Hey! Welcome back! Several concerned friends of mine have asked if I intend on continuing to put out new content here every single day. There’s truly no way I could keep up with that flow. Honestly, I’m trying to get my story churned out as quickly as possible. My ultimate goal is to get to sharing content full of tips and tricks that I’ve learned through the years that will hopefully help those of you who deal with similar struggles. I am so excited to get to that point, so I’m working as hard as I can to get there quickly! So let’s get to it!
So now I’m NPO, have my NG tube and I’m getting fluids. Then, they start talking about other new things – how’s this girl going to get her nutrition because it’s pretty clear that food isn’t working out for her? Unfortunately, I was not invited to a lot of these talks. So I’m not really sure how they arrived at the conclusion to go straight to TPN, which is stands for Total Parenteral Nutrition, essentially meaning IV nutrition.
In order to administer TPN, you must first have central access. A normal IV is peripheral access, basically meaning it goes into the branches of your circulatory system. While central access, which could include ports, PICC lines, Hickman and Groshong lines, go directly into the large veins or trunk of your circulatory system.
They told me about the differences between a few of the central access line options that I had and even brought dummy dolls in to show me. When they explained the Hickman/Groshong option, they made it sound not all that fun. It was there and could not be submerged in water 24/7. There was no escaping that fact and as a thirteen year old who loved spending all summer at a pool, this did not make me want this in the least. When talking about the port though, they told me all about how I could de-access it and swim as much as I wanted.
You see, a port is placed under the skin, and when it isn’t accessed, it’s pretty much all the way safe from infection (a leading medical issue involved with central lines). You might be asking yourself, ‘What does she mean by accessed and de-accessed?’ When a port is de-accessed, it looks like a piece of butterscotch candy under the skin. That little bump is all you can see. When a port is accessed, there is an external needle with a pigtail that pierces through the layer of skin on the outside of the port into the port’s core, which leads to a catheter that feeds to a major vein.
The unfortunate thing that I was not told is that while it is possible to de-access and re-access a port as often as you want, it’s not a good idea. There is always a risk of infection when you expose yourself to a new access and dressing change. Infection in a central access line is a serious matter since it connects directly into a large vein. Since I was going to be receiving TPN every night of the week and dressing changes only happened once a week, this whole thing about being able to swim and shower every day was bologna. This wasn’t the information I was given, so of course, I picked a port.
My port was surgically placed and I was hooked up to my first dose of TPN when I woke up with it. For the next two and a half weeks, I remained in the hospital while they weaned me down to the amount of hours they wanted me on TPN, which I believe was 9 hours. I was still NPO and still had my NG tube for most of this time.
Believe it or not, I had lots of fun while I was at Children’s. My nurses were amazing, I met other patients in the play rooms, one of the Residents (who ended up becoming my doctor later) brought me nail polish and we painted our nails together. Stuff like that really happens in real life at Children’s Hospitals. It’s not just portrayed in commercials to make them look cute and inviting. Special things that kids remember really do happen in real life, which I think is comforting to know.
I also spent a lot of time in those play rooms. There was one called the ‘Aikman End Zone,’ named after the Dallas Cowboy football player. Anyway, they had computers, LOTS of craft supplies, video games and things I don’t even remember because I mostly only cared about Myspace and craft supplies. The Child Life Specialists, who were essentially the people who brought you fun toys when you were scared and made the hospital fun in general, became some of my great friends since I was in and out of the place so often. And I was there every single time they were open during the day, unless I had some dumb procedure or wasn’t feeling well enough to go.
Anyway, once they got me to where they wanted me with my TPN hours, they clamped my NG tube from the suction to make sure I could tolerate oral eating again, and then started me back on clear liquids. Then, I moved on to full liquids and soft foods like mashed potatoes. Then, I was on to my favorite pizza on the planet (Children’s Hospital, obviously) and chicken fried steak. That escalated quickly, huh?
Then I was cheered right out of that place, back home with my new weird normal. We probably also went to Red Lobster to get me some crab legs after I was released because it was basically a tradition to go there after any hospital shenanigans. But not long after we got home, my home health nurse arrived for the first time. She taught me how to set up my TPN. My dad took notes and typed them up for me to have to refer back to when I was going to be doing it on my own. Then that night, I went to bed connected to a backpack for the first time!
This may all be a little confusing. You might have pictured my room turned into a hospital room, with a pole, hospital bed and whatever else. But really, the only difference was the tower of Sterilite drawers that held my new supplies. Home TPN comes with a mobile pump. It uses batteries and doesn’t have to be plugged in like most hospital pumps. So I am able to zip my TPN bag and little compact pump into my backpack and take it wherever I please!
Over the course of a few months, I had gained a whopping thirty pounds. You read that right – thirty pounds. My dad still calls it a medical miracle! This was an amazing advancement. Though, it did mean that all the clothes I had accumulated over those years of being the same size didn’t fit! But it was so worth it! While this development was huge, my problems did not stop. I still had bloating and pain nearly all the time. I still ended up in the hospital getting NG tubes every few months due to severe symptoms. But I was able to eat, though not comfortably, and I did not throw up every single thing I put in my mouth.
I had to learn to deal with my new port, which (Surprise!) didn’t go as smoothly as the doctors had led me to believe it would. Here’s the thing, your home health nurse comes to change your dressing and re-access your port once per week, and this meant I only had one “free” day. I somehow managed to talk my nurse into coming on weekends (God bless her.) On that day of the weekend when she was going to come, I went ALL OUT. I would plan entire group outings to waterparks, plan the entire day being spent at the pool, going to Six Flags, whatever it was that I felt so deprived of being able to do with my port accessed all the other six days of the week. I’m so grateful that my parents helped me and understood these feelings and made every single effort to make me still be able to feel like a kid under these circumstances.
Bathing was a struggle. For the first couple of years, my mom would wash my hair in the sink a couple times a week. Looking back, this could have been avoided, because now I know ways to cover a dressing to make showering much easier. At the time though, I was given what are called “Shower Shields.” They fell off nearly instantly, even when reinforced with additional tape. (If you have a central line and want to talk about shower protection, drop me a line, I am all about it!) So I would take as great of a shower as possible in the minutes leading up to my nurse getting to my house. I lived for that one day. To be honest, for the rest of the week, I felt pretty doomed to my port.
I also hated walking in crowds when my port was accessed. Can you imagine walking around with a needle poking out of your skin and the thought of it getting dislodged by someone bumping into you? Yeah, that’s not a great feeling. Also, I may be getting a little personal here, but my port was not in a traditional port place. Typically, they are placed on the upper chest. My surgeon placed mine on my ribcage on my side. Right about where the bottom of a band of a bra sits. This was super uncomfortable, but I felt it was worth not having it exposed for everyone to see. So I didn’t say much about it at the time.
Even with these complications, all I have to say is hooray for finally getting somewhere with my weight! This was a really exciting time in my life to be able to finally get some meat on my bones. I am so thankful that my body accepts TPN as nutrition. Some people have lots of trouble with it.
It feels like I’ve told you guys so much already, but we have so much more ground to cover to get to where I am today! I hope to see you here again tomorrow! Thanks for following along!