I lasted four days at home before going back to the emergency room.

On August 24th, I had my occupational nurse arrive at home to see if my house was meeting my needs and what things I could get to help me move around.

They got me approved for a wheelchair and gave us brands to look at to get a shower chair. My apartment luckily already had grab bars in the shower, so we didn’t need to install any.

My TPN was kept in a long rectangular bag that the hospital gave us, and it needed to be carried anytime I got up. I didn’t have the strength to carry it and I had been given a weight limit of how much I could carry on my PICC arm. The ironic thing was my TPN was too heavy for me to be able to carry my own bag. I had my dad carry it for me whenever I needed to get to the restroom.

We set up my desk chair halfway between my bed and the bathroom so I could take a break on my way there. My bedroom was in no way large- I lived in an apartment so I really could not get very far.

My dad slept on my old dorm mattress topper (since he said it was better for his back) right at the end of my bed. This was so he could help me up anytime I moved and could carry the TPN.

The next few days my dad got better at changing my TPN on his own. He had to change it for me since I was still too weak to move and do anything.

On August 25th, my home nurse arrived, and I met the actual one that was going to be with me for the remainder of my care (the one from the previous day was the on-call nurse). They changed my dressing, and it was then that we realized I had vasovagal syncope. From not seeing my dressing change, I had the same reaction as when I had the two surgeries; blood pressure drops, nausea, lightheadedness. The following week we were going to try having me watch the dressing change with a mirror.

I was eating a few things between the days- some of a popsicle, a spoon of dairy free ice cream, and soup broth.

My esophagus was still bothering me, my upper left abdomen was still swollen and stuck out, and I still had my abdominal pain and nausea, so I was taking my nausea medication all the time.

My TPN these few days had a disconnect time; this meant I was only connected 20 hours to the TPN. I would disconnect for 4 hours and then reconnect later. I was always really tired and low energy when I disconnected.

On August 27th, I had my first shower which was really challenging because my PICC arm couldn’t get wet. My dad saran wrapped my arm and I very nervously showered but managed to do it. This was also the first day I was able to make it to my couch (which was right outside my bedroom door).

On August 28th, I was given a new pump for my TPN and told I had been reduced down to 16 hours on TPN. This was the typical protocol for those on TPN and basically each week the time would reduce (again, expecting that oral intake goes up…).

I changed to the new pump and all afternoon my heart kept having palpitations. I grew to be more and more nauseous. At 2:20 p.m. I was coughing (not from phlegm just from my chest pain) and had immense chest pain.

I got up to use the restroom but collapsed before I made it there. My dad was calling my dietician while my roommate brought my desk chair for me to sit in while I was in the doorway of my bathroom. My roommate hugged me as I cried out pain.

My dad called 911 and the EMTs came and put me on the stretcher. We were told by my dietician to stop the TPN pump, so we did.

The funny thing was that one of the EMTs recognized me and said they got me when I was admitted to the hospital the first time. They said they had told their colleague to race to get me because the last time they saw me I was in a really dangerous position.

They said they were glad to see me (which I didn’t mind because it was a familiar face) and that I looked physically much better from when they last saw me (aside from me actively being in a lot of pain).

When I arrived at the ED, everyone continuously kept trying to move the TPN backpack away not realizing it was a medical device. This made me too nervous to sleep or close my eyes because I didn’t want them to accidentally rip my line out.

I had a chest x-ray done and had blood labs taken from my blood PICC lumen.

The main doctor then came in and told my dad and I that all of my labs came back clear, and my chest x-ray was fine. They said they believed the problem was that the pump was too much for my heart. Basically, reducing the pump time down to 16 hours while having the volume as large as it was, overloaded my heart and caused all this pain.

As they asked about my case, they wanted to know if I had the Gastric Emptying Study yet. It had been almost the end of the week at this point (when it was supposed to be done). We explained it hadn’t been and they said that they’d call and get me in to have it done the following week since there was an ‘urgent’ request on it.

I was then released home and realized I needed to be sure to handle my own lines because when I got home my lumens for my PICC were both clogged from being accessed improperly at the ED.

I was sent a new pump that evening and was switched back to 20 hours and my heart was much happier.

Read how the journey continues into the new limbo in, “Is This the Routine?”