Well hello there, world!

Hello to all of my wonderful followers and readers!

Yeah, it's been a really long time. Almost three months to the day. But it's been a crazy time these past few months, so I am finally here to update all of you, because I know a lot of you have been waiting for a new post.

So I guess I should start from July 10th, since that's the last time I updated you guys.

Last time I talked to you guys, my mom and I were going down to Florida the next day to see my aunt and cousin for a vacation. And vacation we did. We had so much time, but honestly anytime I am with those people, it's a great time. We ziplined in the blazing heat, took boat rides, spent hours on the beach reading gossip magazines and good books, ate some delicious food (homecooked and out to eat), went shopping downtown, and went on another tour of the city. It was all pretty perfect!

On the following Tuesday, my mom and I headed to Gainesville to see my doctor while my aunt and cousin went to the beach (must be nice). We made the trip and got into the room. The doctor walked in and immediately her eyes widened like I've never seen before. She gave me a huge hug and said I looked great. She ordered a ton of bloodwork (9 vials of blood the following week) and said I needed to have another MRI later in the year to see if everything was still as it should be. And that was that. She said she would see me in December, and I went on my way.

The next day, we drove my cousin and aunt to the airport and made our way back to Fort Mill, which is where I stayed for almost a full four weeks. It was wonderful. I got to do everything I had missed doing and so much more. I saw so many friends and family and was able to relax and conquer my next goal. Gain weight.

Not many people can say that they want to gain weight. But I needed to. I was literally skin and bones and even though I was ten times healthier than I was just a couple months before, I still looked unhealthy. So I upped the protein shakes and ate healthy, but didn't shy away from much.

I then returned to Florida in the middle of August. I came back and got everything back to normal at my apartment (my plants, cleaning, buying groceries, etc.) and then waited for my new roommate to move in. She came on Thursday, and then I was almost back to my usual self. I had an apartment to take care of, a roommate across the hall, and goals for myself and the coming semester.

And then life kind of halted.

I had decided to show Ashley (my roommate) around St. Augustine. We started downtown and walked around the streets while looking around, shopping, and just talking. We were on our way back to my car when I got a call from my mom. I knew something was up immediately because it was during school hours and she never called during that time. She told me she was on the way to the hospital to see my dad, who had been in a freak accident. So here is what she poste don Facebook. It's the best way to explain it...

"So...on Wednesday, Chris was in a freak accident while he was playing golf at one of his events in Denver, NC. While he was playing, a storm came up pretty quickly. He stopped to wait on the guys he was playing with to tell them they should go to the closest shelter and as they were taking off lightning struck a tree and the tree fell on his cart. He was knocked unconscious for about ten minutes and had to be cut out from under the tree and cart by a chainsaw. He was taken to CMC Main in Charlotte. After many scans it was determined that he had no major head trauma, but he has two fractured thoracic vertebrae, fractured C6 vertebrae, and swelling from T7 down his spine. He has a gash and bump on the top of his head and bruising across his shoulders and in odd places all over his body. He's in a "turtle shell" back brace and his BP is running really high. He is still in the hospital but we are looking to go home tonight or tomorrow.
My little family has been through a lot this past year. We have faith that there is a reason for our misfortunes and that we will soon see what God's plan truly is. We are strong and through God's work, we will remain strong. Please pray for our strength, health, healing and that someday we can find humor in these events."

After getting this news, I told my roommate I didn't quite want to go home because I just had too much on my mind. I decided to drive her around Anastasia Island before we went to get gluten free pizza at Mellow Mushroom.

As I was showing her around, we saw the truck in front of us go across two lanes of traffic. It was like he had forgotten his turn and because there was no one coming towards us, just decided to cross from our lane. Ashley looked behind us and saw that he had jumped the curb and had crashed into a parked car, pinning it between his truck and a palm tree. 

Me being me, I quickly u-turned and went back to the truck. I quickly parked and threw my keys to Ashley. I ran over to the truck and saw a woman calling 911 and another woman banging on the window of the truck. I tried the passenger door and after finding it was locked, decided it was time to break the window because the man was clearly not responsive. So as I was about to break it, a contractor stopped to ask if I needed help. I asked if he would break the window in the left corner on the passenger side and he pulled out a mallet and after a few hits, it finally shattered. I immediately climbed in and put the car in park and pulled out the keys. I grabbed his wrist and counted his pulse while giving him my spiel (my name and that I was first aid certified and was willing to help). He nodded slightly and then I got him to look at me. I suspected that he had had a stroke, so I was looking for hemi-paralysis. I counted his breaths while trying to calm him down, and told him to hang on until the paramedics showed up. They showed up shortly after and got him on his way within seconds (I was super impressed!). I gave the police his phone and keys and told them what happened and then realized I had blood going down the backs of my legs. In my high-adrenaline state of mind, I didn't even think of all the glass. I ended up with a few cuts and the police got glass out of my leg and patched me up pretty quickly. I then gave them my information and we were free to go. I couldn't believe I had just done that. It was all a blur and felt like seconds, even though it had been about 45 minutes. I called my mom and she told me to go home because she didn't need any more surprises that day. We got our pizza, played bingo (much to my annoyance), both won, and then went home. My day was finally over and I was still shaking from the craziness that was my day.

So a couple days went by and we started school. We were in school for all of ten days and then Irma came. As soon as I got the news that our classes had been cancelled, I packed my bags and drove home. I got to spend 10 days with my family, including my banged up dad and his ninja turtle shell. While I was there, I found out my blood results from forever before. They were all wonderful. My hemoglobin level was 12.6, which was the highest it had been in a long time. All my vitamin levels were completely normal, except for one. My vitamin D levels were incredibly low. I was told I had to go on an extreme amount of vitamin D before I could start any medication to hopefully reverse my osteoporosis. The doctor put me on a prescription version and that's what I will be taking until December.

I came back to Florida after the school was deemed safe, and it was so strange. Just like last year during Hurricane Matthew. Water was everywhere. Almost every sign around town had been torn down. Restaurants were closed. Water was everywhere. Yes, I said that twice because it was literally just standing in places it shouldn't have been. We weren't even directly hit, and we had so much damage. I can't even imagine living in a place that did get directly hit.

Since then I have started working out with my trainer again. I have taken 3 exams (which I got all A's on). I've gained 15 pounds. I've turned 26. I learned that I could still play golf at my birthday party. I've started watching Game of Thrones. I went to the Jaguars vs. Panthers pre-season game.

It's been a great time! And honestly, I didn't realize how much I was missing out on when I was feeling so crummy. It's been a long time. A very long time. And I feel good now. And it's wonderful. Beyond wonderful. I can study. I can retain information. I can hang out with friends. I can work out with no issues. And most importantly, I can eat :) 

It's just all so wonderful!

I wish I could say when the next post will be, but honestly I can't. It's hard to tell what is going to happen in the coming weeks. And I kind of like it like that. I like that life is a mystery. It's more fun that way. No matter when my next post will be, I have the topic ready. And it's an important one. Hopefully one that will inspire you. Hopefully one that will give you hope. Hopefully one that will help you better understand me as a person.

Until then!

XOXO,

Kayleigh

The following pictures date back to July 10th! It was just a lot easier to add them all here! Hope you enjoy!

 My roommate, Ashley, and I before our first day of 17th grade :)

 Cappie is ready for the eclipse!

 This is what the cart looked like after it crushed my dad!

 Seeing a very dear friend before I went back to school. I've known her since I was born and she was a very special lady. I will forever miss you TaTa.

 Socks was not pleased I was going back to Florida, so he sprawled out next to my feet all day.

 My best friend, Maddison, has been in Africa for more than two years, and I got to surprise her when she came home. She thought I had already returned to Florida after the hurricane. Thanks Mama Hall for helping me surprise her for the 3rd time in her life!

 If you watch Game of Thrones, you know this is the truth.

 Socks wanted to cuddle on our drive home from Florida.

 Lucy was also not pleased I was leaving the next day.

 Lake pics with two of my favorite people!!

The following set of pictures are from my time in Florida with my mom, aunt, and twin of a cousin!

 Lunch with three of my favorite friends!!

Farewell dinner for me at the lake with the entire family. This is my wonderful fighter of a cousin, Annslee!

So it's been a while...

Hello wonderful readers!

Yes, I know it's been a while. A long while. It's actually been over a month.
Sorry about that!

So here's why it's been so long: For the longest time, my computer wouldn't pull up a webpage. It would connect to wifi, but nothing would come up on the internet. My computer became "corrupted". Exact words of the Geek Squad representative. Meaning it had six viruses. So lots of money and time later and a complete reboot and reinstallation, my computer is finally fixed and here I am. Watching So You Think You Can Dance and typing this blog.

I guess you guys need an update. Because let me tell you, there is so much to tell.

Last time I wrote, I had only been out of the hospital for maybe two weeks. Well it has been almost two months since I broke free, which just baffles me completely. So I was continuing with the TPN and basically just hanging out. Incredibly bored. Family was in and out of Florida trying to keep me busy but it was still annoying to be tethered to a leash for 14 hours a day. Scheduling everything around the TPN.

On June 18th, I went to see Dr. Iqbal. I was very nervous and anxious about this one because it really was the moment of truth. Either I was told I could eat and was free and finished or I would have to have another surgery. As you can imagine, I was quite quiet on the two hour drive to the hospital. I went in for the CT scan and everyone in radiology was hoping I'd hear good news. Then I made the walk across the hospital to wait for the news. Whether it was good or bad, I had accepted it. I knew the news was meant to happen and that I'd get through it no matter what it was.

The doctor walked in and smiled. And honestly I didn't know if it was a good smile or a bad one. It was one of "those" smiles. It could have gone either way.

And then he opened his mouth and at first I didn't really understand what he said. It was like a whisper in my head. Its like it went way over my head and he could have said just about anything. I just completely blocked it out. It was that kind of moment.

I looked at my mom and her mouth was wide open. Almost shocked. Then I saw her smile and said, "Wait can you repeat that?" The doctor laughed and said, "To me, it looks like the scan is completely clear."

Hold up. What? How is that possible? Less than a month ago I had two build-ups of fluid and you were sorta pessimistic about having another surgery. The leak was just there.

Well apparently EVERYTHING healed itself. The pockets of fluid went away. The leak was gone. Everything he had issues with only three weeks before was completely gone. I had ample amounts of intestine left so I wouldn't have issues with short gut. And my blood work (overall) looked really great.

He told me he would put in the orders to follow-up with both my Gainesville GI and my St. Augustine GI. He also said he would contact the home health company and tell them that I only needed one more week of TPN, one more blood work follow-up, and then the nurse could take my PICC line out of my arm. He gave me permission to go back to school and he said I could go home if I wanted to. Most importantly...I COULD EAT.

Then he shook my hand and I looked at my mom again. I looked back at him and I said, "Wait, I'm done with you?" And he gave me that all-knowing smile and said the magical words. "You are done with me." And don't worry...I told him to expect a non-disclosure form in the future when I write my book (since so many of you have said I need to write one).

And then I went home and ate some tomato soup! Wow was it delicious. I know it isn't the most glamorous first food to eat, but trust me, it was exactly what I wanted. Plus I've gotta take it slow. But as of now, I've eaten a whole lotta chicken, some beef (only once so far), fruits without seeds, limited veggies, and lots of protein shakes. It's been a dream come true.

So after I had my Remicade infusion the following week, my home health nurse came over and pulled that sucker out and I was FREE AT LAST! No more leash. I've never slept so good in my life. You never realize how horrible your sleep is when you are constantly hooked to something and listening for a beep at any moment. Maybe that's why I was so tired all the time. Who knows...

My mom and I packed the car the following morning and headed back to Fort Mill. We've been here for ten days and go back to Florida tomorrow. My aunt and cousin are coming to visit my mom and I in Florida for a vacation. Then I have my follow-up with my Gainesville GI next Tuesday. After that, I will come back to  Fort Mill for a few weeks and then I will return to Florida by myself (for the first time in five months!!) and be there when my new roommate moves in (who just happens to also be a Celiac...crazy coincidence, right?). Then school starts on August 31st and I will be completely back to my normal!

My, how it's been quite the journey. And I want to thank everyone for everything. To the people in Fort Mill who donated money to my family. To the people who cooked dinner for my family. To the substitutes and my mom's school friends who covered for her at school. To the family that called all the time. To the people who wrote me and sent me gifts and cards. To the people who prayed and prayed hard. And to all of you reading this right now. I wouldn't be here if it weren't for you. Really and truly. I appreciate you so very much.

And don't think this is the end of the blog. I started this to update everyone, and just because everything is almost back to normal, doesn't mean I won't update you. I would like to think that this blog will turn into a lifestyle blog so that I can reach even more people, but we shall see. The end goal is to write a book, but let me graduate grad school first and get a job. Then I will have even more to write about.

Last but not least...my final total.
Days on TPN: 141
Days without food: 143
WHOA. That's almost five full months!

Love you guys with all my heart!

XOXO,
Kayleigh

Long Time No See!

Hello my wonderful followers!

As my grandmother just told me, apparently some of you have been on pins and needles waiting for an update, so I am finally here to hopefully un-pin and un-needle you. And yes, it really is me this time! Kayleigh, I mean! Thank you to my mom for keeping everyone updated while I was unable to, but I'm back and ready for action!

So I guess I should start with a few weeks ago, right after my mom updated everyone.

After that post, I was sent to the surgical floor again to join all my favorite nurses. After one night on that floor, the doctors discharged me. Before they let me go, I had meetings with a ton of home health people and case workers to prepare me to go home. Then they decided to finish my antibiotics and then give me my Remicade infusion because I was already a few days late. They finished it off with one more antibiotic and then I flew the coop. I ran out of there as quickly as possible, said peace out to all my nurses and PCAs from along the way, and got in the car for the two hour drive home. After we got home, my home health nurse came to hook me up to my nightly TPN and then I went to bed. Not much happened that night. This was two weeks ago today.

For the next week, my mom stayed with me to try and keep me busy. I had to be constantly hooked up to an antibiotic. It looked like a squeeze lemon juice container. It was run by negative pressure and I wore it like a leash for a full week. Then at 6pm every night I would hook up to another antibiotic for an hour. Then the TPN at night. It was quite the week. I also still had the drain on my right hip. After the week was almost up, we realized the drain was leaking out the sides on my skin. We called the doctor, and they scheduled a CT scan and appointment for the next morning. We went and I had two CTs done (because the doctor ordered the wrong one the first time). The CT came back and showed there was no fluid in the cavity that the drain was in. Which means it did its job. So they removed it and I had no more drains! Yay for being able to sleep on my sides! It really is the best. The CT also showed that I had two smaller cavities of fluid. The doctor was optimistic that they would be absorbed by themselves so he said we would scan again later and see what happens. The CT also showed that the leak they found in my sigmoid colon was closing up on its own. The doctor was not very convinced that it would do it on its own when I was in the hospital. The problem with this leak is that if it doesn't heal on its own, I will have to have another surgery. In the grand scheme of things, it would be a minor surgery, but let's be real, anything can happen when Kayleigh Quinn is involved. So we are really hoping it closes on its own.

Other than that surprise doctor's appointment, my mom tried to get me out of the house by going to the library, shopping for my redecorating project in my living room, and the pool. She went to the beach a few times (her second love), but I didn't think I was quite ready for that. Friends have come over a few times to watch shows with me and we went to two movies at the theater. Other than that, I have pretty much been at home most of the time. It's boring, but I can only handle so much right now and I am so afraid that I will pick up something and get sick again.

Then dad brought mamaw back and took mom home. So now we are hanging out for two weeks before my mom and the entire family comes for a little vacation.

So that's the update. I have a doctor's appointment on Monday with my St. Augustine GI doctor and then I have my follow-up/CT scan with my surgeon on June 15.

I just want to thank everyone for all the support and prayers over the last couple months. I really don't know where I would be without all the support I've gotten. The cards, the packages, the messages: It's all too much, but I love it. The fact that my blog was viewed over two thousand times proves that I have a lot of people that love and care about me and I thank everyone for that!

Much love to you guys and see you next week!
XOXO,
Kayleigh

ICU Sucks, literally

Here is the last ten days in a nutshell:

Kayleigh got to go back to St. Augustine. The drive was uneventful.
Kayleigh met her new home nurse, Jan.
Jan taught Kayleigh how to hook up all the new antibiotics.
Kayleigh started getting a headache and began running a fever around 11p.m.
Terrible night! Jan returns and is concerned about the fevers. Calls doctor.
Doctor sends Kayleigh back to Shands Hospital.
Kayleigh goes to satellite ER and gets to ride in an ambulance to main hospital.
We are in main ER until 3:30a.m., then go to ICU until next evening.
Kayleigh spends one night on the 5th floor and runs fevers.
SWAT (Rapid Response Team) comes to evaluate Kayleigh.
Shortly after, Kayleigh begins to throw up blood.
She is transferred back to ICU where things happen very quickly.
She is intubated and prepared for a procedure to find where the blood is coming from.
Doctors perform an endoscope and empty her stomach of blood.
There is so much blood the doctors cannot find the source of the bleeding.
Kayleigh is in critical condition.
Mom and grandmother are not allowed to stay over night.
The next morning the doctors repeat the procedure and find the source of the blood in the upper intestine.
The actively bleeding ulcer is catheterized.
She uses sign language and writes notes to communicate. I have to brush up on my signing skills.
Doctors will keep a close eye on blood counts to make sure bleeding has stopped.
Kayleigh has received 7 units of blood.
Happy Mother's Day!
She remains intubated throughout the day until around 6:30p.m.
The NG tube is inserted to drain fluid off her stomach and a CT scan is performed.
Her lungs have a little fluid but look considerably good.
The original abscess has shrunk but still quite large. Temps are still high.
Kayleigh is packed in ice when her temp goes up. She shivers and it is very difficult to watch.
She begs to be covered up but we can't help her.
The next day the NG tube is clamped to see if she can tolerate it being off but it is still draining a lot so it is turned back on.
Her power picc line is removed. It is not working anymore and could be a source of infection.
An ectogram is performed on her heart. Still pumping strong. Looks good.
Foley taken out.
She is encouraged to move around once PT comes and gives her the "okay".
Next day, PT comes and gets her into a chair. There are a lot of wires and tubes!!!!
Fevers still ongoing when Tylenol wears out.
Kayleigh has not asked for pain medicine or nausea medicine. She's a trooper!

5/16/17
Kayleigh is still in ICU but she has been downgraded from Critical Care to Moderate Care which basically means she is sharing a nurse with another patient (before, she had her own nurse 24/7). She is getting closer to moving back to the surgical/colorectal floor. It is believed that the fevers remain due to the abscess that remains in her abdomen. She does not have surgical pain any more. Most of her pain is from the drain and the central line in her neck.

Kayleigh has been poked, prodded, pulled, pushed and sucked. When she was intubated, she wrote me a note that said, "There's no shame in ICU."  She wants to get well so badly but has been very frustrated these last few days. Hopefully she will be able to return to the 5th floor and that fighting spirit will return as well!

Friday (Not So) Fun Day

It has been a busy few days. If it weren't for the whiteboard on the wall, we wouldn't know what day of the week it is. Usually Kayleigh is blogging about her favorite things. Not so much this week. She's a tough cookie though, and determined to get over this hump.

Since the last blog it has been crazy. On Monday the doctors ordered a CT scan with contrast. Kayleigh's belly has swollen an incredible amount and they wanted to see what was going on. While she was sedated, the radiologist doctor inserted a long needle in the pockets of fluid to extract as much as they could. Two drains were inserted, one on the left near the fistula site (the sigmoid colon), and one on the left near the resection site (near the ileum). The results showed an enormous amount of fluid build-up that appears to have infection in it. They drained almost two liters of fluid (think about a 2 liter bottle of soda). The right drain was pulling infected fluid. Without going into gory details, you could tell by the color. A chemical was inserted to break up any thick parts. Both drains flowed non-stop. The left drain had clear liquid in it. It did not have infection like the right side.

Kayleigh begins to get relief from the pressure of the fluid on her lungs. It was causing a shortness of breath. She is sore, though, where the drains were inserted. They both have a stitch holding them in place and every time she moves it "pulls" her skin.

May 4th, day ten, Kayleigh is down about ten pounds from when the drains were put in. This is all from the fluid. The swelling is going down on her legs and belly. Another scan is ordered to make sure she doesn't need more drains in areas where the fluid still remains. White blood count is still normal. Fluid from the right drain becomes more greenish/brown. Kayleigh eats for the first time in almost three months. She eats an Udi's gluten-free blueberry muffin. She is timid at first but eats the entire muffin! She works with a PT on climbing stairs since she lives in a 3rd floor apartment. She is anxious but is excited about going home soon!

Dr. Iqbal, the surgeon, and Dr. Geoff, resident on the hall, come for a visit. We are anticipating a discharge when we see the happy look on their faces, then Dr. Iqbal walks around the bed and looks at the fluid coming from the right drain.  It is a dark brownish/green color indicating that it is bile. Bile should not be in the abdominal cavity and Dr. Iqbal's expression changes from happy to grim. He shares with Kayleigh that he suspects a leak even though the first and second scan did not show signs of a leak. He orders a third scan to be done that evening. We are devastated to say the least. The doctor explains some scenarios. There could be a leak that did not show on the scans. There could have been a leak in the beginning that closed up, and before closing, it leaked bowel fluid into her abdomen. During the surgery, some fluid may have gotten in the abdomen and this is a result of an abscess putting off fluid. If it is a leak, and surgery is needed, Dr. Iqbal said that the surgery would not be performed for three months. Wow. Thinking ahead, three months is when Kayleigh would be when she wanted to continue grad school at the University of St. Augustine. Three months is when the new school year starts for me. We were in shock.

The doctors left and it took a while for either of us to speak. When we did, the water works began. I asked the nurse if she could ask Dr. Geoff to come back to answer questions. Dr. Geoff showed us the scans and explained in layman's terms what was going to happen in the next few days. First, another scan would be taken to rule out a leak. Let's get through that first. If there's no leak, then there's no surgery.  All the other stuff should be put on the back burner until we cross that bridge. So, we put our big girl panties on, grabbed a wheel chair from the hallway and got the heck out of dodge. Well, not really, but we did go on a walk to the North Tower where the Children's Hospital is located. The nurse called us about an hour later to tell us the Gatorade contrast was ready, so we returned with a clearer conscious. The scan was performed around 10:45 PM.

The scan results came back early on May 5th. There is still no sign of a leak. The bile probably came from a leak following the surgery, then the leak closed as her body healed. The leaking bile caused the abscess causing the infected fluid. The plan is to keep the antibiotics going to kill the bacteria. She will have to insert the antibiotics into her port rather than by mouth because we found that she is not absorbing enough of the pills to do any good. She will probably keep the right drain for a while, the left drain will most likely come out during her follow up appointment with Dr. Iqbal.

Kayleigh's red blood count has been low so she had a transfusion with two units of blood today. Her blood type is A-. Chris and I both have A+ blood. Fun fact, a person with negative blood can receive both positive or negative blood. A person with positive blood can only receive positive.  Having two parents with + blood gave Kayleigh only a 6.25% chance of having negative blood. She ate baked chicken and mashed potatoes for lunch but regretted eating later on because of the pain. It will take time for her belly to get used to eating again. In time, she can eat whatever her heart desires. Meanwhile, she will be on TPN (nutrition) until her body starts absorbing enough calories and nutrients to keep her healthy.

I didn't finish the blog in time to publish it on Friday because Mamaw Connie and Kayleigh's dad came down from Fort Mill and interrupted the process. I did want to share what we found out this morning. The doctors are going to monitor Kayleigh while she goes back on the IV antibiotics to see if the white blood goes down. If it does, she will learn how to care for the drains and find out her future schedule of scans and doctor visits. We are looking to leave the hospital on Monday to head back to St. Augustine where she'll be set up for her rehabilitation. Baby steps.

Kayleigh would love to hear from you whether she's met you or not. She loves to hear other people's stories as much as she loves sharing her own.

We plan to include many of her caretakers' names in the next blog because they mean so much to us! Stay tuned!

Slow and Steady Wins the Race

Momma Kati here again with the latest update on Kayleigh. It's been a long week for sure! On Tuesday, Kayleigh was doing well considering what her body had been through, not just with the surgery but the last ten years. Thanks to finding some awesome caregivers, she was as prepared as she could be for this surgery....however, Thursday proved to be a different story all together. Kayleigh became very sore, swollen, tired, dizzy, and she suffered from some pretty awful headaches and double vision. Her blood pressure was consistently low and her heart rate was high. Three different times she had stat emergencies where the charge nurse, doctors and other floor nurses were  in her room monitoring her. There was even a threat to put her in ICU.  She was not in a state of cooperation. It was very frustrating and difficult for everyone who was watching see her suffer. We all wanted this to be the "miracle" she needed to feel better but she was sliding into a very dark place instead.

When her dad left Gainesville on Thursday morning to go back to Fort Mill things were looking promising, but by the time my parents got here that evening, she had taken a step backwards. The doctors changed some meds around a few times and kept promising us that her bloodwork looked good but it was hard to stay focused on the light at the end of the tunnel, especially for me. If you started reading this blog from the beginning, you know that Kayleigh had surgery when she was 14. She was very malnourished and the re-sectioning leaked and became abscessed. She was a very sick little girl. The memories of that 7 week nightmare were coming back with a vengeance. I knew I had to straighten up and become the strength she needed to get through this. I went on a walk around the University of Florida campus, had a good cry and came back with a refreshed outlook. Kayleigh needed to be surrounded by positivity so I forced myself to have an attitude adjustment. Enough about me though, this blog is about Kayleigh's adventures.......

Saturday night Kayleigh had a new nurse named Jenn. Jenn came into her room and the first thing she noticed was the room was hot. We knew the room was hot but figured it was because it was in the 90s outside. Kayleigh was miserable and complained to anyone who would listen. I was constantly going to the kitchen to make ice packs with medical gloves to put on her head and behind her neck. Jenn called maintenance and within 30 minutes it was 65 degrees inside the room. She also finally started getting some relief from the headaches with Fioricet.  I decided Saturday night that "Slow and Steady Wins the Race" would be our new motto.

On Sunday morning the doctors came for a visit. Kayleigh's bloodwork still looked good and her temperature was normal. Both would indicate infection if the numbers were off. She also had a pretty good night of sleep despite all the normal hospital interruptions. Dr. Brad decided to take the wound vac off and the extra IV site was taken out. This meant that during the day she would not have any leads connected to her!!!! She would still be on TPN at night through her port.

The incision site looks really good. The surgeon cut through an old scar, so she does not have any extra battle wounds. She also worked with a PT today. He walked her around the hall and they talked "Therapy Talk". He was a cheerleader for the University of Florida and coincidentally, has a sister who teaches in the Fort Mill School District where I teach. What a small world!
Her day nurse, Tonya, found out Kayleigh has Celiac Disease. Her 6 year old daughter was just diagnosed Friday and she had a lot of questions. Kayleigh hooked her up with a couple great apps and this blog, so if you are reading this Tonya, "Welcome, and good luck with your daughter!" Even in the hospital, my child is helping others.

I decided to stay another week and my mom, Mamaw Connie, will come back down next weekend to relieve me. Hopefully, they'll kick us out of this place mid week. Kayleigh is very thankful for all your thoughts and prayers. We all know that this adventure is all apart of God's plan for her. We have learned that His plan involves patience and trust, something we did not  have in the beginning of the week. My cousin, Leigh Anne, reminded me that "if we stay in an attitude of faith and victory, God has promised to turn any emotional winds around. He'll use them to our advantage, and we will come out better than we would have if this had not happened to us at all." Slow and Steady Wins the Race my friends. Until we meet again......

Post Surgery Update

Hi all! This is Momma Kati reporting post surgery updates.

Yesterday, Kayleigh had to be at Shands Hospital in Gainesville at 12:15 for pre-op. After 3 sticks the nurse was able to start an IV. The anesthesia person told her as soon as they put her to sleep another IV would be started, probably through her neck. An epidural was also started in her thoracic spine at T7. This would help with pain control after the surgery. She was taken to the OR around 3:30. The surgeon came to talk to me and her dad at 6:40 pm. Some of the surgery was done lapriscopically and he had to open a previous lateral scar on her belly as well. The lateral incision has a wound vac attached to it. A wound vac allows the incision to heal from the inside out. This helps when patients are not particularly healthy and the tissue is not able to heal properly.  The wound vac should be removed before she goes home.

The scar tissue around her ileum (where the small and large intestine meet),which was causing the blockage, was removed and put back together and the fistula that connected the sigmoid colon (left side) and the lower colon was removed and repaired. He said she had plenty intestines left so Short Gut Syndrome should not be an issue. Short Gut Syndrome is when you do not have enough of a digestive tract to properly feed your body with nutrition so you have to spend the rest of your life connected to an IV bag to give you the proper nutrients to survive. Kayleigh has shared her experience with this kind of therapy in past blogs. She has been on TPN for over 80 days leading up to the surgery.

The doctor expressed that this was a very difficult surgery, as he knew it would be. He is very concerned about the distended small intestines. When the intestines are swollen like that for an extended amount of time, sometimes they do not shrink back to their normal size making it difficult to digest food properly. Only time will tell if the swelling will go down.  He was able to give us the great news that she did not have to get an ostomy bag. The first thing she asked me when she woke up in PACU after the surgery was "Do I have a bag?" I was so happy to say "No", because I knew this was a concern of hers.

She was put in a patient room late in the evening. It was excruciating seeing her in so much pain. The anesthesia doctor explained that the epidural was probably not covering the area where the fistula was removed since it was lower in the bowel. More pain meds and nausea meds were ordered. It was not until after 2 am that she was finally able to rest.

Life in a hospital is not quiet though. She was bothered with all kinds of "help" through the night. However, the sun came up the next morning with the promise of better days ahead. Her NG tube was removed in the morning hours. This is the tube that sucks the fluid out of your stomach through your nose. She hates them with a passion! Then, the IV in her neck was taken out. It was causing her neck to ache so that was another small blessing! A little while later the catheter was removed. We have always seen these small blessings as our sign that she was getting closer to going home. She was able to move to the chair and sat there for almost an hour before going back to the bed for a nap.

This afternoon the nurses have made a really big deal about her blood pressure. She has very low blood pressure. Very, very low. It's normal for her. Her heart rate is usually high. These factors put the nurses in a tizzy. Finally though, she got to go on a walk around the east wing. After the walk the epidural was disconnected. Now she will take pain meds through the IV and by mouth. She is feeling the pain a lot more now. Hopefully the pain can be controlled so she can get some rest tonight. She will start a bag of TPN tonight, so still no food or drink.

 As I write this blog she is preparing to watch Pretty Little Liars. She has been looking forward to seeing it. I am very thankful for all her friends and family who have followed her through this journey. You are our strength. She couldn't do this without you. Stay tuned as we continue updates. Hopefully, she will be up to writing the next blog post....until then, keep her in your prayers and PEACE OUT from room 5210!

My Missed Friday Favorites: Round 9!

Hello everyone!

Guys...it's almost time. It's so close that I can smell the antiseptic of the OR.

Or maybe that's just the smell of my kitchen. Since I just deep cleaned it. Who knows.

Regardless of what I smell, surgery is in 3 DAYS!!

Let me repeat that...SURGERY IS IN 3 DAYS!

Trust when I say I'm so ready for it. Beyond ready for it. As it gets closer and closer and my countdown gets lower and lower, my anxiety is climbing higher and higher. It comes with the territory. Let's be real. I don't have the best track record when it comes to my surgery experiences. But I am convinced that this is going to go perfectly (I will allow the minorest of setbacks if I must). I'm so optimistic about it, that I think it might confuse people. I'm not naïve about the fact that something could potentially go wrong. But something can go wrong with any surgery or recovery. I'm just hoping that this time goes a lot more smoothly than the last. My attitude towards it is optimistic but also very real. Which I think prepares me even more. That sixth chance is coming and it's coming very quickly.

This week I am dedicating my blog post to all the things I've missed throughout the last 90 days! I've realized over this time how much I took for granted and how much you all probably take for granted too. These things that I have missed are things I never really thought about until I had to watch them. A lot of them are simple things. Many of them have made me mentally stronger. Obviously I wish none of this had happened, but I know it's what I needed to do, and I know it will all be for the best once this surgery is over.

So here they are...

1. Being able to shower without having to cover up my port.
Every time I shower, I have to use a sheet of plastic with adhesive around the edges to protect the port from getting wet. I was told I could get it wet but could not submerge the area in water (so basically no pool, bath, hot tub, ocean, etc.) I found that the tape/adhesive around the actual port would ravel at the edges and start to come off if I got it wet, so I started to completely cover it up. This thing is 9inX9in so it's rather large. It reaches from my neck all the way down to my diaphragm. Then from my right armpit all the way past my sternum in the middle of my chest. Not only does it cause a bright red outline on my skin when I take it off, but it is difficult to lift my arms above my head to wash my hair. I've had to adjust the way I shower to meet my situation. Thank goodness I'm an OT student!
2. Being able to drink as much water as I want.
Because I am only supposed to have about 8oz of water per day, mainly to take my medicine at night, I have struggled with not drinking water throughout the day. My TPN has fluids in it to keep me hydrated, but I find that towards the end of the day, all I want to do is drink a large glass of ice water. The other reason I'd like to drink water is because of my workouts. I can only sip. So my mouth gets so dry when I work out. But I sip when I absolutely need to and just try to ignore it after my workouts. Normally I would down an entire water bottle after my workouts. Every time I talk to my health coach, she reminds me about how important it is to drink lots of water. So I got really good at drinking enough throughout the day. Now I'm going to have to train myself to drink enough again.
3. Being able to go out past 6pm.
I have a carrying case for my TPN and pump if I wanted to go out once I have plugged in, but that bag is super heavy and who wants to walk around with that all night. So I haven't left the house once since this all started when I am plugged in. It makes my life easier and probably everyone else's too.
4. Being able to sleep in.
Don't get me wrong. I can sleep as much as I want. But I have to get up relatively early to unplug every morning. And once I am up, I usually find it hard to go back to sleep.
5. Being able to walk around wherever I want once I'm plugged in.
I'm basically on a leash once I plug in at night. So it is hard to move around even my own apartment because I either have to carry the bag around with me (because the stand is absolutely useless) or I have to hope that the tube is long enough for me to go where I need to go.
6. Being able to carry my crossbody bag on my right shoulder.
Also sitting in the passenger's seat of a car. My port is on the right side. So anything that can hang from that side irritates it after a while, so I try to avoid it. The seatbelt on the passenger's side goes right across your right shoulder, therefore laying right on top of the port. I am right handed, so I naturally hang my crossbody bag over my right shoulder to hang on my left hip. So it also lays on top of the port.
7. Being able to do overhead exercises at the gym.
In the beginning, I had to avoid pushing, pulling, and anything overhead, which was a little limiting. I gradually started to reintroduce the pushing and pulling movements with success. But I haven't been able to do anything overhead because of the port. One of my favorite stretches are pass throughs. You hold a PVC pipe above your head and keep going down the body until it reaches your butt. It stretches your shoulder muscles and really opens you up. Once I can do things overhead, I will have a world of possibilities.
8. Not having to drive to Gainesville almost every week.
That trip is incredibly boring. It's all back roads. It's only 57 miles from St. Augustine, but those roads are 45 mph then 60 then 50 then 30 then 65. It's ridiculous. Plus when you are by yourself, it's even more boring. Which is the main reason I started bring Nicholas Sparks along with me in the form of an audio book.
9. Being able to wear any of my clothes.
For the most part, I wear whatever I want.  When I go into public, I usually try to cover up my port so that there are less questions and less explanations. Because the bandage covering is so high up, even t-shirts don't completely cover it up. If I'm with people I know well, I wear whatever because they already know why I have the port. I even had to buy a new bathing suit because you can still get that area around the port sunburnt because it is see-through.
10. Being able to go in public without wiping everything down and sometimes wearing a mask.
Everything has to be wiped down. Even people's hands if they hug me or touch me. It will be nice to not have to ask people to wash their hands every time they come near me.
11. Not having to deal with medical tape.
Enough said.
12. Being able to go to school.
All my friends that go to school with me are saying "I wouldn't miss it," in their heads right now. But let me tell you...it's weird when you can't go to school or work or anything like that. I enjoy school because I'm so interested in it. I miss seeing my friends. I miss having casual conversations in person and not over the phone or a text. I don't really miss all the studying, but I miss school a lot because it is leading me to the career of my dreams.
13. And the obvious...FOOD.
Ohmygosh how I miss food. I've always been a snacker. That's probably not going to be the case after not eating for 80+ days. It's so weird to think about the fact that I haven't had one piece of food in my mouth for almost three months. I feel like I've forgotten how things taste. The other day I was helping a friend make deviled eggs, which are one of my favorites, and she doesn't like the egg yolk part. She mixed everything up and then didn't want to taste it to make sure it had enough flavor. And obviously I couldn't taste it. It was beyond hard. What I wouldn't give to have a taco or a big bowl of spaghetti and meat sauce. I'd even go for a big loaded salad or a strawberry for pete's sake. I mean really...it's been the hardest part. One of the biggest worries about my recovery is refeeding syndrome. And yes that is a real thing. Basically your body rejects food and causes your body to act strangely when you reintroduce foods to your diet. Needless to say, it's going to be a long process. People have asked me what my first meal will be. I always smile and say chicken broth and a cup of juice. Think about it. I can't just start eating steak again the first day after my surgery. That won't come until a few weeks after surgery. But regardless of how long it takes, I will be patient. I have been patient up until now. May as well keep up that attitude all the way to the end.

Weekly Tally:
Days on TPN and lipids- 74
Days with no food- 79

As if you needed another reminder...

Countdown to Surgery:
3 DAYS!!!

On Monday or Tuesday next week, I will have my mom update the blog on how everything went. If you are lucky, it might be me updating it. Fingers crossed!

Hope everyone has a wonderful weekend! And thank you in advance for all the thoughts and prayers you guys are sending my way today, this weekend, and definitely Monday!

I will see you when I see you! Love you guys!

XOXO,

Kayleigh

Friday Favorites: Round 8!

Hello lovelies!

Hope everyone has had a wonderful week!

So once again, not much of a health update. I had my pre-op appointment on Thursday, and they went over how they would be doing everything and what could happen afterwards in regards to complications. They said if everything goes as planned (fingers crossed) then I could be out within five days. Of course me being a realist, I'm not going to hold my breath, but just hope that will be the case. Most of the complications have a small chance, but anything is possible with me, especially after my last set of surgeries. The complications they described mainly involved active Crohn's, which they say I don't currently have, but we shall see what happens very soon!

In other news, I only have to be plugged in for 12 hours now so I am going to have so much time to do so many activities next week! It's going to be strange to have so much time unplugged!

Let's get to this week's favorites!

My Mommy

So I've been talking about this for weeks, but she finally came! For her Christmas present this past year, I bought her a round trip ticket to come and visit me during her spring break. Originally I was going to be in school when she was here (during the week before finals...eek!), but obviously that changed pretty early on in the semester. So we were basically together every minute of this week, which is exactly what I think we both needed. We had a wonderful time and did so much throughout the week!

On Sunday, we went to an Arts Festival at the fairgrounds in St. Auggie. It was basically a ton of different artists displaying and selling their work. There was jewelry, paintings, photographs, furniture, and even some crazy weird stuff. We had a great time just walking around and admiring or making fun of all the art that was there. Then we went to the library to pick up some movies to watch throughout the week. We ended the day at the movie theater seeing Beauty and the Beast because mom had never seen it, and I (of course) didn't mind seeing it again.

On Monday, we drove up to the St. John's Town Center. This place is basically like an outdoor mall. Not like an outlet mall where everything is at outlet prices and connected, but all the stores are open to the outside instead of crammed into a mall. We spent all day there and then came home to work on our puzzle for the week and watch Dancing with the Stars.

On Tuesday, I got my haircut (agh it's all gone) and then went to the beach, my mom's happy place. We spent the entire afternoon there and then went home to work on the puzzle again and watch a movie.

On Wednesday, we went to the gym together and worked out with my personal trainer. More on that later. We then changed and went to the Old Trolley tour in downtown St. Auggie. You ride the trolley through downtown while the tour guide speaks over the intercom and tells you the history of the city. You can get on and off the trolley at any of the stops and get back on at any of the orange signs. We stopped when we got to the shops and meandered through the streets to see what kind of crazy stuff we could find (trust me...we found a lot).  We ended that stop with a sno-cone and sat on the benches and enjoyed the cold ice, since it was a tad bit warm that day. We then hopped back on the trolley and stopped at the fort next. We went in and met up with some special visitors (more on that later too) and toured the entire fort before we got back on the trolley and headed back to our car on the second stop.

On Thursday, we went to Gainesville and went to my pre-anesthesia and pre-op appointments. That was basically it.

On Friday, we went back to the gym and then headed to the beach again. We stayed all afternoon and then made our way back home to try and finish the puzzle (didn't happen...but you should see this thing...it's so difficult!). Now I type this as we watch Moana.

Tomorrow she will go back home. I'm in denial. I told her she could move in with me and just skype her classes at school. But she will be back in a week for my surgery, so it won't be that long, just not the circumstance I wish we had.

 Our puzzle. Fits me perfectly, doesn't it!

 Cute little street with all the shops and restaurants on it in downtown St. Auggie.

 Flagler College

This guy was playing the didgeridoo in the shops street while his dog sat next to him. When the dog panted, it looked like he was bobbing his head to the music. 

 Oldest tree in St. Auggie.

Transformation Tuesday

So if you know anything about me, you know I am so very pale. Like translucent pale. I burn so easily and then get paler, if that's even possible. I decided to find something to use as a self-tanner. I never have been able to find anything that doesn't streak or turn me bright orange, so I was on the hunt. We asked a few people and then I found some foam tanner at Ulta (oh that magical place). I bought the foam, an applicator mitt, and some tanning wipes for my face. I did it two nights this week and it looks great! It looks natural, and it is so easy to apply. Needless to say, I don't look so sickly anymore, which is great!

I also got that haircut this week. I've been wanting to cut it for a while, but I also wanted to wait until I got home to Fort Mill because I have a hard time trusting just anyone with my hair. I'm not a big fan of change. Any kind of change. I always go to the salon with a great idea and then chicken out at the last second and only get like an inch cut off. Well this time, I did it. I wanted it to be close to my shoulders, but also long enough for ponytails and such. So I had her cut about six inches off, which was terrifying for me, especially when she just started out with a blanket cut across before she shampooed it. Looking at all the hair on the floor really freaked me out. When she was done though, it looked amazing.

 Before

 Before

 After

After

After

My Workout

Yes, I've talked about it so many times. But let's be real...it's one of my favorite parts of the week. I look forward to it, and I never would have said that before this year. This week my trainer, Amanda, let my mom join in. I didn't realize what an influence she would be on me, but man, she was. My mom and I are on different levels. We have different strengths when it comes to the gym. Different weights for different moves. But it all evens itself out. It's almost like I took her an a challenger. I wanted to prove myself, so I stepped up my game a little bit. I tried to keep up with her speed-wise. Which maybe didn't work to my advantage since my trainer now knows I can go faster on certain moves. Regardless of the challenge, I also feel so much stronger, so I knew I could push myself farther than I normally do. One thing I hate though is push-ups. I've never liked them. They are like my kryptonite. I can do pretty much everything she asks me to do, but then we get to push-ups and I completely fall apart. So I told Amanda I would put memes and gifs up to represent how I felt today so here it is.

Me going to the gym. Ready to sweat and work hard.

Me doing said push-ups. Four times through to be exact.

But then I do this once they are all done and I don't have to do anymore.

My mom and trainer after the workout.

Amanda's reaction next week when I tell her how sore I was.

Hehe, love you Amanda!

My Girls

The summer after my freshman year I got a job with the Deer family as their nanny. I traveled with them to a ton of different places, and we had so many fun adventures in my time with them. I started with them when Olivia had just finished kindergarten and Maggie had just finished second grade. I ended up staying with the family for five summers, which was the longest I had ever stayed with one family (I was a nanny for four years before I started with them). I watched them grow up, and I'd like to say that I had something to do with how amazing they are. They were like a mixture of my own kids (if I had them) and my little sisters. To this day, I make sure to keep in touch and see them when I have breaks from school. I found out a couple months ago that they would be coming to Amelia Island for their spring break with my neighbors at home (which happens to be the family of Maggie's best friend and my mini me). Amelia Island is only about an hour away from me, so I asked them if they would come to St. Augustine, and they did! I obviously haven't seen them since December so it was great to see them. They tackled me, which is what they always do, on the steps of the fort. We then caught up while walking around and learning about the fort's history. We obviously took a lot of pictures, and my mom caught a few candids that I absolutely love and had no idea she was taking. Seeing them was exactly what I needed. It only added to the happiness and joy I felt with having my mom here. They are part of my family, and I can't wait to see them grow up even more than they already have.

And that's all folks! It's been a great week. Exactly what I needed before my surgery. Which reminds me...we are TWO HANDS away from my surgery. That's 10 DAYS people! This is not a drill! Agh I know it's probably weird that I am so ready for this surgery, but I know deep down that this is going to be successful and then I can get back to my life! I'm ready to feel better, and I'm ready to be me again. Well my more normal me.

Weekly Tally:

Days on TPN and lipids- 67
Days with no food- 72

And if you needed another reminder...

Countdown to Surgery:
10 DAYS!!!

See you guys next Friday! Have a great weekend!

XOXO,

Kayleigh