Can't Keep Me Down

     This Monday is going to be a big day for me as I'm scheduled to have a new long-term feeding tube placed. It's called a GJ (Gastrostomy-Jejunostomy) Tube. For those who don't know, I currently have a NJ (Nasal Jejunal) feeding tube that goes through my nose, down my throat, past my stomach and into a portion of my intestines to deliver a special formula that gives me the nutrition I need to live but can't take in orally. This new tube will have the same function, but will be placed directly through my abdomen wall with a portion of the tube in my stomach and the rest continuing into my intestines.

 

 



      I'm not going to lie, this is all a bit scary and overwhelming. I went for a consult with my surgeon earlier this week and when he pulled the tube out to show me what it would look like I couldn't help crying because at that moment it became so REAL. "I'm going to have that TUBE in MY belly." It's hard to acknowledge some days that this is really my life. Growing up I had so many plans for my life, and this was never one of them. I've realized though that sometimes it's ok to allow myself to just be sad, it's staying there that causes a problem so here's my list of positives about my situation to help put all those fears and sadness on the shelf for now:

 

1) No more sore throat and nose bleeds.

 

2) While I'm in the hospital I can order all the free Schweppes ginger ale and applesauce as my tummy can handle! I mean come on, who doesn't like free stuff.

 

3) I'll get to spend my recovery watching movies and being waited on hand and foot. Just call me Princess Simon'e =)

 

4) While surfing the internet yesterday I saw a list of positive things about feeding tubes and one of them was that after this surgery I will have two "belly buttons" because some of the tubes are called buttons. Not many people can say that hahaha.

 

5) I have a surgeon that I love and who has taken every step he can to put me at ease and keep me comfortable during my hospital stay. Finding doctors who have my best interest at heart and go out of their way to give the best treatment hasn't been quick or easy, but each disappointing doctor has shown me what I don't want and lead me to a better replacement.

 

6) This tube will help keep me alive. I think this alone makes getting my new tube totally worth it. My life may not be all that I planned yet, but it's still worth living for and every day I get to spend with my family and friends is a blessing.

 

 

(Both picture found through Google. First picture is from: http://www.uofmchildrenshospital.org/fv/groups/public/documents/images/115616.jpg. Second picture is from: http://www.na.kccustomerportal.com/documents/upload/application/2812/learning%20center/hierarchy%20description/dh_transgastric_c18246_06%2025%202010%207%2014%2026.jpg.)

Tools of the Trade Tubie Style

I have officially been a Tubie for two months! There have been plenty of ups and downs along the way, but the fact that my NJ Tube is keeping me alive makes it all worth it. This week is the third annual Feeding Tube Awareness Week so I figured it's the perfect occasion to share a few tips and tricks I've found to keep this feeding tube as comfortable as possible.

1) Buy a humidifier- A dry tube rubbing against a dry nasal cavity can be painful! Keeping the air moist helps keep nasal passages from drying out too much and ease the pain a bit.

2) Saline spray and saline gel- The spray helps moisturizer deep in the nose and the gel can be applied in the nostril around the tube to prevent any rubbing. I was getting a lot of nose bleeds and this helped a bit. PS. DO NOT USE PETROLEUM JELLY ON YOUR FEEDING TUBE!! I just happened to mention to my nurse that I was using Vaseline in my nose (before I got the saline gel) and she informed me that it will break down the plastic used to make feeding tubes.

3) Sip on drinks or suck on candies- This helps keep your throat from drying out leading to less throat pain and feeling gaggy from the tube tugging in your throat.

4) Buy some make-up remover- I had an awful time trying to get leftover tape residue off my face from using silk tape to keep my tube in place. One day I decided to try my make-up remover and it works wonders!

5) Find a good tape- Having a good tape is so important because there have been a few times where I've accidentally snagged my tube and it was the only thing preventing it from being ripped out. I've tried silk tape because that is what they had in the hospital, but beside the awful stickiness it left behind I also had to change it multiple times a day because it would never sick well for me. Tegaderm has been pretty great and no matter how long I leave it on there's almost no sticky residue left behind. I've also tried Hypafix and love it. It does leave a bit of residue, but keeps my tube in place so well that it's worth it.

6) A good pill crusher- Feeding tubes are often very tiny and clog easily, so if you will need to take medications through your tube and can't find it in liquid form it needs to be COMPLETELY crushed into a powder and dissolved in water. It's much better to take the time to crush your pill well than to end up in the ER getting it replaced.

That's all for now, but I will update with any other tips I find and feel free to leave any suggestions of your own. =)

Sharing The Spotlight

I’ve never been the type to enjoy the spotlight. Growing up, I went to a school that hosted two school wide theatrical performances each year and I loved being involved in the behind the scene productions. Designing and making props, making sure everyone had their costumes and made it out on time, coordinating the sound and timing of the performances, I just loved it all. I usually had a part or two on the stage also, but the bright lights and nervous jitters just weren’t my cup of tea. Yet, here I am in the spotlight again, although this time with the bright lights of one exam table after another and the jitters of waiting for appointments, test results and future procedures.

As frustrating and scary as being chronically ill is, working hard to look for the positives in a trying experience can teach you a lot. Personally I’m learning to ask for help when I need it, and cultivating the humility to accept that help even on the days I feel I don’t need it (because if I'm perfectly honest with myself I can ALWAYS benefit from a little extra help). My faith and endurance have surpassed any level I’ve ever imagined and it gives me the strength to push through the tough times. I’m also working hard to find productive ways to pass time. Sitting around feeling sick sucks, so keeping my mind active helps me not to focus so much on how I’m feeling physically or my fears of the future.

Being chronically ill also puts you in the “spotlight” of other people’s minds, especially your family’s. “How are you feeling?” “Is there anything I can do for you?” “What’s your pain level today?” “When’s your next doctor appointment?” “Is it time to refill your prescriptions?” I am so grateful to have a family that willing and lovingly tends to me making sure I’m as comfortable as possible, but I find myself often wishing there was more I could do for them. I’m not working so I can’t help with the bills, especially my never ending medical bills. I’m not allowed to drive again yet so I can’t run errands, take myself to the doctor, or help pick my little brother up school. I quickly realized focusing on all the things I couldn’t do was only good for making myself feel pretty useless and decided to get off the pity potty and find things I could do.

For example, now that I’m gaining more energy I can help with the chores. Washing towels, making beds, and emptying the dishwasher may seem like little things, but I saw a quote recently on Instagram that said “Little things add up.” When my family is coming home from a long day of work or school, it’s nice that they can relax and have one less thing to worry about. I’ve also been working hard to put the spotlight on them. “How was your day?” “How are you feeling today?” “Is there anything I can help you with?” Family and friends of people who are ill spend so much effort taking care of that person that it’s often a great way to return the favor by simply showing interest in them and working hard to support their goals. That could mean being their sounding board for new ideas, helping manage their to-do list to keep them organized, or making breakfast or lunch so they can get out of the house on time. Again, the little task truly do add up to save time for them and to show how much you care. We Spoonies may not always be able to do much, but using our energy to support those who support us is never a waste of spoons. (See “Hi, My Name’s Simon'e and I’m A Spoonie” to learn about the Spoon Theory.)

A Dose of Love and Support...Just What the Doctor Ordered

     I forgot. No, that's not right. I was way past forgetting. I didn't know. I didn't know that I could ever smile a genuine smile again. I didn't know the joy I could feel from busting a move to my favorite song. I didn't know what it meant to complete a coherent thought and have a conversation. I didn't know there was life outside of my own home. My heart was beating, my lungs were taking in oxygen, but my mind was dead to the world. By the time I made it to the emergency room for the umpteenth time, my poor body was so dehydrated and malnourished I could barely drag myself inside. It blows my mind that if it hadn't been for my amazing family and doctor stepping up and saying that I needed more than anti-nausea medications and fluids that I might have been sent home, again, to continue suffering. I'm so grateful for the people in my life who were willing to take over my care when I didn't have the strength to do it because they helped saved me.
     My first night in the hospital was so scary because I finally realized how far gone my body was. I weighed 76 pounds and couldn't maintain safe vitals without medical intervention. My blood pressure stayed so low that I required bolus (or large amounts) of saline fluids just to keep it at acceptable levels. There were nurses coming in and out of my room all night but with my sister sleeping by my side and my mom sleeping in the chair next to me, I was able to make it through. The next challenge tackled was my blood sugar. Since I was unable to take in much food by mouth I was always dizzy and weak so spent a lot of time on "fall watch". I felt like the most annoying patient having to page the nurse to walk with me the ten steps to the restroom every time I needed to go, which is about every 45-60 minutes when you're on a bolus I.V. drip!
     Early one morning after a relaxing hot shower, fresh jammies, and a comfy new I.V site I was ready to settle in to a good movie when the nurse came in to check my blood sugar and it was in the 50's. For those who don't know, that's not so great. The normal range is about 80-120, so they gave me four glucose tablets (which are delicious by the way) and took it again. My blood sugar had dipped even lower to 44. At the time I didn't realize this was such a big deal since managing blood sugars was new to me, but the number was blinking in red and that was the first thing that alerted me. When my nurse walked in with other nurses for help and guidance, I was a bit freaked. They said they were just going to give me a bolus dose of Dextrose fluid (really concentrated sugar water) in my IV. Initially I was happy that they could solve the problem without involving my stomach since too much sugar at once is no bueno for my tummy, but because the Dextrose is super thick like honey it just blew my vein open which was extremely painful. The IV technician blew three more veins before getting another access site and we tried the Dextrose again. Thankfully it went a lot smoother and my blood sugar was stabilized for the moment.
     My biggest challenge of this hospital stay was my feeding tube. This was a decision that was hard to make, but truly necessary to save my life. About five days into my stay I had a nasojejunal feeding tube placed which is a thin flexible tube that travels through my nose, down my throat, past my stomach and ends in my jejunum (a portion of the small intestines). This type of tube bypasses my stomach to give my body the nutrients that it needs without causing all of the symptoms I get from eating food. My hope is to gain some weight and get my body healthy while I work closely with my team of doctors to find a plan of treatment that will get my stomach functioning to a degree where I can maintain my health and weight by eating orally.
    It's taken some time to begin noticing the effects of having a nourished body, but I've slowly been feeling myself return. Although I still struggle with my Gastroparesis symptoms daily, I smile. I sing. I dance. I crave life! I look forward to the day I can have the energy to hang out again and even...I can't believe I'm saying this...get a job. I've learned so many lessons along this journey and felt my faith grow exponentially.  I want to send out a huge thanks to everyone who visited, called, sent cards and gifts, supported and cared for my family, shared scriptures and encouraging words, and just sat with me when that was all I could give back. I loved when the nurses would walk into my room and comment on how cheery my room was with all of the cards on the wall, balloons with their get well messages, and my bed full of stuffed animals keeping me company. Having so much love and support truly kept me going, and I know it will continue to help me move forward one day at a time to reach my goals.


Post NJ placement





Feeling much better after a few weeks of NJ feedings!