I forget at what point in time it happened, but I recall having to cut my hair and I had a hard time dealing with that. I love my long hair and who isn't a little vain? I find it a bit amusing now, looking back, that I had more anxiety about cutting my hair than the actual progression of Guillain-Barre Syndrome! I think it was while I was still at UC Irvine Medical that my friend, Hieu, just couldn't seem to brush the knots out of my hair no matter how hard he tried. The nurse ended up cutting out whatever mess she could and my friend, Spencer, had his hair stylist mom come in to even out my hair. My friends are basically family and their families also treat me as such; she came in a few other times to give my hair a good wash and even brought in purple shampoo for me since I had blonde hair and it helps keep the brassiness from occurring.
Speaking of hygiene, at Kindred Hospital, you're limited to one of those shower caps or a quick wash if time permits the CNAs or LVNs to do so for your hair. Luckily for me, my mom and one of my sisters would wash my hair for me every 2-3 days. We had a good system going where they pulled me upwards so my head hung off the bed to get a good wash in. One of them would then blow dry my hair afterwards because I hate wet hair. My hair was always up in a ponytail or bun so that it'd be out of the way. Since my mom took the morning shift to care for me, she helped wash my face every day when I woke up before putting my glasses on so I can see. Oral hygiene was up to the Respiratory Therapists every night and consisted of light brushing with a sponge tool attached to the suctioning tubing and dipped in what was essentially mouthwash to help keep my mouth healthy. This was very important because I had braces at the time and they kept cutting the inside of my mouth even though I had no real use of it. My Orthodontist was kind enough to come visit a couple of times to see how I was doing and when he finally received the okay from the facility, he removed my braces at the hospital so I had one less thing to worry about. I received a bed bath every other day. Sometimes I would get very lucky and get a CNA or LVN that had enough time to give me a really good washing with real body wash and a lot of water. It's amazing how dedicated and passionate some of them are when it comes to their jobs. Some of them would bring in brand named body washes, deodorant sprays, lotions, etc. as an option for patients and it came out of their own pockets. It warms my heart to see how much they care, down to the very minute details. Rey was one of my favorite LVNs because he was one of the few that spent the time to really shower his patients. Everyone is bed-ridden at that facility so it takes a bit of time to wash someone who is stuck in bed much less completely paralyzed on top of that. Those who work with him have nothing but positive things to say about him, which speaks volumes about his character. (If you're reading this Rey, I haven't forgotten that I owe you a banana creme pie! I will make it for you, I promise!) In the grand scheme of things, it seems like no big deal, but him spending that little bit of extra time made me extremely happy, which made all the difference in the world in terms of recovering. It gave me motivation to keep working hard and kept me happy. My dad took over caring for me in the evening, so he'd wipe my face with a face wipe and remove my glasses for me before bedtime. Never in a million years did I ever think I would be so completely dependent upon others in such a way.
A quick shout out to all the CNAs that I have bonded with during my stay at Kindred. Some of them are extremely compassionate, loving people. One particular CNA that stood out was Mia (there are others that I absolutely love, but I just can't recall their names at the moment). She just had such a positive aura and no matter how many times I had to call her on my worst days, she showed up with a positive attitude whether it was to change me or adjust me. She took the time to pat my back when I was on my side because it was good for the lungs. She never made me feel ashamed of my bodily functions or gave me crap for wanting to be turned before the 2 hours and always showed up as quickly as she could. Words cannot express how grateful I am and how amazing of a person she is. I can't wait to go out with her soon and show her that I am walking now because I visited in mid-December and was still in a wheelchair.
Once I started regaining feeling and movement in my shoulders in early April, my awesome Speech Therapist, Tim, felt like I was okay to start trying out the speaking valve again for short periods of time. I'd see him a few times a week and in addition to voice exercises, we would work on tongue exercises, practicing swallowing, etc. since my muscles were weakened from lack of usage due to paralysis. He taught me to over-exaggerate my enunciation and pronunciation of things in order for people to understand what I was saying regardless of having a speaking valve attached. It made communication a lot easier, especially for those who could read lips! The speaking valve couldn't stay on for too long because it dries out the airways and causes blood clots to form, which has to be deep suctioned out. Having to focus on breathing and having the speaking valve on was quite a challenge. Once the speaking valve is attached, the ventilator doesn't register things as accurately so it can be dangerous if one isn't truly stable. I had to remember to take deep breaths to keep my oxygen saturation at a normal level and to keep my lungs properly inflated when I was weaning and had the speaking valve attached. It's really hard work having to think about breathing and making myself do so when all my life, it was something automatic. It was extremely tiring trying to repeat certain letters and words starting with those letters Tim wanted me to pronounce during our sessions. My lungs were weak and it took a lot of energy to try and speak. Sometimes my voice came out very soft, so it was hard for people to hear what I was trying to say. As time went on, my lungs and vocal chords got stronger, so I was able to speak more clearly and speak for a longer period of time. It was so weird to hear my own voice again after not being able to speak for a month or so! It sounded different to me even though family and friends said it sounded like my normal speaking voice. The day finally came in May where I was confident enough to perform the swallowing test with different textured foods like a soft cookie, pudding, water, etc. They recorded me during the test to see where the food was going and determined I was ready to eat soft foods on the ventilator. The speaking valve was essential in order to eat for swallowing purposes. I had really high hopes for my first real meal, but was extremely disappointed when that day came because my taste buds weren't the same and it was exhausting having to chew and swallow food. Who knew it was so much work to sit up and eat something as easy as mashed potatoes?! I think I cried because I was so disappointed since I generally love food and was so looking forward to eating again. My taste buds did eventually wake up and eating got easier and less tiring. I am truly thankful for having the pleasure of working with Tim. I know it was a great change in pace for him because my outlook was positive and I was probably his youngest patient. He always showed up with a positive attitude and it really helped push me to wean off the ventilator faster. He had great expectations and motivated me to make a full recovery. Thank you for all you do and all that you will continue to do for people. You are amazing and now you're going to have to teach me how to surf!
I had some pretty amazing Respiratory Therapists, most notably Kalvin, Paul, Tony, and Victor. Kalvin and Paul were morning shift therapists who pushed to wean me off the ventilator as quickly but safely as possible. They encouraged me to not rely on the ventilator more so than others, who as soon as I said I was tired, would just let me off the hook and put me back on full support mode. Tony and Victor were night shift therapists who were patient and kind. I would have to get deep suctioned many times during their shifts because I would go longer and longer with the speaking valve on since I could tolerate it, which really dried up my airways. The blood clots that inevitably formed caused a heaviness in my chest and difficulty breathing, but a few deep suctionings throughout the night resolved all that. Just writing about this astounds me. What some people such as myself have to go through to recover is just unbelievable at times. I recall having a difficult time weaning, especially at night because I didn't want to not be on full support while sleeping. I wasn't comfortable with not being in control, which probably contributed to my insomnia. I was constantly anxious about my breathing when asleep, so I was prescribed Xanax to help me relax in addition to the TWO sleeping pills I was on (Ambien and Restoril). The machine would go off like crazy during the night unbeknownst to me due to my sporadic breathing while not on full support. My dad had many months of sleepless nights in that hospital. I felt so bad for him because he rested on a makeshift bed of three chairs put together. I constantly worried about family and friends and felt bad for them and didn't like 'bothering' them with my needs, but I also knew I shouldn't feel guilty because my condition was out of my control. For many months, I would knock out after 15 minutes of my sleeping pills being administered around 11 PM and I would wake up at 12 PM. I never remembered anything that happened between those times, but I've heard accounts of me asking for things and waking up in the middle of the night. I also didn't dream; it was all just a blank. I don't remember the name of the Respiratory Therapist who suggested a slower method of weaning me off the ventilator to the doctor because he didn't work with me often, but what he suggested worked for me. They basically started acclimating me to a new setting that was a little lower than full support and having that become my new baseline to sleep through, before lowering the settings again every few days and so forth. By early May, I was on T-bar and off the ventilator. Paul tried removing my trach on May 10th, but it wasn't giving because a little bit of skin had healed over it making it difficult to remove without hurting me. He consulted with my Pulmonologist, who came in and sprayed my neck with a little bit of numbing spray and yanked it right out with no problems. Of course he had my permission and I was fully aware of what he was doing. It was a bit bloody and he had left the trach on my bed right next to me without notifying the RT about what he did. The look on Paul's face when he walked in on the aftermath was priceless. He went white in the face and was so surprised by it all that he freaked out a little and had to walk out to compose himself before calmly returning. I was completely stable, though I had a gaping hole in my neck that was a little sore. He promptly helped tape it up and it closed up and healed very well over the next few days. I did have some complications with breathing after still and had to be on bronchodilators to open up the airways to make breathing easier. In addition to that, the Pulmonologist ordered a CPT machine with vest for me. This high frequency chest wall oscillation machine's vibrations help break down and separate mucus from airway walls and move it up into the large airways to be coughed up. It would shake me for a good 20 minutes. Some days, I would also require oxygen.
I thought regaining feeling would be the best thing ever, but it felt worse than losing it in the first place. That internal burning feeling they talked about? Yup. Had that. To top that off, once the nerves started waking up, I had a never ending sensation of pins and needles, except it was magnified. It was extremely uncomfortable and I wished that I could just crawl out of my own body until that subsided. I also started experiencing nerve pain, which was supposed to be relieved by Gabapentin, but it didn't help. The doctor switched me over to Lyrica to see if the results would be better, but it was the same and I even started experiencing double vision, so I was switched back to a higher dose of Gabapentin. The constant jolts and zaps that traversed within my body caused me to twitch. Norco became a constant staple every 4 hours when I couldn't stand the pain any longer. It got so bad that I was asking for more pain medication before it was even time to take it. It wasn't that I was addicted to it as a lot of people experience with such narcotics, but I was in a lot of pain. Since I could feel again, I also started to feel itchy. People would constantly have to scratch my itches for me. Stretching became extremely painful and my range of motion became limited. Sometimes I secretly wished that I had died instead because regaining sensation was THAT awful for me. I was never comfortable.
My Occupational Therapist, Cielo, was extremely sweet and always pushed me to work my hardest and to try to connect my mind and nerves to the activity being done. She concentrated on my arms and hands and tried to figure out what devices could make me a little more independent. My Physical Therapists, Pam, Michael, and Erika were an absolute pleasure to work with as well. They pushed me too and were always very encouraging. Towards the end of my stay at the facility, we were switching between passive range of motion days with my legs and head exercises and days where I was strapped to a tilting table to practice weight bearing on my feet. My blood pressure had to be monitored closely when the tilt table was in use because it would shoot up really high. Sometimes I would also experience nausea and dizziness due to being in an upright position, which I hadn't experienced being in for a few months. Some time at the end of April, I was fitted for a powered wheel-chair that could be controlled using my head. They sent a sample one to the facility for me to use for a short time to test it out and that was the first time I left my room to go outside. My perception was out of whack from being cooped up in a room all day every day. I couldn't see far down the hall. It was really blurry for me even though I had my glasses on. It took some time for my eyes to adjust to seeing further distances without that effect. I would look out the window a lot more because I was able to move my neck and lift it a little. I would watch the cars drive by and families enjoying picnics and spending time with their loved ones out on the huge lawn right in front of my window. It made me so happy to be able to go outside after many months of being indoors. The warmth of the sun on my skin, the cool breeze of the wind, the vivid colors of cars and mother nature, and the sounds of the trees rustling and birds chirping made me so happy. It was like I was a child again experiencing all these sights and sounds for the first time. My sense of appreciation for life was amplified that day. I was also regaining movement of my fingers a little at the end of April, which had me even more excited. I wasn't able to go out that many more times because they had to take the wheelchair away since it was just a sample. There was an issue with the company they were working with the get me the powered wheelchair and it ended up never working out.
Although Kindred itself is an outdated place and can be improved upon, the majority of people I encountered were simply amazing. A lot of times, it would take way too long for someone to answer the call light. There were several occasions where I would have to sit in my own waste for an hour or longer before getting changed. I am extremely susceptible to UTIs, which I had to be treated for several times throughout my stay due to the length in time before getting changed and just from being catheterized on and off due to retention. Infections of any kind are to be avoided as much as possible because it could stall recovery or even cause regression. I can never understand how any facility can justify the ratio of Nurses and CNAs to patients. How can they give the best care possible when they have way too many patients to attend to? This greedy aspect of the health field industry and the cost of treatments is a bit discouraging to say the least. Not to mention the unwillingness of some LVNs and RNs to help change patients when CNAs are all busy. I don't get why some of them think they're above that when it's a part of their job as Nurses. Because you get paid more and have a better sounding job title or a little more education you're all of a sudden above changing patients and answering call lights? In any case, my case manager was an amazing woman named Robin who advocated for me and pushed to get me into the best subacute facility possible to no avail. She tried her hardest, but it was really difficult due to the timing of it all. It was during survey time for all the facilities so they were gearing up for that and no one wanted a patient my age without a detailed care plan in place or else they would get dinged pretty hard for that. My Pulmonologist, Dr. Kohli, is one of the best doctors I have ever encountered. He always pushed for the best treatments, was very responsive and easy to get a hold of, compassionate, knows how to talk to patients, and he really listens! I would talk to him about things here and there when he came in and a month later he would bring the subject up again showing he really does listen instead of just pretending to and nodding his head. He even followed me to the subacute facility even though I was his only patient there so he had to drive there every other week to check up on me.
