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.