Thursday, March 19, 2020

Hi, I am the immunocompromised person you are saving.

Well, kids...it has been an interesting time to be alive. That is. for. dang. sure. When COVID-19 first made the news I wasn't too worried. I thought it was only a few cases and far away! In China! I was glad that we weren't still living in Shanghai, but I thought it was contained and not very worrisome. And then it started popping up in the United States. I grew worried. I went last week to Miami where I met with my surgeon. She looked over the labs that I get every other month and noticed that my Vitamin A, E, D & Iron were low. This was frustrating because I thought that all of my levels were normal but she found some labs that were not included in my online database. Because I have short-bowel syndrome my body has a hard time absorbing nutrients from a diet a person with all of their small intestine would have. I probably only get about 1/2 the nutrients you get. My food digests in my system in about 12 hours whereas the normal person takes 24-72 hours. Don't tell me how I know this, but it involves corn and i'll just leave it at that. 

So why do I tell you this? Due to my condition, my immune system is compromised. In the past 2 years I have been hospitalized 19 times and have had about 15 surgeries/procedures. I have had pneumonia 3 times and various infections due to my body having a low level of resistance to virus's and bacteria. At my appointment I told the receptionist that I had a lingering cough. No fever and no body aches just a cough. They led me to a small tent outside of the entrance where they monitored me for 20 minutes taking my blood pressure and temperature frequently. I was surprised but it was also reassuring that they were doing what they could to prevent the spread of the virus. I asked my Doctor how she felt about the virus and if I should be worried. She looked at me and nonchalantly said, "Well for you, this would kill you." She's a peach, let me tell you. She really gives you the warm and fuzzes. 

In the news you have read that the people that are most at-risk are people that are old and those who have underlying health conditions. This is me. I am that person. I am the one that would get this virus and I would not be able to fight it. I have been in that hospital, I have been on that ventilator. I have had a 106.7 fever and I have been so depleted I could not find a reason to live. 

BUT  through through countless prayers, fasts and therapy session I have found that reason. My family. They are what is the most important and I want to be here on earth to see Samantha finally learn how to tie her shoes, I want to see Preston using complete sentences. I want to be there for my kids for every break-up, wedding and school dance they go to. 




I am the reason that you are staying at home. I am the reason why you are homeschooling your children. I am the reason why you are now forced to work on a laptop while sitting on a bed. I am the reason that you have been forced to play Candy Land for the 986 time today. You are isolating yourself because you want to save me, and I adore you for it. 

I have been able to see many beautiful things during this isolation period. A neighbor posted on the Facebook page that she would run errands for those who are compromised. Beautiful. A sunset that I enjoyed because I had to go outside to get fresh air. Beautiful. The nurses and doctors who show up to work not knowing if they will come into contact with the virus but to save people on a daily basis. Beautiful. A man in Spain was leading a rooftop jazzersize class that people could join in by looking out their windows and following along. Beautiful. People are sharing their talents by providing kids online resources for free. Beautiful. Celebrities are taping themselves reading children's books and posting them online. Beautiful. In Paris people open their windows and applaud the medical professionals for keeping them safe. Beautiful. My neighborhood is having everyone draw sidewalk chalk masterpieces so that children can go on a scavenger hunt on their walk. Beautiful. This morning I sat and played Legos with my kids because we didn't have anywhere to be. Beautiful. 


If this isolation has taught me anything it has taught me to be still. To be present with my children. To prioritize and assess the needs of my family. I encourage us to spend this time to relax. The world is becoming increasingly distracted and busy. Be still. Have a diet coke. Take a nap. Watch too much Netflix. Play that board game you haven't opened since getting it at Christmas. Bake the cake. Read the book. Do these things because you care and you want to help. And wash your hands while you're at it! 



So please, I beg you, stay home.  Protect me. Protect Grandma Sally. Protect Shannon who is fighting cancer. Protect Danny who has type 2 diabetes. Protect Gina who has a heart defects. Do it for us. Old Navy can wait.  


Saturday, September 7, 2019

Saved.


Preston recently turned 2 years old. It seems like I just gave birth to him yesterday. But on the flip side, weeks of suffering has felt like years. 


See, in a lot of ways Prestons birthday is a different kind of birthday for me as well.
That was the day that I was given another chance at life. I was bringing this baby into the world, and at the same time I was saved. Preston is perfect. He is a mellow kid. He’s flexible, he is outgoing, He is happy and he is the reason I am here today talking to you.
When doctors went in to deliver him they found that my small intestine had strangulated and they had to remove the part that was dead. That part was 90% of it. For one year I couldn’t eat anything. Not even a bite. For 20 months I had a semi-permanent IV sticking out of my chest. For 20 months I had a feeding tube that hung out of my stomach.
There have been tender mercies. There has been happiness. There has been many people who have given me life. For 2 years I have been able to find joy through my family.
For 24 months my husband has encouraged me. In the early days of my recovery he hooked up my medicine, helped me bathe and took care of our newborn son. He never left me alone to suffer. He rubbed my back as I threw up repeatedly for 5 months. He came to visit me in the hospital each day often bringing flowers, balloons, pictures the kids had drawn, an iPad with Netflix, my pillow, a hug and a kiss. He saved me.
My 5 year old daughter has run around retrieving numerous things for me, she has ran upstairs to get diapers, toys and medicine for me so I wouldn’t have to climb them. In the early months I tormented myself with worry on how my health would affect her life. I worried that she would grow up resenting time when I couldn’t get out of bed. I felt guilty for the days when I was grumpy because I was in so much pain, had nausea or was too tired to try. The other day I was laying down and she brought me a blanket and wrapped it around me. She has taught me so much about compassion. She saved me.
My 2-year-old son has brought us all hope and joy in a very dark time. We clapped and smiled when he sat up, stood, walked and talked. His progression has brought us so much delight. When I would sit in the hospital bed sick and tired, he fell asleep in my arms giving me strength and courage. He has been patient with me from the very beginning. If they wouldn’t have gone in to deliver him, they never would have seen my dying intestine. He saved me.
My parents have spent so much time in Florida taking care of my family. For months at a time they would stay and cook, clean and tend to my children. My mom would come to the hospital and brush my hair, bring me magazines and she always brought the encouragement. Many times when I was hospitalized my mom would come and take care of us. My dad would weed our yard, take my daughter fishing and to school. My in-laws provided us with support and prayers. They were here to help and feed Preston when he came home from the hospital. My sister came to visit armed with positivity. She curled my hair, fed my baby, and gave me daily pep talks. My best friend Melanie came to visit when I was discharged from the hospital. She helped me bathe, painted my daughters nails, made me chicken broth and pulled a few all nighters with newborn Preston. They saved me.
The surgeon who took on my case from the very beginning. He carefully untangled my intestine, a process that took 4 hours alone. He was careful and diligent. He was conservative and gentle with the alteration. He was thorough when explaining the surgery to my husband. He was optimistic with the process but made sure to explain everything so there were no unnecessary surprises. In my hospitalizations (18 in total) he was there by my side offering sympathy, strength and knowledge. He visited me daily, made changes to my medications, asked me how I was doing, and sat next to me while I cried many tears. He was everything you would hope a surgeon would be. When I would thank him for saving my life, he thanked me for enriching his own. He saved me again and again.
My short bowel specialist/surgeon who performed my revision surgery a year ago in Miami. She gave me hope. She is highly knowledgeable about my condition and she knew right away what needed to happen. She was the one who decided to flip my small intestine backwards to increase absorption. This procedure still blows my mind. She knew it was possible. She gave me my life back. She saved me. 
My friends. The many people that took action when I needed a tribe to succor me. The individuals who prayed for me all over the United States and across the world. After I gave birth to Preston and laid intubated in the ICU, people of faith were fasting in my behalf. They pleaded with the Lord to heal my battered body. Strangers I had never met sent me quilts, blankets, flowers and encouragement. My new friends in Florida took care of my children, brought my family meals and came to the hospital armed with nail polish, board games and gossip. Oh, how I love my friends. They saved me.


All these individuals played a big part in my recovery. But I can't stop there. The person that truly saved me was the Lord. He never left my side. He gave me comfort as I lay alone in the hospital. He was there when I had a colossal panic attack in the ICU. He was there working next to my doctors during all my procedures and surgeries. He guided me to these people who have helped me heal. Christ saved me. 
We celebrated Prestons birthday with cake and ice cream with friends. While we sang Happy birthday to him he looked up at me with a huge smile on his face. I couldn’t help but well up with tears. Two years ago we weren’t sure I’d be here for this celebration. I could’ve missed this whole experience. I am so happy I was present and have been able to see him grow. We did it, son. We’ve been saved.



Friday, January 25, 2019

Seeing Sunshine Through the Clouds


I am always so humbled at all the many people who tune in to these posts. Family, friends, acquaintances and even strangers! Whoever you are, thanks for joining! I have recently felt the need to clear things up a bit; I am not always as resilient as I look like I am here on the blog. I have moments (many) of my recovery that are dark, dreary and ugly.  Have you heard about how instagram can be everyone’s highlight reel? No one wants to see the sorrow, show me the fearlessness! There are so many things to be thankful for. (More on that later). But I do want to make it known that I don’t always feel courageous, strong and resilient.  And I say this because I want you to know that if you’re feeling weak too, it’s okay! God didn’t put us here to be unaffected by all the things we were going to experience. We were sent here to endure! Endure to the end. I’m not a scriptorian, but I am pretty sure the passage doesn’t state, “Endure with the happiest smile on our face.” Sometimes persisting can be white knuckling through the hard times. But, as someone who has done a fair share of white knuckling, I will tell you that having a positive outlook and perspective has healing properties on your condition.



When I awoke a few days after my huge emergency surgeries, my husband, Peyton, assured me repeatedly that there had been so many miracles that we had just been a part of. I sat in the hospital day after day in pain, depression and loneliness and he kept reminding me, “Cat, you are alive because of so many reasons. We should review them. Write them down!” Now, I am going to be fully honest with you, dear reader. Remember, I am here to give you honesty and not just fluff. At the time, I didn’t think anything was miraculous about my situation. There are times even today when I think to myself, why was I saved? Why did the Lord keep me around? What am I missing? These miracles help me remember the tender mercies, and it gives me hopefulness for the future.


            We moved to Florida only about 7 weeks before all of this happened. In that time I felt very strongly that I should deliver at a certain hospital. Many people at my church encouraged me to deliver at a prestigious baby hospital downtown. While we will never know for sure, if I were to have delivered there I would never have had my OBGYN who was instantly prompted to do a C-section. They wouldn’t have delivered Preston and continue to lift out my organs and look at my intestine to check for profusion. I want to make it clear that this is not a usual step in the process of a normal C-section. Had she not felt inspired, she would’ve gotten Preston out, and sewed me up, wasting precious time for my dying organ. She somehow knew to look at my intestine, and at that moment she saw that I had developed a hernia, which had strangulated my intestine, killing off the blood supply. I get goose bumps just thinking about it. Also, if I‘d delivered at the baby factory I would’ve had to have been transferred to another hospital and separated from Preston in the NICU.

After my OBGYN learned of the dilemma, she immediately called a surgeon of the hospital that had recently seen a case like this before. This situation is so rare and many medical professionals have told me they had no idea this was even possible. What a miracle that this surgeon who I had never met before knew what to do in this emergency and was able to act quickly. Gastrointestinal problems are not even in his scope of specialty, but he was knowledgeable enough to perform not one, but 3 surgeries on me in order to piece me back together in order to survive. This surgeon still sees me almost monthly when I am hospitalized. He and his team have been a constant support and strength to me when I have had moments of weakness, puzzlement and frustration. I feel fortunate that I have him on my medical squad. We are pretty much on a text to chat basis and I think he appreciates my humor at this point so I’m thankful for that, also.


I mentioned that we had only moved here shortly beforehand. We moved here for my husband’s job with Disney. He is an Imagineer and is helping build a ride for the Epcot Park. His job brought us here, but the fact that we are on this side of the country is a huge blessing.  My original surgeon in Orlando (the one mentioned above) referred me to a specialist down in Miami. This surgeon is renowned for her work in trauma and specifically short bowel syndrome! What are the odds?! This condition is very uncommon but the fact that I am 4 short hours away from someone who helps people like me on a daily basis is mind-boggling. I make the drive down to her office monthly so she can adjust my medicine and tweak my diet. She was also the one who performed my big surgery last August. She is highly acclaimed and knows exactly what to do in order to heal my intestine and give me a diet so that I can recover more fully. I feel so lucky to be here and to be close to her!

We had met some great friends when we moved to Orlando. One of my new friends was coincidentally pregnant, also. She happened to be at the same hospital, and delivered her baby a few days early. They were scheduled to go home earlier, but time was moving slow in getting them discharged. I had been texting my friend and updating her on my status. When things made a turn for the worse and they needed to rush me to the operating room Peyton called David and asked him to quickly come to our room. Within minutes David and Peyton were administering a priesthood blessing to me with about 10 nurses and doctors in the room all bowing their heads in hopefulness and reverence. I had no clue as to what was going on, but in that moment I knew without a doubt that the Lord was aware of what was to come. We had chosen to deliver at an Adventist hospital and chaplains and nurses who reassured us they were praying for my recovery continually visited us. I have felt the Spirit strongly in this hospital, as I have been administered treatment where the Lord was recognized. In the hallway there is a large picture of Christ standing over a patient with a Doctor at His side. I love how they have included the gospel into their healing process.

            Only being here a few weeks before could’ve left us at a tough spot in terms of support. Peyton’s colleagues from work were great in offering meals and support. It was touching to see how quickly people rallied in assistance.  We are also members of The Church of Jesus Christ of Latter-day Saints and when people learned of my condition strangers were offering meals, babysitting, prayers and visits. It was humbling to witness people who I hadn’t met bringing my family food to the hospital, offering to have Samantha over to play and praying for us day and night. These Christ-like individuals have made me feel at ease in long moments of despair and hopelessness. I feel grateful that I am where I am every day.


            I have been hospitalized a lot lately and it has caused me to have a lot of negative feelings, self pity and depression. I have a very wise therapist and she recently encouraged me to look for the positive moments, no matter how big or small. She proceeded to help me realize that when we see things in a negative way it hinders our ability to be conductive. The more that I focus on the negative in any situation; it sends a signal to not progress. I am stalling my healing with my depression. How can I be happy when I am only focusing on the difficulties? I recently just talked to my surgeon and he said, “Catherine, I have only helped you a little, your resilience has done most of the work.” I thought to myself, YES! Continued optimism grows strength! As I look back, I definitely have noticed this in my own recovery. The times that I have been hospitalized but still optimistic, I healed a lot quicker. I remember when I couldn’t even get out of bed the day after my big surgery. I kept thinking, “no way. I can’t walk. I feel like death.” After physical therapy got me up and walking, my self-reflection evolved into “I can do this.” And if on cue, my body decided to recover.



            Being positive is not always the easy way. In fact, when you are in the trenches of the greatest storm of your life, just smiling may feel impossible. I admit, I am still not good at it. There are many days where I think staying in bed until 2pm sounds like an excellent idea. But I do know that you can train your brain to be more confident. Write in a gratitude journal; recognize a tender mercy (no matter how small!) Thank someone who was encouraging. When you find yourself complaining and wallowing in misery, take a moment to be kind to yourself and then try again. There’s nothing wrong from feeling the emotions of sadness, just don’t stay there for too long. The Lord wants us to be joyful, I’m sure of it. 

Monday, January 7, 2019

The. Big. Surgery.


On August 14th 2018, at 5:00am I entered the pre-op room of Miami University hospital to undergo my long awaited intestinal correction surgery. On my surgeon’s agenda was an obstruction removal, resection of my small intestine and flipping the small intestine backwards in order to improve better absorption of nutrients. We knew this was going to be a long day; my surgeon quoted about 12 hours in the operating room. Since we live in Orlando, we made the 4-hour drive down to Miami the day before and treated ourselves to a nice hotel the night before. I had a lot of mixed emotions the few days/weeks leading up until the operation. I had gotten to a good place with my recovery. I had gained back energy, I wasn’t having any nausea and I had no pain. I was so frightened about going back under the knife and having my stomach split open again. In the pre-op room I was so stressed they had to give me some meds to chill me out before being wheeled back. 


Apparently, the chill out drugs had successfully done their job. 



I knew this surgery was going to be a giant stride in my recovery so I was ready and willing, but still pretty uneasy. The surgery took about 11 hours; poor Peyton spent a long day in the waiting room. They gave him numerous updates and they let him see me shortly after wheeling me out. Of course I was out of it for most of the day but I remember Peyton telling me that it went well and she was able to salvage the bits of small intestine I had left, which was a great sign. Recovery in the hospital was pretty brutal. They put me in the ICU (intensive care unit) because of the severity of the surgery. They had me hooked up to many machines to monitor all my levels. They also had to entre a NG tube into my nose after the surgery. This travels down your nose, towards the back of your throat and ends in your stomach. It is used in order to drain all your stomach juices after surgeries. This was my least favorite part of the hospital. My throat constantly hurt and every time I swallowed I could feel the tube. They eventually moved it when my "juices" started running clear. 


The dreaded NG tube. 

 I spent 4 days in the ICU before I started having worse pains in my stomach. It ended up being an infection in the incision that they had to open and drain. Ill spare you the details; it wasn’t pretty, although, Peyton was fascinated. I finally was able to move to a more progressive floor where I stayed for a week longer until I was able to regain my energy and get off the pain medication.



 

After a few days they came into the room to alert me that I was going to get up and walk. Looking back I feel bad because I laughed in their face. I could barely move a muscle without it hurting much less get out of the hospital bed. Getting up and walking that 3rd day was the hardest thing I think i've ever done in regards to recovery. I have never felt so proud of myself than when I took a lap around that ICU. That pain was untouchable but also, its true what the say, the sooner you move, the faster you heal. 




Peyton has always been there for me through this whole ordeal. He continues to be a great cheerleader  and nurse. He came and took care of me after my surgery. He even slept right next to me in a foldout bed while I recovered. He washed his clothes in the sink and ate McDonalds almost every day just to be there for me. I have never been so grateful for my husband than this last 1.5 years. 





            When I got home I was pretty uncomfortable and had to take it easy for a while. Thankfully my parents had come into town before the surgery to help out with the kids. We couldn’t have done it without their help.

            Since the surgery in August, I have been admitted to the hospital 7 times for dehydration and malnutrition, low blood pressure, a few blood infections, and complications with the IV in my chest and some problems with my colon. It has been a rough road, and one that I wasn’t expecting. In a lot of ways I thought that this surgery would solve all my problems and I wouldn’t be as sick anymore, so spending this much time in the hospital has been maddening. Having a chronic illness is difficult. I so wish there was a way I could wake up and feel like my normal self again. I am getting used to having different symptoms each day and trying to navigate life as I recover. The positive thing is I am feeling more myself and getting more energy each day I am out of the hospital. Taking care of Preston is my hardest challenge right now. He is still such a great baby, but he’s at an age (16 months) that requires attention and stimulation.




            One of the best things that happened since the surgery is that I have finally been able to start eating! I am on the BRAT diet (bananas, rice, applesauce and toast). Having my first taste of food after 13 months was emotional and quite overwhelming. As I took my first bite of toast big tears welled up in my eyes. I had forgotten how wonderful it was to chew and taste. I never thought white rice would bring me so much happiness. 2 months into this diet and I am still not completely sick of my 4 items. After a year of not eating, I am so thankful to chew and enjoy textures and flavors. We’ve come up with a mantra, SAVOR THE FLAVOR. I do still have to remind myself to take a step back and see how far I have come. I am grateful that I am on small steps towards normalcy.



A few months ago we went to do a follow-up with my surgeon and we are going to start me on tube feeds. This is where I am fed a liquid formula through a tube in my stomach. I need to be hooked up to this pump for 24/7 to stimulate my bowel constantly. We are trying to get my small intestine to become familiar with things traveling through it.  Luckily, it has a handy little backpack that allows me to be mobile while using it. I am learning to be more comfortable with wearing this out in public. I have some embarrassment with having to wear it all the time, and I constantly think that people are looking at me. There have been some situations where I have had problems going through metal detectors and it has created some confusion.  I have to get more confident in my situation and not let things like that bother me. I am a pretty self-conscious person, so this whole situation has really thrown me for a loop.
I am hopeful that one day I will be able to sustain myself on regular food only. I will probably always have a few digestion problems and I may not be able to stomach (ha!) some certain foods. However, I have faith that one day I will look back on this difficult period with pride. I am strong. I can do this.