so that it could be studied before doing the operation. 

Meeting Dr. E for me was a little intimidating. I think more because I was afraid of what was to come. He introduced himself asked how we  found out about the arch, asked my mom some questions about when I was younger health wise, and asked other questions regarding the arch and my symptoms. 

Then he told us about his findings. He called my mom and I both to the other side of his desk and showed us a image on his computer and showed us what to look at and started scrolling. What we saw was jaw dropping especially after he explained everything it was that we were seeing. My DAA was much worse than we had originally thought. That choking feeling and being out of breathe easily, well my arch was literally choking me to death from the inside and for multiple seconds at a time. 

Dr. E began to explain that they only do the surgery when symptomatic and that I was very symptomatic. I would need the surgery and he wanted to possibly do it before the end of the year. He let us know that it was a very major surgery and that it could be life or death. "Life or death" I never in a million years did I think that I would hear those words from a surgeon. 

He let me know that his front office ladies would get with me to confirm a surgery date and that would be the next time he sees me. 

About a week later is when we confirmed January 6th 2017. I would get to enjoy Christmas and New Years. Enjoy I did and worried. 

I would be lying if I said I didn't cry almost everyday. I could hardly talk to my mom because I was so scared and I couldn't show her that I was. I didn't speak of the surgery I kept it to myself unless it got to be too much that day and then I would talk to Michael about it.

 I prayed A LOT! I would cry in the mornings on my way to work. It was a very very hard time for me. I leaned on GOD a lot during this time. I found a lot of comfort in praying and just giving the whole situation to him. I remember one night laying in bed and just crying out to God and giving it all 100% to him and finally getting a sense of comfort and a feeling of being okay. Please don't think for one second that I didn't trust my doctors fully because I did, but until your in a situation like this you will never know the nerves and feelings you get. 

January 6th came fast... and it SAVED MY LIFE.

Double Aortic Arch - How I Found Out

It was the summer before I started 6th grade; the last grade of middle school [FINALLY]. My sister and I always spent a few weeks in Georgia with our grandparents. My mom would always bring us down one weekend and then come back two weeks later. We always had fun, and thought that dollar general was the best thing ever. Back when we didn't have cell phones, or iPads, or any of that jazz. Good good memories.

So August of 2005 my mom had come down for the weekend to pick my sister and I up to head back home to Alabama. We had the typical weekend at Granny and PawPaws - playing outside, making meal orders for the day, being way too loud, playing in the garden and helping pick.... that's where finding a knot comes in.

I am the "problem" child. The one who always was/is sick and has a couple health issues. After running through the corn about 100 times and coming in for the night my mom noticed my chest was very red - as if I was breaking out from being in the corn - and as I was touching my chest I found a knot at the bottom of my diaphragm. We didn't think to much of it but mom mentioned we would see the pediatrician once we got back home.

Fast forward to going home, making the appointment, and finally we are at the doctor. Dr. Favort checked me out and stated she "believed it was just how I was growing, but lets get an x-ray just to be sure." So off the Children's Hospital of Alabama we went. Once we arrived we did the typical waiting, they called us back got the x-ray and then we were to wait, and that's when things changed.

I remember the doctor coming in and asking " does she have any breathing problems?" "Yes" my mom said "asthma". He left the room and then came back with another doctor. From there they explained that I was born with a Double Aortic Arch and that I would need to see a cardiologist. It was a lot at once. My mom and dad both had many questions.

Within a couple weeks of the x-ray and scheduling an appointment with a cardiologist it was finally the time to go and get this thing figured out. So remember how I said it was the summer of starting 6th grade? Well guess what decided to come for the first time the morning of all the testing with the cardiologist??? Yeah you guessed right, mother nature. I think my mom freaked out more than I did.

Children's of Alabama is the local hospital. We went there for testing. This day we met with a cardiologist and he explained I would go through a series of testing that day which included : a stress test, CT scan, and some x-rays.

We found out that afternoon after a long day that I indeed had a Double Aortic Arch. It is a congenital heart defect. It is VERY rare. The doctor informed us that at the time I could have it corrected, but that it wasn't necessary. My mom opted that I didn't have the surgery.

Fast-forward 11 years and August of 2016 I started always feeling choked and sometimes had a hard time swallowing. I let my GI know of my problem and she had me go for a barium swallow. The test showed that I didn't have anything wrong with my esophagus, but that it was the Double Aortic Arch causing me all of my problems and I was informed that I would need to have surgery to correct it.

After getting the news of needing major heart surgery I freaked out a little. At twenty-three that was not on my agenda and I was terrified. The next couple months would bring a lot more health problems and I will get to all of that on another post.