Infamous Kindred Hospital and So On Part 1

I was moved to Kindred Hospital in mid-March. As mentioned in the post before this one, Kindred Hospitals in general do not have a good reputation. Their facilities are a little outdated and resources somewhat limited. The first nurse I had encountered reaffirmed my preconceived fears because she was so rude and abrasive. She never told me what she was doing to me. I felt violated and of course she was reported so I got a new nurse and never had to deal with her again. I feel like sometimes when these nurses work for so long, they often forget that they're dealing with human beings and need to be more aware and compassionate. One of the first things you're taught in any medical field is to talk things through with the patient regardless of whether they are alert or not. There's something comforting about being talked through procedures when you're in a strange environment and unwell. Amazingly, people who pull out of comas can oftentimes recall conversations they've overheard or recognize the voices of those who cared for them and talked them through whatever was being done to them. Why is such a simple concept so easily forgotten?

I remember while on the ICU floor, the staff at Kindred spoke to me about a patient they had worked with years ago who came to them with the same disorder, except he was in a coma. He slowly recovered from GBS and became completely functional again. They reassured me that I would fully recover as well because I'm young and healthy. They told me to watch for symptoms that signified initial onset of recovery such as a burning feeling throughout the body and the sensation of pins and needles. Regardless of the prognosis of medical experts and their projected timeline for me, I was stubborn and wanted to believe otherwise. I repeated to myself that what had happened to me wasn't on the worst end of the GBS spectrum. I was going to recover a lot faster than a year. I'd be out before August. We all know how that went. Unfortunately, you can't quite put a timeline on GBS as it affects everyone so diversely. The consensus was that I would be at least 75% recovered by 1 year. Thankfully, I feel like I have surpassed that at 10 months.

I hated that they kept having me change rooms when I stayed at Kindred. It was such a nuisance because they have to transfer me with the bulky ventilator, bed, and bags upon bags of my belongings. It was an exhausting, aggravating, and nerve-racking experience each time. I was already sick and to constantly experience change wasn't something I appreciated. It was especially hard to accept the fact that the hospital was now home. The last room I stayed in had a nice view of the outdoors, but I only started to look out once my neck movement was regained. We had to open and close the blinds each day so I had a sense of time. I didn't see the outside of my room for at least a month or so. One of the most annoying things to me about GBS was the fact that I had developed sensitivity to noise. I don't know why it's a thing for people to come in and talk to me very loudly as if I'm deaf. I think the staff is probably used to dealing with older patients or something. It was just a funny quirk I noticed about a lot of people who came in. We had signs everywhere to remind people to keep their voices down, though few actually read it. We had bright YELLOW signs, white signs, wrote it all over the white boards...to no avail. I'd have to give a signal to my caregivers to remind the staff to lower their voices. Helloooo, I'm on a ventilator and can't talk, but I'm completely alert and my cognitive functions are completely intact. How does that translate to being deaf? Thankfully, that sensitivity went away with time. Another annoying thing about GBS is the amount of weight loss you experience from being bed-bound and only getting nutrients through a G-tube. I usually wear contacts, but had to use my glasses in the hospital and they kept slipping down from the weight loss, so people kept having to push them up for me so I could see. I was about 107 when I first checked into the hospital and at my lowest, as mentioned in my previous post, I was a mere 90 lbs. at 5'4". I looked like a twig and I've struggled with body image issues since high school where I felt immense pressure to constantly maintain a certain weight and look to make myself happy. A part of me kind of liked it, but a bigger part of me knew that wasn't right or healthy. I'm still working on my struggles because it isn't out of the norm for me to only eat one meal a day. It's not that I starve myself, I'm just never really hungry. Sometimes people don't realize that it's just as damaging to make comments to a naturally thin person. You know the notorious Freshman Fifteen once you're in college? Well, the opposite happened to me. I was my fittest and skinniest during college because of how active I was. Remarks in jest about my weight and needing to eat a burger were always laughed off, but I resented it and it only further fueled my battle with my image. It's amazing how cathartic it can be to write about your experiences. I don't think I've ever admitted or discussed my body image issues with anyone. Here it is for the world to see, wow. I think one of the most important things for me right now is to focus on being healthy, body and mind.

Shortly after being admitted, I was assigned a Speech Therapist who worked with me so that I could tolerate a speaking valve placed on my ventilator tubing. The first time I tried it, I crashed and nearly fainted from my oxygen saturation dropping so drastically. It had scared the both of us so much that he ended up taking the speaking valve off my goal list for a while. My days became pretty routine and mundane. During my stay, they would transfer me to a cardiac chair 5 times a week (picture below) in order to strengthen my lungs. Depending on the day, I could tolerate sitting up anywhere between 15 minutes - 1 hour. Sometimes it became too uncomfortable and painful for me to stay up. At Kindred, they are very passionate about weaning and it completely makes sense. Who wants to be stuck relying on a machine to breathe for the rest of their lives if it can be helped? They started to wean me off the ventilator the second week I was in the hospital and I did surprisingly well. It motivated me to push myself to go longer and longer without full assistance. I always had a pulse oximeter on my finger monitoring my oxygen saturation. It would go off from time to time when I was weaning, reminding me I had to take deeper breaths. The machine was very sensitive, so sometimes anything could set the pulse ox off and it would cause the ventilator to make a nasty screeching beeping sound that would alarm anyone. It would drive my dad nuts at night when he tried to sleep because my breathing was erratic when I slept. I would be knocked out due to the sleeping pills so I had no idea, but I know he always complained about the machine and how many times it would beep throughout the night.

The lungs are such amazing organs in the body. The primary muscle that drives breathing is the diaphragm, which wasn't functioning. It also aids with bodily functions. You really take these things for granted until you lose them because you're not aware of their abilities on a day to day basis since it's automatic. Your lungs are always trying to collapse from birth and your body's natural response is to keep them inflated through breathing. Contraction of the diaphragm serves to pull the bottom of the cavity the lung is enclosed in downward, thereby increasing volume while decreasing pressure. Since none of it was functioning properly, a ventilator had to manually inflate my lungs for me to keep them moving. I couldn't take anything by mouth because aspiration was a big possibility. The tracheostomy tube stayed in place with neck straps attached to the face plate of the tubing. It was so weird to go from being a self-proclaimed foodie (I'd try anything once and love to eat) to getting fed some beige colored mush through a G-tube. Once I had my tracheostomy tube and G-tube in, I stopped craving food altogether. I would spend my days watching so much TV or streaming because I was so limited as to what I could do as a quadriplegic. I watched a lot of food and reality shows. I also listened to some audio books to pass the time by. My lungs were constantly scanned to make sure everything was okay. I've had my blood drawn over 50 times by now and am glad my Phlebotomy license is of no use because I can no longer tolerate looking at needles much less having to stick someone. About a week after doing well with weaning, I ended up crashing and had to completely rely on the machine to breathe again. It was devastating and a complete kick to my morale. I was frustrated and couldn't understand why there was such a drastic change in stability when I was averaging 8-12 hours a day of minimal assistance with breathing.

My medication list could probably fill out an entire blank 8.5" x 11" piece of printing paper! I was on everything imaginable because my organs weren't functioning properly. I had to get vitamin supplements, high blood pressure medication, sleeping pills for the insomnia, occasional anxiety medication when the sleeping pills just didn't cut it, pain medication, etc. Luckily, everything was administered through my feeding tube. They started me on more IVIG treatments with an addition of steroids through an IV. Though I saw no immediate changes, I remained hopeful. They ended up switching me to a pill form of steroids and tapered me off of it completely because it wasn't working for me and the cons would outweigh the pros. I noticed my face had gained a little more plumpness and my appetite was jolted from using steroids. I had steadily started to gain more weight even though I was still on the feeding tube. My dad would comment on how much weight I had gained and I know it was a good thing and he had good intentions, but it made me feel a bit self-conscious because I hate the word in Vietnamese. There's no other word you could use to describe it in our language other than saying 'fat'. Hate that word.

Early on, Physical Therapy and Occupational Therapy was very limited focusing solely on passive range of motion to reduce my chances of getting contractures. Contractures, or the shortening and hardening of muscles, would further delay the recovery process. I wasn't physically capable of participating in the exercises. I was only able to observe and try to connect my brain with whatever extremities they were moving and in what way. I willed myself to move to no avail. That was particularly a nuisance when I wasn't in a comfortable position in bed and had to rely on others to help me. Can you imagine how many times I had to be repositioned in every which way to feel comfortable? And to have to convey that to whoever was present at the time through a whiteboard with letters on it as a means of communication was just the cherry on top. Bless everyone's heart who stuck by me and was patient. I had family and friends help with range of motion throughout the day, but in hindsight, I wish I would've asked for it more often. It is extremely important to keep everything moving. If you are a family member or friend of someone going through this, please continue to offer to do range of motion with your loved one even if he/she doesn't ask for it. Encourage it several times a day. It doesn't take much effort on your part and he/she will thank you in the long run for pushing him/her. Holding the position for at least 30 seconds 2-3x is enough as studies show that stretching in one position for more than a minute doesn't benefit you further.

Though the course of GBS was atypical for me, the recovery process was in line with what was to be expected. Some time in early April, the numbness was dissipating in my upper body and I noticed that burning sensation throughout my body like the nurses had mentioned and I started regaining movement in my neck and shoulders. I was able to shrug a little and move my neck side to side. Holding my head up posed to be a bit of a challenge, but it got easier with time. As I regained some movement, we placed the touch sensitive call light next to my head so I could tap on it for help instead of solely relying on my parents staring at me 24/7 in case I needed help for anything. Being on a ventilator always poses some risks. I ended up catching pneumonia in my right lung, which they caught and treated right away. The Yankauer suctioning tube became my best friend; it was always by my side. Some days I had to be suctioned every so often and others I had to be suctioned every minute through the mouth due to accumulation of saliva. That was such a hard job for my parents because they got no rest when I had my bad days. I appreciate them in a way I could never had I not gone through this because the amount of dedication they had is just amazing. I wouldn't have survived without their support because there is no way I could call to be suctioned every minute had I been alone. I would constantly have to get my tracheostomy suctioned as well and only the Respiratory Therapists or Nurses were cleared to perform the suctioning to clear out phlegm and whatever else was accumulating in my airways. Getting suctioned is disgusting and uncomfortable; the slurping sound is sure appetizing. It makes you gag, tear up, lose your breath, and makes the machine beep like crazy all at the same time. It always takes a little bit of time to recover after a deep suctioning, but it has to be done.