This is hell.

*****PLEASE CHECK OUT THE NEW PAYPAL LINK UNDER “DONATE TO SHERRIN”*****

As November comes to an end and December begins, our journey through hospital life is slowly coming to an end. The hospital is aiming for Sherrin to be discharged sometime in mid

Dad, Mom, Me, and Sherrin on Thanksgiving 2013.

Dad, Mom, Me, and Sherrin on Thanksgiving 2013.

December. This is great for certain reasons. Sherrin will finally be able to return to our home in which she has not seen since May 12, 2012 and has been begging for every single day. It’s cruel to keep someone in the hospital for this long. Sherrin will finally be convenient for friends and family to come see her and she can be somewhere where she’s comfortable. It’s also easier on the three of us too. My dad will no longer have to commute to NJ every weekend, I can see my family more than 1-2 times a month, and mom will no longer be alone with Sherrin during every week working herself into the ground. It’s exhausting to do what she does without hardly any help during the week and now my dad and I can help 10x more often. Not to mention it’ll be a weight off our shoulders not to be paying for the extra apartment in NJ any longer. Overall, coming home is going to allow us to work as a family more since we will be reunited under one roof.

However, what people don’t realize is that Sherrin being discharged from the hospital isn’t completely positive. It kind of symbolizes that the doctors can’t do much more on their end. To hospitals, patients are just people taking up space and when one patient isn’t progressing fast enough, then that patient must leave to give up their spot for someone else that may have a chance. It’s a hard reality to accept. Every component of Sherrin’s health now relies on the family. This will be an exhausting obstacle to overcome, especially for my mom since she will be the one that will be with Sherrin 24/7 since my dad works in the day and I am in school in DC. I will start commuting to our home in Ashburn several times a week to help with Sherrin and my dad will be there after work every day. Not having the luxury of the hospital staff (did I just call a hospital a luxury?) being on call throughout the days and nights will be hard to get used to; whenever we need help to change Sherrin’s diaper we could call a nursing aid to help or ask the nurse to bring us medicine. Unless we get a live-in nurse, we have to do this all on our own. With Sherrin, it’s like having a newborn baby that needs attending to all through the day and night.

Health wise, we’ve had a lot of issues with Sherrin lately. About a week and a half ago, Sherrin landed back at St. Barnabas Hospital (a medical hospital abut 10 miles away from Sherrin’s rehab center that she has to get transferred to when she gets sick since the rehab center cannot take care of medical problems) due to several health concerns. She had three issues: 1) muscle breakdowns in her legs due to casting that was supposed to help her muscles get used to being in a normal position; 2) C. Diff (Clostridium difficile), a bacteria that grows in your intestines and causes severe abdominal pain; 3) ileus, a cause of the C. Diff that blocks the intestines from moving food through the digestive tract. After about 5 days at St. Barnabas, these issues mostly cleared up and Sherrin was released on Thanksgiving Day to head back to her rehab center.

When Sherrin is sick like this, though, she gets really weak and things such as swallowing become a huge issue. Her throat muscles get really tired and don’t work how an average person’s would. Basically, we can’t put anything in her mouth because she cannot swallow it properly or spit it out. However, last Tuesday, I went up to New Jersey to start my Thanksgiving holiday (a drive that normally takes 4.5 hours ended up taking over 7 due to holiday traffic) and stayed with Sherrin at St. Barnabas that night (we always have either my mom, dad, or me stay with her when she isn’t with our usual staff). It was roughly 11 PM when I was fully in charge of Sherrin and her nurse came in to give her medications. One of her medicines included her oral medicine that we normally dip a swab into the liquid and then rub it along Sherrin’s tongue. The nurse insisted that it was doctor’s orders for Sherrin to take a swig of the medicine, swish it in her mouth, and spit it out. I was hesitant at this for a moment since I knew Sherrin couldn’t handle spitting it out but the nurse claimed that she had been doing so for the past few days that she was at St. Barnabas. I agreed to this since it was late and I just wanted Sherrin to go to bed as soon as possible. The second that the nurse gave Sherrin her medicine Sherrin inhaled it and immediately started choking on it. Her face turned a dark shade of purple and was gasping for air. We immediately turned her on her side so that she could spit it out easier, but Sherrin continued to cough endlessly for about 2 more hours. At around 1:30 AM, she began to calm down and the coughing fits only happened every 10 minutes or so. I was hysterical. Each time she tried to cough out the medicine it sounded like she was being strangled and I would rush to her side to help suction the medicine out… but nothing seemed to work. Sherrin was exhausted and only slept for about 5 minutes at a time before being woken up by the choking. By about 3 AM, I called in the nurse several more times and insisted that there had to be something more we could do to get the medicine out. She continued to claim Sherrin was fine and would be able to get the medicine out on her own. I didn’t want to call my parents because I wanted them to rest—they never get to rest and I thought I could handle this responsibility. 6 AM rolls by and Sherrin and I still had not slept at all. Finally, I called my mom hysterically and told her what had happened. She immediately ordered a chest X-Ray to be done on Sherrin to see if the medicine went into her lungs, which could be extremely dangerous because if liquid entered her lungs then she could develop pneumonia. My mom came to meet me at the hospital at around 8 AM and shortly Sherrin calmed down and fell asleep. The X-Ray showed that nothing was in her lungs and that she had probably coughed it all out by then.

There was no permanent damage, thank god, but it was scary to say the least. I haven’t spent a full night with Sherrin in probably over a year so it’s hard for me to stay on top of everything. My parents won’t let me take the blame for this episode, but I can’t help but feel guilty for allowing the nurse to do such a thing when I should have known better. This is basically proof that I can’t assume things with Sherrin; I have to know exactly what is going on and constantly check in with my parents. It is so scary how one little thing can affect her so much.

This is partially why I have mixed feelings with Sherrin coming home. A positive would be that Sherrin would be with family all of the time, people that know her and know exactly what medicines she can handle. We wouldn’t have to worry about new nurses coming in and making errors. A negative is that it is only just us—we don’t have a doctor in the building 24/7 who can deliver chest X-Rays at anytime of the day. If this were to happen at home, we would have to rush Sherrin to the hospital to get the proper care. Episodes like this scare the living crap out of me. What we would do if this happened under our watch and we didn’t have medical professionals nearby?

Sherrin's van

Sherrin’s van

But, it is inhumane to keep my sister in the hospital this long. She needs to come home to feel alive again. The doctors are aiming for sometime in the next few weeks and my house is undergoing so many renovations in preparation. We have added two wheelchair lifts in the house so that she can get up and down stairs and a small gym area in the basement equipped physical therapy mats, rotating hospital bed, and a Hoyer lift. We have also officially purchased Sherrin’s wheelchair van, a

Lift into van

Lift into van

Town and Country van that has an automatic ramp to lift Sherrin into the vehicle. I would like to give a huge shout out to everyone that donated this year to Sherrin to help with the finances of this purchase. Thank you with all of my heart. These renovations are extremely expensive to say the least, but we have to make do. My sister’s life is worthy every damn penny and my family and I will do whatever it takes to keep her happy and healthy.

Wheelchair lift in my house leading from basement to main level.

Wheelchair lift in my house leading from basement to main level.

As for Thanksgiving, like any other holiday we’ve spent in the hospital, it was quiet, especially since she was being transported back to the rehab center in the early afternoon. I came in early that morning to watch the Macy’s Thanksgiving Day Parade with Sherrin since it was always a tradition for us. But since she was still exhausted from the coughing fiasco two nights before, she slept through most of it. As for dinner, it was just us 4 in Sherrin’s hospital room. Since no one has the strength to prepare a full Thanksgiving meal, I went to the local deli and picked up some turkey, stuffing, green beans, and yams for my mom, dad, and me. Sherrin wasn’t strong enough to eat with her mouth so she was given her liquid food through her stomach. Hopefully, this will be the last Thanksgiving where she can’t at least taste traditional Thanksgiving food. As soon as we pulled out the food and set it up on a table in her room, Sherrin stared at the food and asked if she could have a bite. We use this as motivation for her. We say things like, “In order to try this food, Sher, you have to get stronger. You have to do better in therapy to have this. Do you think you can do that?” She always responds with a quiet, “Yup,” and smiles.

Sometimes I feel like the old Sherrin is just waiting somewhere, like she’s just on a really long vacation and is going to be home soon. Her teasing laugh when I tell her I did something embarrassing, her shouting “KACI!!!” when she wants to ask me something, her beautiful smile with her tongue sticking out when she’s really happy are all going to happen again one day– I’m going to hear the voice of my big sister soon. I forget that the days where I would be sitting on the living room couch, hear Sherrin come downstairs, eat raisin bread while watching a Johnny Depp movie with me, and yell at each other for stealing one another’s clothes could all be gone. As you’re growing up, you don’t think that the days you have with your sibling could be numbered. You just go through each day trying not to fight with them over every little thing and still have someone to watch TV with. It’s so hard for me to accept that the future I had pictured my entire life is now distorted. I wanted my big sister to fall in love, get married, and have children one day. I wanted my future children to have cousins to play with and an aunt to visit during the holidays. Sherrin never deserved to have these things taken away from her. Life is just so unfair. The fact that these precious life moments could never happen brings so much pain to me. When people tell me that I should turn to God to get me through this, I just can’t. I could never believe that a god would do this to my sister and my family. What did we do wrong to deserve this? Why us? Why do my parents have to work themselves into the ground to take care of my sister every single day? Why is my life shattered? This experience is no way shape or form positive; we have gained nothing from this, only tears, pain, and a lot of aging. I hate this life. I hate it I hate it I hate. This isn’t a learning experience. This is hell. All I want is for life to go back to the way it was, but it never will. I can only have hope that this new chapter of Sherrin coming home from the hospital will lead to positive outcomes. I can only hope that the moment she comes into our house, she will want to try harder, that she will want to fight to get her body back. This is a lifelong situation that we are in and I cannot manage if the way things are going now continue forever. She needs to improve and she has such a ways to go. I’m fighting for you Sherrin, I really am. I will never give up on my sister. Period. This is my moral duty to save her, but sometimes everything catches up to you and you feel like you’re drowning. The only thing that keeps me going is when Sherrin gives me a smile out of nowhere and tells me that she loves me in her quiet whisper of a voice. That’s enough for me to fight to the grave to save her. We’re pulling for you Sherrin. You got this.

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3 Responses to This is hell.

  1. Amy says:

    That error was NOT your fault Kaci! It was a result of that horrible nurses “I know everything” self. She should have taken to account what you were sayin and even if she thought Sherrin could do it to appease you why not just swab it! It’s a crazy world out there and I’ve been hearing so many horror stories about nurses! I’m so sorry for all you and your family have been through especially with these nurses. All of your stories and others make me strive to NEVER EVER be like that! Thinking about you guys!

    Amy

  2. I love you I love you I love you Kaci Baggott :*

  3. Your strength and good heart are amazing

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