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......
Sunday, April 30, 2017
Tuesday, April 25, 2017
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!
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!
Friday, April 21, 2017
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
3 DAYS!!!
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, April 14, 2017
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!
Days with no food- 72
10 DAYS!!!
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- 67Days 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
Friday, April 7, 2017
Friday Favorites: Round 7!
Hello lovelies!
Once again, not much of an update! Which like I said on Tuesday...I take that as a great thing! At the beginning of this week, I still wasn't feeling 100% better after the setback last week, but I had my infusion on Wednesday and that leads me to my first favorite of the week!
Once again, not much of an update! Which like I said on Tuesday...I take that as a great thing! At the beginning of this week, I still wasn't feeling 100% better after the setback last week, but I had my infusion on Wednesday and that leads me to my first favorite of the week!
Remicade
So Remicade is one of my two Crohn's medications. I receive it every six weeks through an IV (right now it is through my power picc). I'm never too thrilled that I have to sit for three hours to receive the medication when I could be doing so many other things, but my attitude changes as soon as I receive it. This medication is basically on a timer. You have to get it every six to eight weeks (in my case 6). My body (as well as Evan's because he has the same meds) knows when it is time to have the medication. It's strange how your body knows this schedule. This time, I had to get it after five weeks because of my surgery. This is an extreme immunosuppressant, and you cannot have a procedure within two weeks of the infusion. So I either had to do it two weeks before or two weeks after surgery. We picked before because it would have been nine weeks between infusions if I had waited. Well trust me when I say I'm glad I did it this week. My body has been through a lot in the past few weeks. Between shingles and the hospital, my body was already craving that medicine. I was halfway through the bag, and I already felt SO MUCH BETTER. Modern medicine. What a wonderful thing.
My Grandma
Last Sunday my grandmother came to town to "keep me entertained" as she said. She knew I needed some company down in Florida, so she flew down for the week and we did a whole lot of not much, which is exactly what I needed. We watched musicals (she's the one who introduced me to those) like An American in Paris, Mame, and Shrek the Musical. All good but I'd say my favorite of the three was Mame. Good ol Lucille Ball. You can never go wrong. We played about 5 million games of Gin. For those of you that don't play cards, Gin is scored to 100 and then you win. Well I won 5 times and she won once. So let the record show that I beat the master. And as I said, the student finally dethroned the master. We played Phase 10, Bananagrams, and Yahtzee. We sat on my patio and read. Like I said, we did a whole lot of nothing, but it was wonderful!
My Spaghetti Recipe
So some have asked so here it is. I have altered this recipe sooo many times, but this is my favorite version. I use a lot of premade ingredients because I never have a ton of time to fix it (especially when I am in school) so instead of making it from scratch, I mix a little of both.
1. Brown a pound of ground beef.
2. Mix in a jar of Prego Traditional tomato sauce.
3. Mix in about 30 pepperonis, cut into tiny pieces.
4. Let simmer for about 5 minutes.
5. Add Italian seasoning, minced garlic, salt, pepper, and sugar. The amount of each depends on your liking. I never really measure it out.
6. Let simmer for another 5 minutes.
7. Add shredded parmesan.
8. Stir together and serve on top of noodles or use in lasagna (which is one of my faves).
People love this spaghetti. It's great, and it's really good the second day or even frozen. I started using pepperoni in my sauce when I was in 8th grade, after taking Home Arts with Mrs. Winslow. People still love it and never expect it.
MY MOM IS COMING TOMORROW!!
I haven't seen her since January. Needless to say, it's time to see her. I CAN'T WAIT!
Next week I have my pre-anesthesia appointment, so Thursday my mom and I will be going to Gainesville for the day. The next two weeks are mainly for preparing for my surgery because it is SO CLOSE!
Weekly Tally:
Days on TPN and lipids- 60
Days with no food- 65
Countdown to Surgery:
17 DAYS!!!
Days on TPN and lipids- 60
Days with no food- 65
Countdown to Surgery:
17 DAYS!!!
See you guys next Friday!
Hope you have a wonderful weekend!
XOXO,
Kayleigh
Tuesday, April 4, 2017
Tuesday Themesday: March's Last Edition
Hello my favorite people!
I'm taking it as a good thing that I don't have much of an update this week! That just means nothing is really going on, which is a great thing! Especially after last week. My grandmother from Virginia is here for the week, so she is keeping me busy with card games, Bananagrams, magazines, musicals I've never even heard of, and crazy amazing stories from her past. Tonight she even let me cook for her, which is the first time I have cooked since all this started. It felt strange, but I didn't even get hungry while I was doing it, so I was happy that it wasn't torture for me. Plus I loved getting back in the kitchen since I love to cook so much! Tomorrow I have my Remicade infusion, so that will take all morning. Grandma leaves on Friday morning and then my mom flies in for her spring break on Saturday!!
Weekly Tally:
Days on TPN and lipids- 58
Days with no food- 62
Countdown to Surgery:
20 DAYS!!!
I'm taking it as a good thing that I don't have much of an update this week! That just means nothing is really going on, which is a great thing! Especially after last week. My grandmother from Virginia is here for the week, so she is keeping me busy with card games, Bananagrams, magazines, musicals I've never even heard of, and crazy amazing stories from her past. Tonight she even let me cook for her, which is the first time I have cooked since all this started. It felt strange, but I didn't even get hungry while I was doing it, so I was happy that it wasn't torture for me. Plus I loved getting back in the kitchen since I love to cook so much! Tomorrow I have my Remicade infusion, so that will take all morning. Grandma leaves on Friday morning and then my mom flies in for her spring break on Saturday!!
Weekly Tally:
Days on TPN and lipids- 58
Days with no food- 62
Countdown to Surgery:
20 DAYS!!!
Can you tell I am excited?! 😊
So for the month of April, I will not be doing any more Tuesday Themesday. I will pick it back up in May! I will still be doing updates and Friday Favorites, but with all the appointments and prepping I have to do for the next 20 days, it'll be easier to just update you once a week!
That being said, here is the last March edition (the one that was supposed to come out last week) that features cool thing I have done while in grad school.
Family Thanksgiving in St. Augustine
My first Thanksgiving in school, my family decided to come to St. Augustine. My grandparents rented a house for the family, and we enjoyed some time away from school for me and SC for my family. We did some pretty fun things!
The view from the house's balcony.
This was when the last Hunger Games movie came out, so we went as a family to see it!
View from the top of the lighthouse in St. Augustine.
The entire fam at the top of the lighthouse!
We got to go to the Alligator Farm and do the rope course and zipline course. You literally zipline over the alligators, which is kind of creepy. Evan isn't big on heights so he and the grandparents went to the actual zoo part while we ere above them.
Visits to St. Augustine
The above pictures are all from when my grandparents and mom came down to help me move last July. They had a condo on the beach that we stayed at while I was moving!
My godfather, Matt, came to St. Augustine with his family during his trip to see his parents in southern Florida. I took them to Salt Life, which is an excellent burger and seafood restaurant that was featured on Tanked. They built a huge fish tank in the shape of a wave.
My grandparents from Virginia came to visit when they were taking a 6-week tour of Florida. They stopped to see me on their way back to Virginia at the end of their trip!
For my parents' 25th anniversary, my dad got my mom a 5-day cruise vacation. On the way to the boat, they stopped in St. Auggie and we went to Salt Life (again...I really like that restaurant) and walked on the pier across the street.
On my very first trip to St. Augustine, I came down to attend my interview for grad school. My grandparents brought me down and then I flew to Virginia afterwards to attend my other grandmother's wedding. It was a crazy four days, but we were able to fit in a tour of the city on one of the trolley tours. We went to the Fountain of Youth, which is where all the peacocks hang out in the city. There are so many beautiful ones and they just hang out in the shade. We also went to the fort, which was the first one built in the country.
So that's St. Augustine! There is still so much I haven't done or seen, but I still have a lot more time here, so I will get there!
See you guys on Friday! Have a great rest of your week!
XOXO,
Kayleigh
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