Hospital, Hospital, and More Hospital

This story begins at the beginning of last week and it hasn’t ended yet.

On March 1st I passed out (as I do) and as I fell my feeding tube got caught on my bed. This caused it to rip out of my abdomen and pop the balloon that holds it in place. After calling the on call doctor at my surgeon’s office I was instructed to head to the ER to get something put in, at least temporarily, to hold the tract and stoma (hole in the abdomen that the tube goes in) open. We headed to the ER and interventional radiology came to place a new tube. This was an extremely painful process and even though sedation was ordered I was not given anything. The tube was successfully placed and I was discharged home in quite a bit of pain.

Fast forward to the next morning. I woke up and the new tube, with the balloon still inflated, was lying in bed next to me. For those of you that don’t know, feeding tubes have a balloon that is located inside the body that is filled with water and prevents the tube from falling out. This particular balloon should hold 3 ml of water and only 1 ml of water had been put in! We once again called the surgeon’s office and as so much time had passed and my stoma had begun to close, once again, interventional radiology needed to be the one to replace the tube. Salem’s radiology department could get me in much faster than Portland’s (where my surgeon is) so it was back to interventional radiology we went.

On March 3rd I checked in for my procedure and found out the I would have THE SAME DOCTOR that had placed my tube with no sedation and not enough water two days earlier. He reassured me that I would be given sedation this time and apologized about what had occurred with the previous placement. I was taken to the procedure room and as things moved along I waited for the sedation to take effect. After the nurse had apparently given me THREE doses of sedation medication I was no more sedated than I had been before. Unfortunately, I was maxed out on meds and there was nothing more they could do. This meant that my tube had to be replaced, with an almost closed stoma, with only the help of lidocaine. Needless to say, this was an extremely painful and traumatic experience once again.

By Friday the 6th I was still in a lot of pain. Once again this warranted a trip to the ER to check my tube. I was given pain medication and an x-ray was done to check the placement of the tube. The x-ray came back and showed that my tube was in fact properly placed and that it was going in the right direction in my intestine. It was concluded that the pain was simply my body’s response to all the trauma of the previous week and that with time it should get better.

Friday night I got the best gift I have been given in a long time. Frozen the musical was at Keller Auditorium in Portland and I really wanted to go. I had been planning on buying the cheapest tickets and going with my mom. Earlier in the week I had remembered that some family friends have season tickets to the Keller. We had reached out and asked if they were planning on using their Frozen tickets and if not could we buy them. On Friday night my mom got a text saying that we could have the tickets and that they were a gift. This was incredibly gracious and I tried hard to pay for them but was told over and over that this was a God thing and I was meant to have them. The biggest piece of information was that the show was on Saturday, as in the next day!

On Saturday, mom and I drove to Portland for the show. When we arrived we discovered that we had great seats. As always with Broadway shows it was INCREDIBLE!! The actors were wonderful and the singing was amazing. The costumes were beautiful and the Olaf puppet costume was creative and perfect. By intermission I was blown away, and then we got to watch a whole second half. I am so incredibly grateful for the gift of those tickets and it was a much needed bright spot in what had been an otherwise very difficult week.

On Sunday I didn’t feel very well. I thought maybe it was a bad POTS day as the previous week had taken a lot of energy. By the late afternoon I was running a 101 fever and feeling even worse. I took some Tylenol and we decided that I would go to the doctor on Monday. The doctors clinic informed us that because I had had a procedure the previous week and was running a fever I needed to go the the ER once again.

On Monday afternoon I went to the ER and after waiting a while was taken to a room. The doctor decided that we needed to run a flu swab and some blood work to check for an infection. Everything came back fine and the doctor ordered blood cultures to make sure that my central line wasn’t infected. I hadn’t even thought about my line being infected and was now worried that this might be the case. Blood cultures take several days to process and we were told we would be called with the results. The doctor said he was pretty sure I just had a virus and would get better with time.

On Tuesday afternoon I got a call from a nurse in the ER. After less than 24 hours my cultures had come back positive for infection. She told me that I needed to return to the ER for repeat cultures to make sure that the first cultures were not positive because of contamination. After mom got home from work we headed to the ER. After waiting for quite some time I was taken to a room. As we were taken to the room I was excited to see that my favorite ER doc (I know that sounds ridiculous but he is so great) was working and would be my doctor. After discussing things it was determined that I needed repeat cultures done and needed to be started on IV antibiotics right away. Due to the fact that my line was presumed infected it was deemed unusable which meant I would need to be admitted to receive the necessary medication through an IV.

A little after midnight Wednesday morning I was finally taken to an inpatient room. I was hooked up to heart monitors and started on a heavy duty IV antibiotic. Mom ran home and got me some necessary hospital survival items (toothbrush, pajama shorts, grippy socks, my Kindle, chargers and other things to pass the time). She came back to drop things off and a little while later headed home to get at least a few hours sleep before she had to go to work the following morning. I was reminded again that I am incredibly lucky to have such supportive parents that are with me through this journey.

The following day the infectious disease (ID) doctor (who manages line infections) came to see me and share what the plan was. My cultures from the ER came back positive for bacteria once again so this was a true case of bacteremia. She told me that as my central line was the likely culprit it needed to be pulled. She also told me that I would have to have negative cultures for at least 48 hours in order to get a new line so that I could be discharged and do the rest of my IV antibiotics at home. Later I met the hospitalist and she agreed that the first thing we needed to do was pull the line and culture it.

Another issue that has come up is nutrition. I was on TPN, which can only be run through a central line. I cannot get enough nutrition through my feeding tube but we are slowly working on increasing the rate. This means that I was getting hardly any nutrition. As a result we have started PPN which is similar to TPN but can be run through a non-central line. With all these IV meds and IV nutrition I require a good IV. Unfortunately, I have now gone through FIVE IVs in the last 3 days as they keep blowing. Earlier today they placed a mid-line which is between an IV and a central line. The hope is that because this is a line in a bigger vein it won’t blow.

Now it is Friday afternoon and I am still sitting here in the hospital. The ID doctor was by this morning and said that my cultures from 2 days ago are still growing bacteria despite me being on antibiotics. This could mean a few things. 1. The infection is more aggressive and will take longer to clear, 2. The infection is also in my feeding tube or the surrounding tissue, or 3.The infection has seeded into my heart and will require more intensive treatment. A little while ago they did a CT scan to check my abdomen for infection. If it comes back negative and my cultures continue to be positive through the weekend then we will do a scan of my heart to make sure the infection is not there. If it comes back positive they will pull my tube and do what is necessary to clear out the abdominal infection.

I am physically feeling OK with minimal pain and nausea. The nurses have been wonderful and I have had a few visitors to help make the time go by faster. I am however getting quite tired of being here and the knowledge that I will be here at least three more days is not helping. Hopefully the infection begins to clear over the weekend and I will get to go home early next week. I will try to provide an update at some point next week.