I am currently sitting in Sherrin’s hospital room at St. Barnabas Hospital in Livingston, New Jersey. Sherrin has been at this hospital a handful of times now- this time it’s because her liver is acting up. For the past few weeks, Sherrin’s liver has not been processing and digesting food and liquid as much as it should. This is dangerous because this can cause a backup of substances in her system, causing her extreme cramping and pain, and an abundance of bacteria growing, basically not good. JDT, her usual rehab center where she lives, does not take care of medical issues, hence why we had to admit Sherrin to the ER at St. Barnabas, then the ICU, and now EEG ward. She has been here since this past Tuesday and hopefully will get released come Monday or Tuesday after a few more tests are run.
Because her liver isn’t working properly, we have not been able to give Sherrin her regular meals. She is only being fed through her G-tube in her stomach throughout the night with occasional ice chips so that she doesn’t completely forget how to eat. When we have a set back like this, it play a huge role in her progress. I can’t stress this enough. She has been acting extremely puny, lethargic, and spacey for about two weeks now because of her liver. When she acts like this, it is extremely difficult to get her to go therapy and do well. I will ask her, “Hey Sherrin, name our street address,” and she will just look at me and barely move her lips without actually speaking to respond. It’s heartbreaking. Every single day she’s too tired or in too much pain to do well in therapy is another day that she doesn’t get better, which we cannot afford anymore.
This all comes with territory of being mentally handicapped. The human body isn’t meant to be in the state of mind that my sister’s is in currently. It can only be somewhat sedentary for short periods of time before other things start going wrong. I knew that this was going to happen eventually. One of the few things I knew about mentally handicapped people before any of this happened was that once something this serious happens, it causes a rippling effect of other injuries. It’s things you don’t really expect, like her liver, the UTIs, thrush, bed sores… you name it.
We have been living the hospital life for about a year and a half now (still cannot believe it’s been this long) and it’s shortly coming to a close. My dad wants Sherrin to come home by Christmas time, which sounds great but is so much more than just bringing her home. We are faced with two options: the first is to get a new house. My house is simply not handicapped friendly: it is full of stairs and narrow entryways. Though we did get our basement remodeled about a year ago so that it is handicapped accessible, we need more than that. We need more ramps, lifts, and maybe even an elevator. My mom doesn’t want Sherrin to just be quarantined in the basement, she wants her to be able to get into the kitchen, watch TV in the living room, and sleep in her own bedroom on the second floor of our house. In certain ways it makes sense to just move to a ranch-style home that would be close to where her future outpatient therapy center.
Our other option is to renovate our home completely. For Sherrin’s mental state, it would be relaxing for her to be able to return our home and try to pick up where we left off and be in an environment in which Sherrin knows and is comfortable. We are considering making our garage entrance the main entrance for Sherrin so that she has enough space to get in and out of the house. This would mean we would basically have to knock out a wall from our dining room that sits next to the garage and put in a ramp there. We would also have to get an elevator installed so that it fits not only Sherirn but her wheelchair as well (the wheelchair itself is about 50 lbs and 5 feet in diameter- way too big to make it up our stairwells). The other option would to get a specialized lift that her wheelchair could hook onto via the wall that takes her up and down the flights of stairs. Either way, it’s going to be a big change.
That’s not the end of it. Now we have to focus on training us as a family to be her caregivers and getting fulltime help. It’s going to be mostly my mom’s help that is going to save Sherrin since I am still in school in my senior year of college and my dad still works fulltime. This is a daunting task. My mom is scared for things that could happen when no one else is around. What if there is a blizzard and the electricity goes out but Sherrin needs to be rushed to the hospital? What do we do? Then brings up the issue of back up generators… another issue. There are so many things that people don’t realize when we say that Sherrin may come home soon, scenarios we have yet to think through that could be extremely dangerous.
I hate to repeat myself, but if you consider yourself a friend of Sherrin’s, you need to visit her. Sherrin is only either with my mom, dad, or me 99% of the time. She begs for her friends to visit, asks me why no one comes by anymore, and what her friends are doing. It breaks my heart that people have stopped contacting me as much and don’t ask me about her progress anymore. She is still there, guys! Please, visit her. Make the time to see your friend that needs you. Please.