Friday Favorites!

Hello readers!

So a quick little update first and then I will get to something new that I will do every Friday!

Everything is going great! I have started regularly with my home health nurse, and she is great! She comes and does bloodwork and dressing changes every Monday. She says the site looks great and fingers crossed it stays that way until I don't need it anymore!

I haven't been gaining much weight unfortunately. I have been gaining a few ounces here and there but nothing substantial. The pharmacist that makes my TPN and lipids bags is going to speak to my referring doctor and in-house dietician to come up with a better plan, which probably means the calorie count will increase. This should help me gain more weight per week.

I've pretty much gotten into a weekly routine that works perfectly for me. I keep my phone near me at all times for doctor's phone calls (it seems like someone is trying to reach me at all hours of every day) and for my personal calendar. I immediately enter any appointment or event I have as soon as I find out about it. Then I decide if I need to start my TPN early the night before and then schedule that too. I have a routine every night starting at 6pm. I'm pretty strict with it, but that's what keeps me going. Knowing that I have everything under control (well most everything).

Monday is my appointment with my Gainesville GI doctor (the one who put me in the hospital) and the following week is the appointment with my surgeon. This is when I find out a better timeline of when the surgery could be, so let's all pray I gain some weight by then!

Weekly Tally:
Days on TPN and lipids- 21
Days with no food- 23


Alright so on to more fun things! I follow a few daily blogs that do something called Friday Favorites every single Friday. They name 6 things they are loving that week and explain why. So from now on, I'm going to start doing this!

Here we go!

Two very special friends:

Jade and Sarah

These two people have been amazing throughout this whole experience. I could not have asked for two better friends. I obviously have a bunch of people who are supporting me down here, but these two have gone above and beyond. I could never thank them enough times for all they've done for me!

First: Jade. She has been my roommate since I moved down here so for about a year and a half. She has been incredibly supportive and knows exactly what makes me tick. She has life chats with me when I need it, makes me feel more normal by asking for help with school assignments, and she has a great sense of humor.  I'm more of the talkative one and like to goof of, but we are great roommates and get along wonderfully, which is everything I could have asked for.

 This is us during a CPR and first aid class about a week after we started living together. She had to practice wrapping my head with gauze.

 This was after Jade's birthday dinner in July.

This pretty much sums up our relationship ☺

Now Sarah. I would consider her my school best friend. We laugh because we are complete opposites. I took her to see her first show in Orlando a few weeks ago. We saw Wicked, which is one of my absolute faves, and we joked that she is the Elphaba to my Glinda. But it couldn't be more true. I'm always wearing different colors to school everyday and her favorite color is black and gray (not really but that's all she wears). She is the more serious one. A lot more mellow than me. Definitely opposites if you know me at all. I'm a spaz and she is the friend that grounds me.

 This was at a meet and greet event that the second terms hosted for the first terms a while back.

 This is at my birthday dinner at one of the greatest BBQ restaurants ever.

 This is at Harry Potter World in Orlando. We are both obsessed. #nerdstatus

This was before Wicked started! Can you tell I'm excited?

Working Out

Back in September, when I started my new medications, I decided I needed to start being more physically active. I was having problems with joint and muscle pain, which is never fun. I also knew my future job would demand a lot more strength and endurance than I currently had. So I decided no time like the present and contacted a local gym, Go HQ, to get set up with a personal trainer. I consider myself one of the lucky ones because I got a wonderful trainer. Amanda has been one of the most uplifting spirits I've ever had in my life. She is a great friend, confidant, and positive force to be reckoned with. She also just happens to be a nurse, so I felt really comfortable with her right off the bat because I knew she had a better understanding of my Crohn's and other issues.

We started out slow and tested a lot of things, how much weight I could handle, how long I could handle it, and if it caused more pain or alleviated it. We got into such a great routine that you could actually see my baby biceps (that's what we called them) turn into something you could actually see. #progress

My pain stopped, I felt 100% better after each workout. My strength and endurance improved. I had more energy. I loved what I was seeing.

Then the hospital happened and I was out for about a month. When I went back, I was welcomed with open arms, and we kind of started from scratch. Now things are modified slightly because of my port, but I'm getting stronger every day and I can't wait to see what I feel like when I go in for surgery.

So big shoutout to Go HQ and Amanda for being so amazing and patient with me. I couldn't have done any of this without you and can't wait to continue!

 This is Amanda and I. What you don't know is that I was running around moments before this pretending I had a cape on so I could be a hero ☺

 I also love to walk around my neighborhood! This was the view on one of my walks!

Last Sunday, Sarah and I went to the Anastasia State Park and walked two miles on the beach. It was amazing! And yes...you should be jealous.

 So I have always had this habit of sticking my tongue out when I concentrate. This is proof that I do that. Amanda took this and we noticed it later. I have no idea that I am doing it most of the time. I even do it when I take tests at school! I have been made fun of because of it since I was a little girl!

And this is me when I came back to the gym. I had always said I wanted a before picture, so Amanda took it when I came back because I was basically starting over. Those baby biceps have already changed in the last week!

Mail

One of my most favorite things is to receive mail. I always have, but I would much rather receive a letter or card than an email or text. I mean I like them all, but there is something about a letter in the mail that makes me beam with happiness. I receive so much mail lately. Get well cards, thinking of you cards, Valentine's Day cards, and the occasional funny card (these are my favorite). They all just make me happy.

So I am providing my address for anyone that wants to send me cards. You don't have to send get well cards. Just tell me how you are doing and what is going on in your life. I love to hear from other people! If I don't know who you are, that's okay! Still tell me about yourself, and who knows, we may become pen pals!

Kayleigh Quinn

1005 Bella Vista Blvd., Apt. 301

St. Augustine, FL 32084

Hard Candy and Ice Chips

I realize that the TPN and lipids are giving me everything I need for the day. My calories, fats, carbs, vitamins, all the good stuff.  But let's be real here...I don't know what I would do without the hard candy and ice chips.

Lately, I have been getting more and more hungry. I think this is because I am becoming more active as I become more comfortable with my port. It's super annoying, but when it happens, I pop a piece of hard candy in my mouth and it usually goes away. The ice chips keep my mouth from getting super dry so those are essential too. The people at the gas station I go to get the ice chips know me now because I go in there about three times a week to pay 32 cents for a big cup of ice chips. I always have one of the two on hand at all times, so yes I am the girl fidgeting through my bag to unravel the loudest piece of plastic in the world.

Here are my faves!

TV Shows

Usually when I plug in for the night, I can't move around as much because the tubing is only so long and the bag+pole is kinda heavy. I have everything I could need near my bed and usually get a lot done on my computer. I journal, blog, read, and watch movies and my tv shows.  Lately my obsessions have been pretty simple.

Gilmore Girls

I LOVE this show. When it first premiered years ago, I watched it, but I would miss an episode here and there because back then you couldn't record shows. I'm showing my age here... Now that it's on Netflix, I can fix that problem. I've started over and have made it through three full seasons so far. I have already seen the newest episodes that came out at Thanksgiving, so I'm well aware of the anxiety attack everyone had when the last four words were spoken (my cousin and I screamed at the tv for a good ten minutes). But I figured I needed to refresh my memory. Gotta say though...still #teamJess. Always have been, always will be. Yeah he might have done some stupid stuff, but I love him and Rory together. We will see if I shall change my mind by the final season.

This Is Us

New obsession right here. This is an amazing show. It shows the real life struggles of a family and puts everything into perspective. Coincidentally, one of the main characters plays Jess in Gilmore Girls, so not only am I #teamJess but I am also #teamJack. And yes...I'm just as nervous to find out what happened to him as everyone else.

 Jess and Jack. My how he has changed!

I highly recommend both of these but I also love:

Pretty Little Liars, So You Think You Can Dance, How to Get Away With Murder (what a twist last night during the finale), Gossip Girl, One Tree Hill, Survivor (dedicated fan since I was 9), The Fosters, Young and Hungry, and Lost

Harry Potter

I grew up with these books. I started them in Ms. Gupton's second grade class and have been hooked ever since. I remember waiting to buy the last one and read it all night long just so I'd be on the same page as everyone else at school the next day. The movies came out when I was the characters same age, so those books and movies were literally my entire childhood. Sarah took me to Harry Potter world for my 25th birthday and I was in awe because it was like stepping into the movie. Yeah I'm a total nerd, but I love the meaning behind all of the gang's adventures. It should give you hope that anything can turn out great if you just believe in yourself.

I have read these books all the way through four separate times. I figured I'd have a lot of time on my hands, so I borrowed them from Sarah to reread them. Crazy thing is that I forget what happened in the books sometimes. I like the books way better (who doesn't?), but it's amazing just how different they are. I'm a big fan of book Ginny. She is just so strong and dependable, and she chose to be that way, not out of necessity, but because her friends and family needed her. It's an added bonus that she ends up with the main character. Oops major spoiler alert. But if you didn't know that by now, what have you been doing with your life?

One of my favorite quotes because if you have enough nerve, you can do anything your heart desires.

BONUS!!

Jade and I recently got a betta fish! He is gorgeous, and we are already obsessed!

Meet Finn Sebastian Lewis-Quinn!!

So that's it for this week! Join me on Tuesday, when I talk about all the cool things I have done since coming to St. Augustine!

XOXO,

Kayleigh

I'll Tell You What I Want, What I Really Really Want

You never really realize how many things in this world revolve around food. That is, until you can't have it anymore.

Let me explain. But first, two recipes that I absolutely love to make!

Breakfast! Come and get it!

Cinnamon Swirl Gluten Free Quick Bread

What You'll Need:
For the Quick Bread:
1 3/4 cups all-purpose gluten free flour (I use Pillsbury brand)
6 TBSP cornstarch
1 1/2 tsp baking powder
1/2 tsp baking soda
1/2 tsp kosher salt
3/4 granulated sugar
6 TBSP unsalted butter (at room temp)
1 cup buttermilk (at room temp)
2 eggs (beaten, at room temp)
1 tsp pure vanilla extract
For the Cinnamon Sugar Mixture:
1/2 cup granulated sugar
2 tsp ground cinnamon
For the Glaze:
1 cup confectioners' sugar
1 TBSP milk (plus more by the 1/4 tsp if necessary)


Directions:

1. Preheat oven to 350 degrees Fahrenheit.

2. Grease a 9in x 5in loaf pan and set aside (I use Pam).

3. In large bowl, mix flour, cornstarch, baking powder, baking soda, salt, and sugar.

4. Create a well in the middle of the ingredients and add buttermilk, eggs, and vanilla. Batter should be thick and fluffy.

5. In another bowl, mix granulated sugar and cinnamon.

6. Put half of the quick bread batter into the loaf pan. Spread evenly with a wet spatula.

7. Place half of the cinnamon sugar mixture on top in an even layer.

8. Place remaining batter on top, followed by the remaining cinnamon sugar mixture.

9. Using wet spatula, swirl the top layer of the batter.

10. Bake for 30 minutes.

11. Lower temp to 325 degrees, rotate pan 180 degrees, and bake another 15 minutes (If toothpick is inserted, it should come out with few crumbs).

12. Remove from oven and let cool for 15 minutes.

13. In a small bowl, mix confectioners' sugar and milk. Mix until a thick paste forms. Add milk by the 1/4 tsp as needed to get the right consistency.

14. Drizzle the glaze over the loaf in a zigzag pattern.

15. Slice and ENJOY!

I doubled this recipe and made it Christmas morning, and my family couldn't believe it was gluten free!!

Dinner is served!

Three Cheese Chicken Roll-Ups

What You'll Need:

2 TBSP vegetable oil

1 TBSP minced garlic

2 cups spinach

1/2 cup ricotta cheese

1/4 cup parmesan cheese

4 thinly sliced chicken breasts

2 eggs (beaten)

1 cup seasoned gluten free breadcrumbs (can use regular bread crumbs if you want to make it non-GF).

1 cup marinara sauce

4 slices mozzarella cheese

Salt and Pepper

The beauty of this recipe? You can use as much or as little of the ingredients as you want. I like mine to be extra cheesy so I use more cheese. I also sometimes skip the breading altogether! Do what you want to make it your own!

Directions:

1. Preheat oven to 350 degrees Fahrenheit.

2. Sauté the garlic and spinach in oil until spinach wilts.

3. Add ricotta, parmesan, salt, and pepper and mix until heated throughout.

4. Salt and pepper the chicken breasts.

5. Add cheese mixture to end of chicken and roll chicken around it (it'll look kind of like a pinwheel).

6. Dip each roll-up in the egg and then the breadcrumbs.

7. Place in a greased baking dish with the seam side down.

8. Bake for 25 minutes.

9. Remove from oven and top with marinara sauce and mozzarella.

10. Bake for another 5 minutes.

11. Remove from oven and ENJOY!

I usually make GF penne pasta to go with this, with a side of salad or broccoli. This is by far one of my favorite recipes and it is so easy to make! The leftovers are equally as good!

So now it's time to explain my opening sentence. It's been kind of a crazy two weeks.

I went to see my GI specialist in Gainesville, FL on January 30th and got a huge surprise. She was admitting me into the hospital for five days to have multiple tests done and get a port inserted so that I could start receiving TPN and lipids, which is a complete nutrition supplement given through the port.  I was being admitted the following day. She also stated I wouldn't be eating for 6-8 weeks, so to have a great last meal. And yes, I say that casually because I will come back to that.

I drove home as quickly as possible to pack and called everyone that I needed to tell immediately (my mom, my dad, my grandmother, my school best friend Sarah, and one of my role models and friends Ms. Martha). My parents told my mamaw and papaw and they started packing to come the next day to Gainesville, mainly to keep me company because it would mostly be observation and sitting around. I was starving and for some reason I was craving wings, so I ordered Buffalo Wild Wings and ate my last meal (well kind of). I came home and packed and prepped my apartment for my absence. Then I went to bed. My doctor had my cell number and she was going to text me when my room was ready so that I could be a direct admit.

The next morning I woke up and ate a peanut butter bagel and packed my car. I got a text to be there at 7pm, so I ate soup and crackers for lunch and went to Walgreens to get a lot of hard candy. Then I made my way to Sarah's house to get some books to keep me busy during my stay. I then made the two hour trip back to Gainesville, met my grandparents at their hotel, and we made our way to the hospital.

The first night was just talking to the internal medicine doctor on call and starting an IV so they could use it until I received my port. I started getting fluids and that was pretty much it for the night. The next morning was the worst. I had to get a dobhoff tube inserted (bonus points if you know what that is without me telling you ☺). It is basically a nasogastric tube. It goes down my nose and throat, through my stomach and duodenum, and ends in my jejunum, which is the second part of the small intestine. I was having an MRI with contrast later in the day, so I had to either drink four huge bottles of contrast (not gonna happen) or get the tube and get it injected straight into my digestive system (not fun either but I will survive). So I had the test done and came back to my room assuming the tube would be removed. Not the case. I had to keep it for two days "just to make sure" I didn't need it anymore. Meanwhile, I had multiple x-rays, blood tests, and other precautionary things done. Then on the third day, I received my port. Which isn't really a port. It is a power PICC or a CVL line, which is a tube that has been inserted into my internal jugular vein under my right clavicle.

I would go home with this little beauty so I had to get used to it. After more x-rays, they finally started the nutrition and I got the tube removed (thank god). This nutrition was made specially for me, based off of what I needed on a daily basis. The first day ran for 24 hours, the second day was 18 hours, and the third day was 14 hours (woohoo to 10 hours without a leash). They continued testing everything under the sun to make sure I had everything I needed in that one bag. In between all this I got to go outside the hospital and read. I LOVED this time because it was so nice outside.

Not the best view in the world, but I will take what I can get. I had to check in every hour with my nurse so they knew I hadn't flown the coop. But let's be real...I wasn't going anywhere without my stuff.  Five days turned into seven (which was okay with me, I was where I needed to be). Finally I broke free and drove home to St. Augustine. My home health nurse came and taught me everything I needed to know about my nightly feed bag and told me I had a very good outlook on everything, much better than most people. No point in being annoyed with everything. This was going to make me better.

So a few shout-outs. You never know who might read this.

Dr. Glover- I may have almost had a panic attack when she said I had to be admitted the next day, but it's what I needed. SO thank you for making that decision.

Dr. Iqbal- I can't wait to feel so much better and I truly believe this surgery will do the trick. I may have to wait a little longer, but I fully trust your judgement.

Dr. Amir- Thank you for making sure my nutrition was specially made for me. It's doctors like you that save lives every day.

Nurse Roger- You were the absolute best nurse I've ever had, and I have had a lot of nurses. Thanks for just coming to talk when you had a free minute (I'm convinced you did it to get away from your other patients for just a second ☺). I had you for four days, which is usually unheard of, and I didn't mind being there when I had you as a nurse. I loved hearing about your life while also telling you about mine. And thank you for telling everyone else that I was a great patient because I only ever called the nurses' station because my IV was beeping.

Almost Dr. Joe- This is what my grandmother and I called you all throughout my stay. You were there every single day at the same time. You'd come back with the medical team, and then you'd come back later in the day to get everything done and keep everything on schedule. I don't doubt that you will make the most amazing emergency medicine doctor in two short months. I'm glad you won the bet with your colleague about my personality and attitude. I'm happy I could prove him wrong when he thought I'd be a diva. You answered countless questions, made educated guesses and admitted when you didn't know the answer, and you were so knowledgeable, while also connecting on issues outside the hospital (like knowing sorority lingo and places that I talked about). Plus it helped that you were close to my age. I loved having you as my almost doctor!

Mamaw and Papaw- Thank you for making the long trip to Gainesville just to keep me company. Don't know what I'd do without you guys every single day!

So I'm sure your wondering what I'm doing now.

Well it's a lot of medical stuff.

1. I have to take so many meds everyday. Day and night. Including liquid meds so that it's easier on my digestive tract (it's a high-powered medicine).

2. I have blood tests and dressing changes on my power PICC once a week with a home health nurse.

3. I sleep as much as possible.

4. I log my weight and blood glucose levels three times a day.

5. I clean ALL the time. You can never disinfect enough.

6. If I go into public, I have four things in my purse. A mask, gloves (if needed), disinfectant wipes to wipe down everything I touch, and so much hand sanitizer.

My power PICC and meds cause me to have a very delicate immune system. If I get sick or if my PICC site gets infected, that can lead to bad, bad things. So I have to be extra careful. I have a sign on my front door to wash hands after entering. I don't hug anyone. I disinfect everything. It's a little obsessive I must admit. But it's gotta be done.

7. I have to "plug-in" every night at 8pm. Or at least close to it. I have a HUGE bag of fluids that I have to infuse every night while I sleep. It runs 14 hours. Five nights a week is TPN (total parenteral nutrition) and two days a week is lipids, with each being infused with many vitamins. I do it all. I prepare the fluids with syringes. I clean and flush my two leads (the two hanging parts in the picture above). I set it up and start it at 8pm. I'm hooked up all night. This stuff is a miracle drug. I'm supposed to gain weight with this stuff. This is why I'm not eating for 6-10 weeks.

How are you not eating but gaining weight? Well this stuff goes straight to my veins and provides everything you receive in a day, plus more. Normally you eat food and when it gets to the intestines, the vitamins and minerals your body needs are absorbed into the blood and distributed throughout the body. I'm bypassing the digestive part and going straight to the blood. So I know you're wondering...don't you get hungry? Well yes. Usually at the "normal eating times". I'm told it'll get better as time goes on. I mean I am going without food for 6-10 weeks (and then a little longer after surgery). But I'm also told I have the right mindset to do this. I know it's what I have to do to be healthy and to rest my gut, so I just get over it. I'm allowed to have hard candy (gluten free butterscotch, tootsie pops, blow pops, dum dums, lifesavers, and jolly ranchers), ice chips, and about 8 ounces of water per day to take medicines and to sip on when needed. Weirdly enough, I've been fine. I went to a dinner party the other night and surprisingly didn't get hungry. If I do, I start sucking on something and it usually goes away pretty quickly. I keep joking I'm going to end up with a cavity (sorry Dr. Templeton and Sineath).

Why am I doing all this? Unfortunately I am considered severely malnourished. Not because of something I did. Just my body not doing what it should be doing. If I were to have surgery tomorrow, my chances of having another surgery, ending up with an ostomy bag or infection, or relapsing completely are pretty darn high. I have to gain weight, and I have to get all my vitamin levels in check before I can have surgery. So as soon as the doctors give the signal, back to the hospital I will go. But this time for the actual surgery. Hopefully just one (knock on wood, cross your fingers, say a prayer). Then I will start a refeeding program to start eating again. And eventually I will be good as new and able to recover as quickly and efficiently as my body lets me. Then I will go back to school in September. Agh I can't wait!

So it's a little ironic that I gave you recipes at the beginning. Well, my life hasn't stopped. I still love to cook, and because I'm not actually doing it right now, at least I can write about it and plan my meals for after this is all over. Currently, I'm having a huge juicy cheeseburger with French fries on the side. Not really. But I decide what my feed bag (by the way...this is just what I call it) is every night. This week I've had fajitas and a margarita, steak and potatoes, strawberry French toast with sausage, and chicken alfredo. In reality, I'm having a cherry tootsie pop and a cup of ice chips. I'm really living the life.

But that's basically me. So now I wait, keep myself busy, go to doctors' appointments, and stick to my regimen. I'd appreciate prayers for strength and peace (as this can be extremely frustrating and boring most days). If you have questions or can suggest some activities or hobbies I can pick up, it would be much appreciated! Just add them to the comments below!

Much love and thanks for reading!

XOXO,

Kayleigh