Home Sweet Home

I will just pick up where I left off. The abdominal CT came back clear of infection around my J-tube. This meant that my feeding tube can stay in place and can still be used. Then started the waiting to see if the infection would begin to clear over the remainder of the weekend.

Saturday, March 14th, dad brought pie shakes to celebrate PI day. I couldn’t tolerate more than a few drinks of mine but it was fun to continue our PI day tradition, even in the hospital. We played games and hung out until late when mom and dad went home.

Sunday, March 15th is when things started to get crazy. Dad came in the morning as he usually does and brought me coffee. A family friend came soon after and brought a fun new game, Disney Pictopia. We all played for a while until dad had to leave to go to my Nana’s. Mom arrived shortly after and we continued to play games. I had an amazing nurse that was super fun. Him and dad hit it off right away as they have a lot in common. He would come hang out in my room when he had some time and share some crazy stories.

In the afternoon, mom got a text from my sister with a screenshot saying that, as of Monday morning, Salem Health would not be allowing any visitors because of Covid-19. We called my nurse in to see if we could get more specifics on what this would look like and he had no idea. Of course they posted it on the website before even informing the nurses and doctors! While he went to clarify and get more information mom and I continued to play games and hang out. He soon came back saying that not only was this in fact true but that they had just updated it to effective immediately. He said mom had a little while to finish our game and gather her stuff but then she had to leave. Nurses were supposed to check all their rooms and call security on anyone other than the patient that remained in the room.

Now, I am an adult and am capable of spending time by myself in the hospital. It is nice to have people to pass the time with but not crucial. I was incredibley lucky that my mom had already brought me a bag of stuff from home. I had my laptop, kindle, chargers, toothbrush, clean things to change into, and hygiene items to clean up with each day. I will be honest though, that I got quite emotional when mom had to leave. It is harder to be alone knowing that there is someone that wants to be with you and is being told that they are not allowed in.

Sunday evening and night passed without any more drama or much sleep. I firmly believe that a hospital is the hardest place to get good sleep. There are people checking on you, taking vitals, drawing blood, and other patients making noise ALL NIGHT LONG.

Monday morning came and the hospitalist came by to see me. She said that while my feeding tube looked clear, in the CT there appeared to be a small mass on the base of my lung. They were concerned that it may be infection breaking off from my heart and wanted to do further testing to make sure. A little while after she left, a family friend that works at the hospital dropped off a coffee for me, which I appreciated so much. Then the ID doctor came in and said that she was certain it was not a pocket of infection in my lungs, and that my heart was fine, but that once the radiologist wrote it as a possibility in the report it had to be evaluated thoroughly. Both doctors informed me that I would be having a transesophageal echocardiogram (TEE) later that day. The told me it was a procedure done under sedation, much like an endoscopy, and that I wouldn’t feel or remember a thing.

I got out of bed for a little bit to clean off with baby wipes, brush my teeth, and change into fresh underwear and shorts. I called mom and let her know the plan. The nurse came in with the consent forms, one consent for the procedure and one consent for the sedation. I was informed that the procedure is done in the room and that I would need to be monitored more closely for a few hours after as the sedation wore off. The nurses prepped the sedation meds and we waited for the tech and doctor to arrive. I was already on a heart monitor but was hooked up to a blood pressure cuff and a pulse ox to monitor me during and after the procedure.

The tech arrived with the echo machine and started prepping all the equipment. Soon after, the doctor arrived. Numbing spray was sprayed in my mouth and throat and the nurses asked if they should begin administering the sedation. He told them to give me 1 of versed. For anyone that doesn’t know 1 of versed does very little, if anything in terms of sedation. He then began the procedure. A tube with a camera on it was shoved down my throat and moved around to get pictures of my heart through my esophagus. This was a painful procedure and I gagged the whole time. Tears were running down my face but I couldn’t do anything to stop what was happening. When he finished the doctor said ‘looks clear’ and left the room. The nurses were all shcoked at what had just happened and couldn’t believe more sedation was not administered. My heart rate and blood pressure were so high from the stress that they had to monitor me for a while after until my body calmed down. This was the THIRD time is less than two weeks that I was not sedated for a procedure I should have been sedated for.

Later that day the hospitalist came in to inform me that the TEE was normal and that my heart appeared completely fine and infection free. She was however still concerned about the spot on my lungs and wanted a chest CT to see if we could get a clearer picture. By this point it was to late in the day to expect the scan to happen so that meant another night in the hospital. Just as every other night I did not get much sleep and wanted so bad to just go home.

Tuesday, March 17th I was informed that I would be having a CT of my chest and that the doctors were discussing placing a new line, meaning that I could go home. There was some debate over what type of line would be the best for me that would still leave options available in the future. The ID doctor, the hospitalist, and the radiologist were all trying to figure out the best course of action. I once again got cleaned up and ready for the day. This time I packed my bag and prepared to go home knowing that if my line was placed today it meant that I could be discharged.

In the early afternoon, transport came and took me down to CT. The CT itself was uneventful. As we were returning to my room my nurse stopped us and said that interventional radiology was ready for me to come have my line placed. The ID doctor had decided on a single lumen tunneled Groshang, as it provided access that I needed but was a bit less exposed to infection than the double lumen I had had before. Transport turned my bed around and we headed back downstairs to the Cath lab where my line would be placed.

When I entered the procedure room I instantly recognized the nurse that had been present for both my feeding tube replacements the week prior. She was very nice and helped get me prepped. She pulled me off the heart monitor I had been on since I got admitted and hooked up new leads for their machine. She assured me that she had sedation meds ready and would be using them. I was placed in position on the table and my right chest and shoulder were scrubbed with Iodine. (Side note: Iodine is yellow and sticky and it gets EVERYWHERE but it is the only sterile cleaner I am not allergic to so it has to be used).

The interventional radiologist then came in and the nurse administered the sedation meds. She gave me versed and fentanyl which in combination usually sedate someone pretty well. For whatever reason, even after giving me several doses, I was no more sedated than I had been before. This meant that I was awake for the entire procedure. This was the FOURTH time in two weeks that this had happened. Having a central line placed is not the most painful experience in the world, but it is definitely not easy either. A cut is made in the skin of your chest and a cut is made near your collarbone. The tube and guidewire are threaded just under the skin between the two cuts to form a tunnel. The tube is then placed deeper into the vein under the second cut and threaded in until it reaches your heart. Finally the cut near your collarbone is glued shut. Despite the ID doctor wanting a single lumen, to try to limit infection, the radiologist decided to put in a double lumen.

Near the end of the procedure I started feeling pain when I took a breath and I became tachycardic. When the procedure was over then cleaned the iodine and blood off me as best they could and got me back into my bed. As soon as I sat up I started coughing and could not stop. As the nurse took me back to my room the pain in my lungs did not go away and the coughing continued. When I arrived back in my room the nurse was informed of what was going on and said that I didn’t look good. The hospitalist happened to be on the floor and came in to see what the problem was. She ordered a stat xray to check my lungs and had me started on oxygen.

The xray was done and came back normal. They were concerned that i had a punctured and collapsed lung but the xray ruled it out. I was still on oxygen and had been hooked back up to heart monitors, blood pressure cuff, and pulse ox. My respiratory rate was at around 40 (normal is 12 to 20) and it was still extremely painful to breathe. I was monitored closely by several nurses for the next couple hours before shift change. The respiratory therapist even came in to check me out. She said my respiratory rate was at 60 and that it needed to be ruled out that it wasn’t a response to pain. I was given pain meds and things got a little better for a little while.

New nurses came on for the night shift and were informed of what was happening. I should have been discharged after my line but they weren’t comfortable sending me home like this. My mom had been trying to get a hold of me since the afternoon and finally she called the hospital and asked to talk to my nurse. The nurse filled her in on what was going on and why I could not yet be discharged. I was monitored closely overnight.

In the middle of the night I started smelling my tube feeds (which is unusual). I was still in so much pain and my call light was not within reach so I couldn’t do anything about it. The next time the nurse came in I mentioned that I thought something was wrong with my feeding tube. He pulled back the blanket to show a huge puddle of formula all over me and the bed. Being unable to feel my legs, I had no idea that it had been soaking my shorts and gown for hours. A very nice CNA was called and I was helped to the bathroom to clean up. I got fresh things to put on and was given a washrag with warm water and soap to clean off my leg. While I cleaned up the CNA put fresh sheets on the bed and got me a clean gown. After she got me settled back in bed she even tried to wash my shorts and hung them up to dry!

For the rest of the night and the next morning I slept in short little bits. I would get pain meds that would help relieve the pain just enough so that I would fall asleep. A little while later the pain would begin to return and I would be wide awake until my next dose of pain meds. This persisted into the morning and the doctor ordered another xray to check for blood clots or air embolisms. I had been given medication in the night to prevent or break up a blood clot just in case but the pain had not gotten any better. The second xray also came back fine. It was decided that the doctor probably nicked a nerve while placing my line and that it would just take time for it to get better.

My doctor came in a little while after the xray and said that even with being in so much pain I needed to be discharged. She now had patients with Covid-19 and was worried that I was at higher risk of getting it by staying in the hospital. She made it clear that I am an at risk individual and that quarantining at home was the safest thing for me. The afternoon of Wednesday, March 18th I was finally able to be picked up by my mom and taken home.

On Friday the 20th, I had a phone follow up with a doctor at my primary care office. She was concerned that I was still having pain when breathing and was coughing and wanted me to go tothe ER to be evaluated. Walking into a hospital that is quarantined is a little intimidating. There is security at every door and you are escorted, in a mask, by a nurse into the ER. After several hours, bloodwork, an xray, and cultures I was sent home with the same answer I had had before. Everything looks normal, they probably nicked a nerve.

Over the last week I have had several doctors appointments. My GI (who I had a phone appointment with) is trying to manage my tube feeds but my body is not tolerating them, even at a very slow rate. We were hoping to get me off TPN but it doesn’t look like that will happen in the near future. I had another follow up with my primary care (also over the phone) and was told that the pain with breathing should improve over time. On Friday, the 27th I had my two week follow up with the ID doctor. She said that everything looks good and that I can safely stop my antibiotics. I will have another xray to check my breathing pain and one more set of blood cultures to triple check that the infection is gone.

Over the past week a lot has happened at home too. Mom has been deep cleaning and organizing. Dad has been busy building benches and other things out in the garage. My youngest sister moved back home. Two of my sisters painted over the hot pink in one of the bedrooms and she moved in there. This will give each of us our own side of the house and our own bathroom so that we aren’t in each others space so much. I got new baseboards in my room and had to paint a little. I completely rearranged my room, got a few new little pieces of furniture, and finally put on the new sheets and comforter I got for Christmas. My room looks totally different and I LOVE it! We have all spent time watching tv (dad and I started the Mandolorian) and hanging out trying to stay quarantined.

I am still having pain when I breathe and my energy has been super low over the last week. I have been fighting a bad headache/migraine for several days now and nothing seems to help. Overall, I am just notfeeling very well. I have a phone appointment with my primary care tomorrow but who knows how much help that will be. I am incredibly happy to be home and hope that I never have to endure another couple weeks like those again.

Stay Safe!