If you read my last few posts, you know that my stay here has been rather frustrating. And overwhelming. And exhausting. And after my last post on my spooniversary things got worse. But then they got a little better and opened up a brand new career path for me.
So I came to the hospital because I couldn’t tolerate my tube feeds and I couldn’t get enough calories to keep myself alive and well. I knew tube feeds weren’t working for me. My family doctor knew tube feeds weren’t working for me. My GI knew tube feeds weren’t working for me. Unfortunately, not everyone here was familiar with me and my case and thus not everyone here believed that tube feeds weren’t working for me.
This resulted in no plan until one of two conclusions was reached. One: we would try to push my tube feeds back up to a high enough rate to meet my caloric needs and I would once again be able to tolerate this so I could go home TPN free. Two: we would try to push my tube feeds back up to a high enough rate to meet my caloric needs and I would once again fail and need to continue supplementing with TPN.
I’m still in the hospital so you can probably guess which way that scenario played out.
I failed. Again. The week before Thanksgiving and Thanksgiving weekend itself was awful. Absolutely awful. I was so sick I could barely even carry a conversation or get out of bed, but my doctors wanted me to try and tough it out so I felt like I had no choice to but to keep with it. Despite how sick I was I asked my GI to let me go home. I figured that if I was just going to be left to feel absolutely miserable on tube feeds then I would rather do so at home than in the hospital. My request was denied, much to my mother’s relief. He told me that if I went home I would starve to death and yet I still proceeded to beg, plead and pout to try and get myself discharged.
Besides feeling physically terrible, I felt emotionally terrible because I was giving it my all and doing my best to be tough yet my toughest just wasn’t enough. I felt like a failure, but instead of my body failing me it seemed as if I was failing on a personal level. I felt like I wasn’t a strong enough person, as if everyone else could manage to keep themselves alive but I was somehow missing the simple skills to do so. As I said, it was just all around awful.
And then, thankfully, things turned around.
It finally became obvious to the doctors and staff here that tube feeds really don’t work for me right now. I failed, but I didn’t fail on a personal level, rather on a physiological one. I was discouraged, of course, but was relieved when my GI said okay no more failing. Everyone watched me miserably try to do things their way and fail, so now everyone is on the same page. While TPN is not an ideal scenario, it is part of my current reality. In conjunction with low rate tube feeds and oral meds to keep the nausea at a tolerable level, I’m going to need to run TPN at home for a while.
Unfortunately, anyone in British Columbia or the Yukon who requires home TPN must go through a training program at St. Paul’s Hospital in Vancouver. While this training program is a good idea and I’m sure a great way to ensure that patients minimize the risks and complications associated with TPN, the wait list is long. Very long. No one can tell me for sure just how long. The website says one to two weeks for the application to be reviewed followed by a two to four week wait to start the program, but I’m not sure how old that information is. My dietitian says her last referral waited two months. My GI says his last referral waited one month but he felt that was an excessively long wait. Basically, no one has any idea other than “it could be a long time…”
The final paperwork for my application was completed by my GI and faxed over to St. Paul’s late Friday afternoon, so I am counting today, Monday, as day one of my wait. (Don’t get me started on how frustrating it is that day 21 of my hospitalization is day one of my wait.)
All this brings me to my new career choice: lady in waiting. I did a little research about what ladies in waiting actually did and I’ve decided that the only part of the job description I like is the title itself, so I’m keeping the title, ditching the servant duties, and adding crocheting as a non-negotiable required skill.
While I am thrilled to have found myself a new career (I don’t even need a university degree!), all jokes aside I’m sure you can understand that I just want to go home. I could list all the reasons I want to go home and all the things I miss (and I sometimes do), but in the end that’s not going to change the reality that all I can do right now is wait. And thinking about all the places I would rather be and all the things I would rather do is not going to make the wait any easier. We all have to do things we don’t like and that’s just part of life.
If I have to wait in the hospital for a long time, I am happy to be here on 3N where I can honestly say that I have liked every single nurse I have come across. I don’t want to be here but I really don’t have a choice. So I’m just going to wait and I’m going to do my best to do so with patience. I’m just going to wait and I’m going to do my best to make my wait a positive experience for the nurses and staff involved in my care. After all, I am a lady in waiting.
Here’s a picture of me excelling in my new career:
P.S. Since several people have asked me about TPN and the home program and how it all works, if anyone would like a little more information here is the link to the program website:
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