WARNING: This post is longer than usual and is intended to inform you of this past week and of my experience with the placement of my feeding tube. You may need to grab a snack before you read.
Well, this past week has been a whirlwind, to say the least. Last Saturday night, my best friend of six years asked me to marry him and I said yes! We are extremely excited for this new season and as soon as I get pictures of the proposal from the photographer, I plan on doing a post all about mine and Jason’s relationship. The Lord really wrote one of the most beautiful love stories for us, although I may be a little biased 😉
Monday morning was a little less exciting though. I was at UMC’s endoscopy center by 8:45 a.m. in order to be checked in for my tube feeding placement procedure. Right before check-in, some of our good family friends, Rich and Cathey Jones, came to pray with me and wish me well. What a blessing! I was soon fitted with a gown, some pretty ugly hospital-brown socks, and a wonderful IV in my left hand. Pretty soon I was being wheeled down to the procedure room where I met each person that would be involved in my procedure. After waiting a bit on my doctor to finish a colonoscopy in the other room, he finally came in and I was put to sleep just a few minutes later.
When I woke up, all I remember is feeling SO much pain. I could see nurses standing around me, and my mom was to my right holding my hand trying to calm me down. All I could do was cry and moan. My mom said that they had a hard time controlling my pain and had to give me 3 1/2 out of the 4 doses of morphine that I was allowed before I was calm enough. I remember being very thirsty, and gave me about 5 very little sips of water before the charge nurse came in and said the doctor had ordered very strict NPO for the next 24 hours. That’s right-absolutely nothing by mouth (not even water)-for a whole day. I’ve never gone even 5 hours without eating and they expect me to go a whole 24?! But I was in so much pain that I couldn’t focus much on my diet (or lack thereof).
The first thing I did when I was finally left alone was ask my mom for my engagement ring. She had kept it for me during the procedure so it wouldn’t get stolen and I hated not having it on my finger! Jason did such an amazing job picking it out.
Eventually we were told that because I was in a severe amount of pain and Dr. Hancock thought I didn’t respond well to the anesthesia, I was going to be admitted into the hospital for overnight observation. My mom was honestly glad to hear this, even though we were originally told I would get to go home (and eat) just a few hours after the procedure. But unfortunately nothing is ever “normal” with me so I have to learn to deal with it.
My sister Karli moved to New York this past Thursday to go to college at The King’s College in New York City, so my mom hosted a going-away party for her Monday evening at Alamo Drafthouse. I was unable to attend because of this procedure, so my fiance (I still love that word!) came straight from work to stay with me and keep me company (special shout-out to my Aunt Debbie and Uncle Dennis for coming to visit me and see how I was doing before the party!). By that time, it was close to 6 p.m. and I was the only one in the endoscopy recovery center because UMC still did not have a room for me. But at 7 p.m., I was wheeled to the Family Care Unit (also known as the overflow floor) and into a room.
One of my best friends, Marlee, came to see me and stayed with Jason and I for a couple of hours. It wasn’t long before I had several visitors (shout-out to Addie, Regan, Kate, Megan, and their friend whom I can’t remember her name…). After a long and hard day, it was so nice to be surrounded by friends!
Jason went home when my family came to my hospital room, and my mom stayed with me overnight. At 6 a.m. I was woken up by a nurse needing to take my blood. Thankfully I had been kept hydrated by the IV fluids and she was in with one stick and out in ten seconds. I was given morphine soon after for my pain and I had a few intermittent naps before Dr. Hancock was in my room to check on me around 11 a.m. He told me that because I had very little tissue/fat and I was so tiny, and because he had inserted a 24 french (pretty big) size feeding tube into my stomach, he wanted to be extra cautious with me and keep me yet another night. I was disappointed, but okay with this as long as I could eat. He said I would most likely get to eat later that evening. I was still disappointed because this was longer than 24 hours.
However, I still had friends that kept me company and I had a lot of pain that took my mind off of the hunger pains! I laid in bed all day, except to go to the bathroom, and wow did it hurt to walk or move. But I had several visitors, including Sydney Smith and Madi Collins (thank you for my princess coloring book and my #1 mom puppy dog- I think Rachel Gilmore was jealous 😉 ). Brittany, my best friend, stayed with me for a few hours and kept things lively and positive as always. Megan Houghton, a girl I grew up with, turned out to be working on the floor, so she came to visit before leaving for the day. Hannah came to visit directly after her shift at Covenant and was mistaken for a respiratory therapist sitting down on the job (lol at that, but you also are going to make a great nurse because you’re great at moving people and my tube feeding site doesn’t gross you out. YOU ROCK). Mary Burt was there to brush and braid my hair when no one else could because they didn’t have her skills. Also thank you for the hair ties; it was pretty awful trying to use a headband to hold my ponytail in. Tatiana, God bless her, turned out to be my nurse aid. I got to see her at least every four hours when she took my vitals. She is a true friend and is also going to make a great nurse because she washed my hair, dealt with my bodily fluids, brought me popsicles (when I could finally have clear liquids on WEDNESDAY), and generally kept me in high spirits. Pawpaw also came to see me for a little while Tuesday evening and he kept my friends laughing and made good conversation with everyone.
This day also happened to be my parent’s 25th wedding anniversary. I am so blessed to have a mom and dad who will do anything for me, even when the day should be all about them. I am even more blessed to have a fiance that told my parents that he would stay with me when he got off of work so they could go to dinner and celebrate.
So Tuesday was a good day, besides the fact that I was told I wouldn’t get to eat until breakfast on Wednesday morning (I cried when this information was relayed to me). It hurt so much to cough, laugh, or move, but I was grateful for the company that kept my mind off of everything.
I didn’t get a lot of sleep Tuesday night as the respiratory therapist tried to give me a breathing treatment at 1 a.m. I told her no and that I would wait until morning. After she woke me up, I had to take another dose of morphine to try and get back to sleep because of the pain. The morphine had started to burn going into my IV so it now took approximately 5-10 minutes to inject the dose in where I could stand the burning sensation. Eventually, I was asleep, only to be awakened at 4 a.m. for vitals. Each time I was awake, I kept hoping it was time for breakfast so I could eat because I had literally been dreaming of food all night. Finally, I woke up around 6 a.m. to a knock at the door and a young woman bringing in a tray for me. When I heard the word “dietary” after her knock, I was up so fast. I woke up my dad so he could wheel the tray to me. Chicken broth and jello have never tasted so good. I had never been happier to have a clear liquid diet after going 56 hours without anything to eat or drink.
Dr. Hancock was in to see me just a few short hours later and I was told I would get to go home that day. I was so relieved! Even after I felt like I had been lied to so many times about when I would get to go home and eat, I was very thankful for a doctor who cared enough to be cautious with me and take very good care of me.
Right before lunch, one of the associate pastors from my church came to see me and pray for me. He congratulated me on mine and Jason’s engagement and told me that he was there the day Jason was born and it’s just crazy to think how grown up Jason is now. He stayed for just a few minutes after to visit and talk with my parents.
At this point, I was unsure of when I would get to go home because we were having issues with our insurance. It seemed almost every home healthcare service in Lubbock was not in our network, so we couldn’t get the feeding tube equipment, the formula, or a home health nurse. It took several phone calls, 3 visits from the social worker, and lots of prayers before I got a call at 4 p.m. from IV solutions saying the insurance had sent them the wrong information and they were actually in our network. Praise Jesus! This was the final thing we had to have in place before I could go home, so now I could be discharged! I had spent the day in bed eating as many clear liquids as possible (4 cups of jello, chicken broth, beef broth, apple juice, sweet tea, and a popsicle), but I was glad to be going home where I could be on a soft diet and get back to eating regularly.
A few minutes before I got the call I had been waiting for all day, Rachel Gilmore and MaKenna Pembleton came to visit. It was such a blessing to see two of my dear friends, and a special thank-you to both of them for helping me pack my things and for helping me get to the car when I was discharged!
IV solutions was at my house within the hour with all of my equipment and my formula that I would use for feedings. The representative was very nice and showed me how to use the pump. A couple of hours later and a nurse from UMC home health was over to hook me up and do my first feeding. After completing the necessary paperwork, we discovered that the tubing IV solutions had given me did not fit in my button. We tried and tried to get it to work but nothing would. So Pat, my nurse, was on the phone with a pediatric nurse to see if she was doing something wrong (if you remember from my last post, not a lot adults get placed with low-profile buttons like mine, only kids do). After a few hours, they couldn’t figure it out. So Pat said she would be back in the morning with the pediatric nurse after she had done some more research.
I was so frustrated. I had wanted so badly to start my feeding that night, and I was afraid that somewhere, there was a miscommunication and I was given the wrong button and then all of this would have been for nothing. But of course, my imagination was just running wild. Both my mom and Jason calmed me down and told me it would all be okay. My mom wasn’t sure if she wanted to leave me here while she took Karli to NYC, but I told her she had to go. She agreed only after Jason said he would stay home from his leadership retreat to take care of me (he really is the best).
The next morning, I got up early to shower for the first time since Monday (don’t judge). I had a mandatory teaching assistant meeting at 8. Jason came to pick me up at 7:40 and he stayed in the College of Human Sciences until my meeting was over to take my back home. By the time we were back at my house, my family had already left to fly to NYC, so I didn’t get to really say goodbye to Karli.
I laid in bed throughout the morning until Pat called to tell me she would be bringing the charge nurse from the GI lab at 3 p.m. so we could figure out my situation. During that time, I got a call from one of my nurse’s at Cook Children’s. She had heard about the situation after my mom had called Dr. Hancock’s office earlier that morning to tell them what had happened. She suspected I had just received the wrong tubing, so she asked me to send her a picture of my button. I did, and she said I had received the Boston Scientific Equivalent for the Bard button. This was what I was supposed to receive, but everyone in the hospital was calling it the Mickey button, which is slightly different.
So it turned out, IV solutions had sent me the tubing for the Mickey button instead of the Bard button. So when Pat and the two other nurses came to my house, the GI lab charge nurse showed us that we were actually given the right tubing from UMC, Pat just didn’t know to try it. It was all very confusing, but we eventually got it figured out and I was hooked up to my first feeding of pedialyte within minutes!
After they left, it felt as though a huge rock had been taken off of my shoulders and I immediately just felt better. It felt so good to know that I could start feedings without a problem!
I started feeding with the Nutren 2.0 formula Thursday night and I’ve tolerated it well since then. My fiance has been so wonderful to me this past week, especially the last few days. He has really taken care of me and this experience has been so good for us a couple.
Brittany has been staying with me overnight and it is such a relief to know someone is there whenever I need something- no matter what. I really do have the best of friends!
So as you can see, this has been a very trying and very painful experience. Today is Saturday and I am still in pain when I cough, but I’m doing very well overall. The Lord blessed me with a great doctor and I am thankful for understanding professors and the ability to have this done before school starts Monday. I am SO excited to start gaining some weight and to be healthy! Please keep me in your prayers as I continue learning about my body and my button. Pray for minimal pain as my stomach muscles and my back are what continue to hurt the most. And thank you so much to everyone that has called, texted, and come to visit me! It means so much to me and to my family as well to know that so many people care for me. I live a very blessed life!