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| Us at the park in September 2012. He's gone pirate on me. |
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| Simon's Husky on my lap. The visiting dog to the left and the Keshund Chow mix at the right. |
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| This dog is incredible. A big teddy bear. He sleeps near Simon's bed every night and leaves once someone comes in and comes back once they leave Simon's room. |
I am going to outline every specific thing I do on a typical day. Before I get into that, I will list the various things that will be of a cause to deviate from the typical day.
- Simon hasn't had a bowel movement in over at least 2 days
- Simon hasn't slept or is irritable
- Simon is due for his hormone shots
- Simon had extensive physical therapy that day or is preparing for physical therapy
- Simon and I are going out, whether to the store, park, or the movies
- Simon has any one of his various medical appointments
- Simon is having a particular condition that affects his skin or health
- Simon had surgery [recently he had his third back surgery and it has been an emotional and very contrasting roller coaster]
Depending on the time of the year in accordance to school, I either work a morning shift or evening shift. I will, for ease and a more all encompassing example, describe the morning shift.
I arrive, greet the dogs and the mom. Mom will fill me in on the times he went to sleep the previous night, the time she gave him his seizure meds, the time she gave him his vitamins, the time and how many ounces she fed him if applicable, whether or not she gave him his probiotic yet, and if she has changed his diaper recently. If there are any concerns that have come up she will notify me. From there I let Simon sleep a little bit longer while I mix his medications for the rest of the day and the beginning of the next day.
Simon takes allergy medication, 4 different medications for seizures [taken 3 times a day], sometimes pain medication like Aleve or Tylenol, Vitamin C, various other vitamins, protein, and a probiotic [deviations would also include antibiotics, pain meds, extra vitamins, etc.] Because Simon is on a liquid diet, these medications need to be manipulated. The pills are mixed in little cups with hot water to be dissolved, liquid medications and vitamins are also put in cups or syringes. I typically mix all these to fill about 8 or so cups. Each cup must have the right number of each pill and can only be mixed with certain other pills. Each cup has its place on the bathroom vanity to mark the appropriate part of the day [AM, Noon, and PM]. If any of the medications are low, I check the hall closet for stock, if there isn't any there I notify mom immediate that we are low. I then go into the kitchen to mix his daily liquid vitamins that are kept refrigerated. There are four liquid vitamins [Flax oil, Magnesium, etc.] that are measured in milliliters and put into one cup, and a multivitamin in its own cup. I put these cups in their designated spot. Typically Simon has been fed his breakfast before I arrive, which is either Nutren Junior or a mixture of the Jr. with Nutren 1.5 which is more filling for him. Both are liquid and contained in an 8 ounce box. These are both stocked by the several dozens in the laundry room. Typically Simon still needs his probiotic some time after each of his meals. This is a single capsule that is dissolved in water, it smells really bad, but I am immune to it now. Because Simon eats via G-Tube, this is an interesting and also intimidating thing when new to the job. A G-Tube is possible by a surgical procedure where the stomach has an incision usually near or off to one side of the belly button and a "button" or we call a Micky/Mickey is attached on his external stomach [there are many variations of this, but I will describe his specifically]. The Micky has an opening in which we remove the top and insert a hollow tube that connects to a 2 ounce vial. The tube inserts into the Micky and must be turned to lock into place. Before attaching there must be water in the tube so no air goes into Simon's stomach. There is a locking device along the tube to control flow. In Simon's case we give him Propel water rather than plain water [dozens of bottles of Propel are also stored in the laundry room]. After the water filled tube is connected, I can then pour his probiotic, release the lock, let it flow directly into his stomach and then pour more Propel to clear the tube to make sure all of his probiotic is in his stomach. Once finished, I remove the tube and close the Micky. Every time I give Simon anything I must make a mental note of the time it was given.
At this time his meds are all made and the vanity is clean and organized as needed. Now I need to prepare to wake Simon up. Once he's awake it is time for a shower.
I need to describe his rooms before getting into that. Simon has 3 rooms and the living room that he mostly inhabits within the house. The main 3 are lined up with open walkways rather than doors. First is his bedroom, which contains a special bed with a gel top that can bend either way like a hospital bed and also vibrates/massages him. The room is fairly open with a large closet full of pillows, blankets, clothes, and medical supplies. Next is the bathroom, also open, with a vanity counter with two sinks and some storage space for his hygienic needs and medication. There is a toilet with a contraption that holds him on the toilet. It has plastic structure covered in mesh that supports his back, two arm rest, and Velcro straps to hold him in place. These are also used in special education classes. He also has two different "table" tops that attach to the arms for him to rest his arms on. The shower is open with a extension that holds the shower curtain and can be moved out of the way. The shower head has a removable arm and Simon has a mesh gurney that he lays on for his shower with 2 separate supports for his back and under his legs. Next is the therapy room which contains a large padded table where he can lay for diaper changes, physical therapy, laying and stretching. The table has the ability to be folded up and attached to near the ceiling, somewhat like a Murphy bed. This room is lined with mirrors so you can see Simon's expression from several angles. There is a desk where we keep some supplies and a closet full of crafts and what have you. Furthermore, these 3 rooms have been modified in at least a few ways. Each doorway has been widened to fit Simon's wheelchair. Months ago we also had a lift system [not cheap] installed on the ceiling that runs through all three rooms. This is a little hard to explain but I do have a couple photos below. It's basically tracks that run along the ceiling with a machine that has arms that can be lowered and raised. There is a mesh sling that holds Simon and attaches to the arms and he can be lifted up and manually moved to another location and lowered. I don't use this device all that much because I have the strength to pick up Simon myself, whereas his other caregiver and his mother are becoming less and less able to lift him on their own. Simon has to weigh at least over 90 pounds currently. I'm strong, but it must be noted the difficulty to lift a body that is both deformed and awkward without dropping or knocking him into anything nearby. So it's a bigger deal than it sounds. Not to mention that all the positions of which I lift and lower Simon onto are very low for a person as tall as myself [the others have that advantage over me by being shorter]. Next!
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| The view from the therapy room through the bathroom to the bedroom. The lift system is all the components seen on the ceiling. |
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| The machine with the arms...don't know the actual name! |
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| This is part of the bathroom and a view into the bedroom. |
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| This is the epic toilet contraption. Behold! |
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| This is the shower area with the gurney. |
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| This is a blurry photo within the therapy room, the padded table where we spend a lot of time doing physical therapy. |
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| This is Simon in bed in his usual position. Love those pants. |
I wake Simon up by talking to him, touching him, and turning the lights on. I give him a few minutes to process. I eventually turn him over on his back to stretch out and wake up more. Simon only sleeps on his sides because he has severe kyphosis, he basically has a large humpback on his right shoulder, making it uncomfortable to lay on his back without proper cushion for any amount of time. Simon is waking up, stretching out and probably making noises because he doesn't want to be awake just yet. I then turn him perpendicular to the bed and lay him back down after putting pillows behind his head to compensate for his kyphosis and past back surgeries. I then take his diaper off, lifting him partially to remove it. If he does not already have a shirt on, I must put one on him. This is exhausting and takes practice. Simon's head is rather small, so to start I get the shirt over his head, then I must get my hands through the right arm opening and pull his right arm through. This is important because Simon's arms are also somewhat deformed and very rigid, making it hard to stretch them out. The right arm is angled very different from the left, so it is easier to start with the right arm because it is harder to bend close to his body. While the shirt is loose enough, this arm will be pulled through, then I preparing the opening of the left arm opening and his left arm is easier bent towards his body and is pulled through. After this, I make sure the shirt is pulled over and stretched as best as it can be, any wrinkles that are embedded into his body for an extended time can lead to pressure wounds on his sensitive skin [these are not fun at all]. I then pick him up.
I have a strategy that is used every time I pick him up, took me a while to master it. I always pick him up from his right side, where his hump is. His right arm can be folded across his body or held against mine. I kneel down, put my right arm around his hump, and my left arm under his knees. Because Simon cannot see, you must always talk to him about what you are about to do, otherwise it tends to startle him. I say "Ok bud, I'm gonna pick you up, 1...2...33333!" And up we go, always on 3. I lift him, turn my body and walk towards the bathroom. I must be careful not to hit his legs or feet on the corners of the wall for he bruises easily. I lower him down on the toilet, hold him so he doesn't fall forward [very likely to happen since he can't hold up his weight], move my body to face him and put my arms under his armpits and lift and scoot him back as far as he can go. I have to spread his butt cheeks otherwise he will never try to pee or poop, I also need to make sure his penis is pointed downwards. I then put his arms on the arm rests and strap him in as tight as I can. Next I attach the table under his arms so he can rest. Simon will sit there from 10-20 minutes until I either hear or smell poop or pee. Sometimes this doesn't happen so I can wait longer or I will talk to him and ask repeatedly if he is done. I can ask him to show me by either looking up at me or showing me his eyes [because they're still kind of closed as this point].
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| Simon waking up and on the toilet with the lift system above him and the sling behind him. |
While I'm waiting I usually set up the therapy table or his bed with pillows a towel and all the supplies to get him ready after his shower. I also set up the shower, moving rugs, putting tooth paste on his toothbrush, getting a new wash rag, and warming up the water. I must have everything ready for the shower because he can fall out of his gurney so I cannot leave him unattended, that's a 3-4 foot drop for him. His after shower area is set up with many items. I tend to forget at least one thing, but I've had it down perfectly for a while now. It's not as strict to have everything ready there because he can lay in a way that won't allow him to fall off. Items include, Aquaphor to prevent diaper rash and provide a barrier from his excretions. Neosporin, gauze, and tape for his Micky to prevent and hold leaks. Deodorant, face wipes, face lotion, body lotion, chapstick, hair brush, special scar oil, baby wipes, cream that may be used on any applicable pressure wound, a drool rag, a t-shirt, shorts, and a diaper. An important thing to know about what goes on in this household is that EVERYTHING has its place, everything is organized and stocked in sufficient quantities. It is so organized and clean that I enjoy it very much. Most things are cleaned as they are used as well.
Prior to getting him in the shower I remove my watch, my shoes and socks, and roll up my pants if applicable. Once I feel Simon has had enough time on the toilet I unstrap him, pull his shirt off in the same order of getting it on [over the head first, right arm then left]. I wipe him if needed. Next I warn him that I will lift him slightly towards the edge of the toilet then I will count to 3 and lift him off the toilet and onto the shower gurney. I situate him in a stable position and put a gym style cushion under his legs. Simon also had hip surgery 10 years ago and has difficulty with his hips and legs, one in particular the right one, never rests fully flat and needs cushion under it to make him comfortable and avoid strain. I have already or do warm up the water. I warn him with the sound and then by wetting his feet first and slowly working my way up his body. Simon has a tendency to get cold very easily and sometimes may shiver, which is normal but slightly heartbreaking sometimes. The whole showering process is all routine and generally takes 10-15 minutes total no matter how I try to make it faster or last longer it always ends up the same. I also always get wet during this process, hence removing my shoes and what not. I warm up Simon's body and his wash rag. I wet and wipe his face with the rag. Run water through his hair carefully. I get facial cleanser and wash his face with my hands. He particularly dislikes any part that involves touching his face and mouth. He will scrunch up his face and may make noise. I do this as fast as I can. I wipe the soap off. Next I shampoo his hair and rinse, meanwhile give verbal clues of each thing I do. Sometimes I may give him a short massage or give him a wet mohawk. Next I wet his already ready toothbrush and warn him that I will be doing his teeth usually by talking and gently tapping his mouth. This part is hard but comes with practice. He will purse his lips and tense his mouth but the more you talk to him and ask him to help he will by loosening up his mouth. I use my right hand to hold up his head so he doesn't choke, sometimes he wants to keep his head back so I have to use my strength. I will brush with my left hand and do this as fast as I can and avoid causing him to gag. Simon may not eat food through his mouth most of the time but he does get "crusties" on his mouth overnight. Once done brushing I spray the water in his mouth periodically and he is so wonderful at holding the water in his mouth and then spitting it out on his own. Sometimes I have to prompt him to spit and sometimes he's close to spitting on me and I just laugh. I do this several times to make sure his mouth is thoroughly rinsed of paste while also rinsing his body to keep him warm. I inspect his mouth to make sure there's not much water left in his mouth and when comfortable, lay his head back down. I rinse him to warm him up again, warm up his wash rag and put body wash on it. I then scrub his body, all his crevices between toes and fingers, everywhere. Simon is also uncircumcised so I must pull back his foreskin and wash that as well. Once I've done the front part of his body, I warn him on 3 that I will lift his back and put him in partial sitting position to wash his back. Final rinse off and clean the rag and we are done with the cleaning.
I dry Simon with a towel the best I can while he is still on the gurney. Next I remove the cushion from under his legs and prop his knees up, warn him I'm sitting him up partially and put my arms in their lifting position and count to 3. I then take him to his bed or therapy table and lay him on the towels and pillows. Simon will lay on his back with his legs bent with a towel over his legs to keep him warm. First I put the gauze with Neosporin around his Micky, tape it together. Next I warn him that I will be wiping his face with the "one he doesn't like". He has two face wipes, one is Stridex which has a strong smell that he doesn't particularly enjoy, the other one smells like honey and we both like that one a bit better. I wipe his face and let it dry and apply chapstick. I then wind up the deodorant, stretch one arm up, warn him with a "Cold, cold." and apply it to each arm. The deodorant is gel and can be cold and if he's not warned he will flinch due to being startled. I then wipe clean the deodorant stick with baby wipes and wind it back down. Next I apply body lotion on his upper body, this I also have to warn him about the coldness. Next I put him in sitting position to put lotion and scar oil on his back [he has a long scar down the length of his spine from a surgery where they put a rod and wires in his back]. Next I put a t-shirt on him, smooth it out and lay him back down. Sometimes depending if Simon peed in the toilet before his shower I may put a diaper under his body while I'm getting him ready, sometimes he even pees on the towel before I get to that point. He may make noises to warn you that he has to pee, but they can often be confused with his discomfort of laying on his back, being woken up, or being pampered with too much. This understanding takes time and practice. If he doesn't already have a diaper under him, I will warn him and lift him partially to put the diaper under him. I am not yet ready to secure the diaper, but apply lotion on his legs and feet and then Aquaphor on his inner legs and his crotch. I wipe the spatula of Aquaphor and then secure the diaper. This is tricky because of Simon's hips and rigidity, you have to make sure the diaper is on tightly and properly. Don't want any leaking or and wrinkles embedded into him. Next I put on his shorts or pants and then socks. If we are going out he will have shoes on too. I should add that this whole process, from the shower to getting him ready is physically exhausting for me. Lifting Simon, while it's not easy breezy is still actually fine, it is the leaning and crouching over him that messes up my back. Like I said earlier, every surface I usually work with Simon on is very low for me. The shower gurney comes up to my hips and I must keep my body hovering him to prevent him from falling off.
What happens next varies on the day and what needs to be done. Sometimes Simon and I will go somewhere which I will explain because that is its own process. Sometimes we will stretch on the therapy table. I'll describe both.
If we are going out I make sure his travel bag is stocked with water, pads, diapers, wipes, food, and his G-Tube supplies. This then hangs off his handles on his wheelchair. If going to the theater I will pack a couple pillows and a blanket to keep him warm. I grab some sunglasses that match his clothes for the day. Generally I prepare to take Simon out and have him home before he needs any medication or food. I don't personally like giving him these things while out because I feel nervous that we may not be able to do it at the right time depending on whatever we are doing. It's just a nervous obsessive thing for me, but can be done. So timing, for us, is everything. I already have it mapped in my head the times for his medications and his lunch based off the times that his mom had given to me earlier in the morning. Typically he gets everything 5 hours after he last received them. Anyways, I sit Simon up, tell him what I'm about to do, lift him and set him down in his chair. I sit him near the edge, make sure his shirt is as smooth as can be on his back and his shorts are up high enough. Next I straddle him and the chair and put my arms under his arm pits to lift and scoot him back by using my knees. It's an interesting sight but it is the most effective way to sit him in his chair. Then I must make sure his butt and hips are in the correct position. His chair is specially and laboriously made to fit his body and all his deformations. It contours to him and if he is put in it incorrectly it can be very uncomfortable for him. I make all the adjustments necessary and put the arm rests on at the designated level. I have to then secure him in the chair, this is only necessary when traveling. There is a strap that goes over his lap and another kind of security vest that covers his chest and attaches to the chair at his hips and behind his head. All the while I'm doing these things I'm likely telling him all about wherever we are going.
If I work a longer shift or on the weekend, I usually take him to the movies. I love doing this with him but it's also very stressful because he may get fussy and I have to wheel him out and into the family bathroom to figure what it is I need to do. I'm getting ahead of myself, I'll explain more of that in a bit. Other options are going to the store, any store, whether to pick something up for him as a gift or something that he needs. I recently even took him to get his hair cut. If the whether is nice we will go a park nearby that he likes. The wind in the air and all the sounds around are nice for him. We may go to appointments or sometimes just for a ride. Simon is now good in his chair, I wheel him into the kitchen near the garage door. I grab the keys, open the garage and leave Simon behind momentarily while I put the Chrysler van out of the garage. This van has been handicap customized. There is no middle row inside the van, just two front seats and a back row. The open space in the middle is laid with metal attachments and straps. There is also a ramp that comes out from the bottom on the right side of the van. I must pull the van out to allow space for the ramp to pull out. I also get the radio and air condition on. I run in, put Simon's sunglasses on and get him down the little ramp out the garage door. I then have to make sure all straps on the van floor are out of the way and that Simon's arms are close to his body so they don't whack against anything. I have to wheel Simon up the van ramp backwards, while I kneel so I can fit in the van [another disadvantage to this job as a tall person]. Once in, I must maneuver my body in small spaces and literally lift and shift the chair to face the front of the van, but also align it in the center so that all the straps can reach it. Once the desired position is in place, I hold the handle that allows the chair to lean backwards, and clamp on the brakes. Next I release each of the two straps on one side and hook them to designated places on Simon's chair. I also pull the extra long seat belt over him. I press the button to bring up the ramp and automatically close the door and walk over to the other side of the van and strap the two straps to his chair and secure the seat belt. I close that door and hop into the van. Simon is really good on rides and I sincerely hope he enjoys it. I play music, sing and talk to him. I must warn him of speed bumps and go really slow. This van is fast but, to me, feels hard to brake. I always give him verbal warnings of how close we are and what we are doing. Sometimes at a red light I will wipe Simon's drool. When we arrive to our destination, I open all the doors, pull out the ramp [yay for handicap parking!], and unhook him. I release the seat belt and the chair brakes. I roll him out and we are on our way.
I will probably leave it for its own separate post, but will mention that taking Simon out in public is very interesting, stressful, but yet somewhat liberating. Everyone stares, that's discomforting but at the same time I have my own other attitude about it too. It's very hard to open doors and get Simon through at the same time. I thank each and every single person that has ever held a door open for us. Bathrooms are its own ordeal. If you think about movie theaters, outdoor malls, small shops, imagine wheeling a large chair with a 90 pound child in it. I've gotten my clothes stuck and ripped, I've bumped into walls and doors, etc. It's not the easiest thing to maneuver and if people around recognize and help in any way, it shows they are observant and sensitive. I will add further to the theater part, sometimes Simon makes noises, sometimes a loud sigh or yawn. Or if he really needs to go to the bathroom, is hungry, or needs to be re-positioned he can get fussy and make repeated sounds. The causal noises are unexpected and when they happen, especially in the movies, they alarm me part because I need to assess if he's ok and I don't want to disturb the other moviegoers. I'm super anal in movie theaters and I hate when people use their phone, make loud noises, or talk, even if it's my own friends. I hate any kind of distraction because the movies is an escape for me. So taking Simon to them is where I need to adjust my experience, otherwise it just stresses me out instead. Simon may not see but he reacts to lighting and he has very good ears. If he is particularly enjoying a film, he keeps his head up alert for the whole time and his eyes wide. If he's tired or a little bored, he will usually lower his head. I've come to realize that the chaos of the films are actually more relaxing to him rather than boring.
If we are not going somewhere, we will stay home and do his daily stretches, usually with music playing in the background. Stretching can either or both be done on his upper body or his lower body. Lately since he is recovering from a back surgery, I have been stretching his upper body. I sit behind him on the therapy table with my legs at his side and him between them. Since Simon's upper body bears the most of his weight due to his barrel chest and his kyphosis, we practice him sitting up on his own. This is done while I lean back so he cannot lean against me and my arms are out around him ready to grab him in case he leans too far back or forward. This goes on for about 10 minutes. Next I will stretch each arm upwards and out. I also work on each arm's ball and socket joint by moving his arms in circular motion. I extend his forearms, massage his shoulders and arms, and everything is repeated and done for about 30 minutes. If we are working on his lower body, this usually consists of Simon laying on his back with his legs extended as far as they can be. Simon's comfort is accessed here by adjusting pillows underneath him wherever needed. He will lay this way for 10-20 minutes. Periodically I will do various positions with his legs and hold them there for about a couple minutes. Positions include bending each knee, bringing each knee to his chest, and also spreading his legs while his legs are bent. The latter position is very difficult for Simon due to the condition of his hips, but essential in his physical therapy. My stretching sessions are vital in preparation for his weekly physical therapy home visits by a professional.
Once done with stretching I will let him rest for a little bit either by laying on his side or putting him into his wheelchair. If he's in his chair we will go out into the living room right outside his therapy room and watch television or a movie. Generally by this time it is time to give him his afternoon seizure meds. I fill the tube and vial with Propel, attach it to Simon, pour in the medicine, then more Propel. Time varies but I may also feed him half of his lunch, usually 4 ounces of Nutren Junior. I will need to access if he is full or not. This is done by tapping his lips, if he makes a retching movement or sound with his lips he is full. I will space out his lunch and wait 20-40 minutes until I give him the remaining 4 ounces, his probiotic, and more Propel to top it off. While waiting between feedings we will watch television and I may put wrist guards on both of his arms to help prevent further deformation and help stretch his wrists and fingers. The seizure medications tend to make Simon sleepy so he may dose off a bit. This is usually the near end of my shift so I want him to relax before the other caregiver comes over. She will then either take Simon out to a movie, wherever, and do more stretches with him as well. I also consistently check Simon's diaper, which is color coded to show whether it is dry or wet. Yellow lines on the diaper mean dry, and turn blue if he has had any excretions. If he is wet at any point in my shift, I will take him into the therapy room, remove him from his chair, put him on the table and change his diaper. Depending on the schedule of the day and what time is left of my shift, I will put him on the toilet in case he needs to pee or poop. He does not enjoy pooping in his diaper, so he will usually hold it until put on the toilet, unless it is very urgent [generally when out of the house]. Once the other caregiver arrives, I fill her in on all the exact information that the mom usually gives me when I arrive. I tell her the time he last was on the toilet, if he had a bowel movement, if he has peed recently, when I gave him each medication, when he ate and how much, and his general mood of the day. I must also report any mark, a scratch, pressure wound, or bruise that has appeared to the mom or the other caregiver.
That is the most typical morning shift which I have during the summers. If I were to work the evening shift, which I do while he is in school, it would reflect most of what I described above except he will get another bath just prior to bed time. I feed him dinner and give him his night seizure meds and his night vitamins. After showering, I get him ready with all those items I described and usually dress him in a shirt or only a diaper for bed time. When in bed, he usually sleeps on his left side which is most comfortable to him due to his kyphosis. His head lays on a foam pillow that his homemade with a hole cut in the middle so his ear doesn't touch anything. He often gets pressure wounds on his ears if they rest against anything so it is important that he is situated perfectly. He also has a pillow underneath his hump, a pillow between his knees, and a pillow between his feet to prevent pressure wounds there. Pressure wounds come usually when he is in one position for a long period of time without moving, when sleeping especially, he is pretty much dead weight and all this weight on a strained part may create a pressure wound which takes quite some time to heal and can get infected. On every evening shift that I have with him, I situate him, pull the covers up, lift the head part of the mattress, and turn on vibrating mode to soothe him to sleep. I kiss him goodnight and tell him I love him. I will then clean his therapy table, his bathroom counter, the mirrors, his wheelchair and finally fill the mom in on all the stats. Then I'm gone til the next day.
This is my story, this is my job, and that kid is everyone's most prized love. I will never forget him and I would die for him.
I dry Simon with a towel the best I can while he is still on the gurney. Next I remove the cushion from under his legs and prop his knees up, warn him I'm sitting him up partially and put my arms in their lifting position and count to 3. I then take him to his bed or therapy table and lay him on the towels and pillows. Simon will lay on his back with his legs bent with a towel over his legs to keep him warm. First I put the gauze with Neosporin around his Micky, tape it together. Next I warn him that I will be wiping his face with the "one he doesn't like". He has two face wipes, one is Stridex which has a strong smell that he doesn't particularly enjoy, the other one smells like honey and we both like that one a bit better. I wipe his face and let it dry and apply chapstick. I then wind up the deodorant, stretch one arm up, warn him with a "Cold, cold." and apply it to each arm. The deodorant is gel and can be cold and if he's not warned he will flinch due to being startled. I then wipe clean the deodorant stick with baby wipes and wind it back down. Next I apply body lotion on his upper body, this I also have to warn him about the coldness. Next I put him in sitting position to put lotion and scar oil on his back [he has a long scar down the length of his spine from a surgery where they put a rod and wires in his back]. Next I put a t-shirt on him, smooth it out and lay him back down. Sometimes depending if Simon peed in the toilet before his shower I may put a diaper under his body while I'm getting him ready, sometimes he even pees on the towel before I get to that point. He may make noises to warn you that he has to pee, but they can often be confused with his discomfort of laying on his back, being woken up, or being pampered with too much. This understanding takes time and practice. If he doesn't already have a diaper under him, I will warn him and lift him partially to put the diaper under him. I am not yet ready to secure the diaper, but apply lotion on his legs and feet and then Aquaphor on his inner legs and his crotch. I wipe the spatula of Aquaphor and then secure the diaper. This is tricky because of Simon's hips and rigidity, you have to make sure the diaper is on tightly and properly. Don't want any leaking or and wrinkles embedded into him. Next I put on his shorts or pants and then socks. If we are going out he will have shoes on too. I should add that this whole process, from the shower to getting him ready is physically exhausting for me. Lifting Simon, while it's not easy breezy is still actually fine, it is the leaning and crouching over him that messes up my back. Like I said earlier, every surface I usually work with Simon on is very low for me. The shower gurney comes up to my hips and I must keep my body hovering him to prevent him from falling off.
What happens next varies on the day and what needs to be done. Sometimes Simon and I will go somewhere which I will explain because that is its own process. Sometimes we will stretch on the therapy table. I'll describe both.
If we are going out I make sure his travel bag is stocked with water, pads, diapers, wipes, food, and his G-Tube supplies. This then hangs off his handles on his wheelchair. If going to the theater I will pack a couple pillows and a blanket to keep him warm. I grab some sunglasses that match his clothes for the day. Generally I prepare to take Simon out and have him home before he needs any medication or food. I don't personally like giving him these things while out because I feel nervous that we may not be able to do it at the right time depending on whatever we are doing. It's just a nervous obsessive thing for me, but can be done. So timing, for us, is everything. I already have it mapped in my head the times for his medications and his lunch based off the times that his mom had given to me earlier in the morning. Typically he gets everything 5 hours after he last received them. Anyways, I sit Simon up, tell him what I'm about to do, lift him and set him down in his chair. I sit him near the edge, make sure his shirt is as smooth as can be on his back and his shorts are up high enough. Next I straddle him and the chair and put my arms under his arm pits to lift and scoot him back by using my knees. It's an interesting sight but it is the most effective way to sit him in his chair. Then I must make sure his butt and hips are in the correct position. His chair is specially and laboriously made to fit his body and all his deformations. It contours to him and if he is put in it incorrectly it can be very uncomfortable for him. I make all the adjustments necessary and put the arm rests on at the designated level. I have to then secure him in the chair, this is only necessary when traveling. There is a strap that goes over his lap and another kind of security vest that covers his chest and attaches to the chair at his hips and behind his head. All the while I'm doing these things I'm likely telling him all about wherever we are going.
If I work a longer shift or on the weekend, I usually take him to the movies. I love doing this with him but it's also very stressful because he may get fussy and I have to wheel him out and into the family bathroom to figure what it is I need to do. I'm getting ahead of myself, I'll explain more of that in a bit. Other options are going to the store, any store, whether to pick something up for him as a gift or something that he needs. I recently even took him to get his hair cut. If the whether is nice we will go a park nearby that he likes. The wind in the air and all the sounds around are nice for him. We may go to appointments or sometimes just for a ride. Simon is now good in his chair, I wheel him into the kitchen near the garage door. I grab the keys, open the garage and leave Simon behind momentarily while I put the Chrysler van out of the garage. This van has been handicap customized. There is no middle row inside the van, just two front seats and a back row. The open space in the middle is laid with metal attachments and straps. There is also a ramp that comes out from the bottom on the right side of the van. I must pull the van out to allow space for the ramp to pull out. I also get the radio and air condition on. I run in, put Simon's sunglasses on and get him down the little ramp out the garage door. I then have to make sure all straps on the van floor are out of the way and that Simon's arms are close to his body so they don't whack against anything. I have to wheel Simon up the van ramp backwards, while I kneel so I can fit in the van [another disadvantage to this job as a tall person]. Once in, I must maneuver my body in small spaces and literally lift and shift the chair to face the front of the van, but also align it in the center so that all the straps can reach it. Once the desired position is in place, I hold the handle that allows the chair to lean backwards, and clamp on the brakes. Next I release each of the two straps on one side and hook them to designated places on Simon's chair. I also pull the extra long seat belt over him. I press the button to bring up the ramp and automatically close the door and walk over to the other side of the van and strap the two straps to his chair and secure the seat belt. I close that door and hop into the van. Simon is really good on rides and I sincerely hope he enjoys it. I play music, sing and talk to him. I must warn him of speed bumps and go really slow. This van is fast but, to me, feels hard to brake. I always give him verbal warnings of how close we are and what we are doing. Sometimes at a red light I will wipe Simon's drool. When we arrive to our destination, I open all the doors, pull out the ramp [yay for handicap parking!], and unhook him. I release the seat belt and the chair brakes. I roll him out and we are on our way.
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| Simon's current wheelchair. Notice the contours on the back and the seat, every bump matters. This chair is also some 50 pounds or so. |
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| This is the van, with a partial view of Simon strapped in. |
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| Simon strapped in and ready to go! |
If we are not going somewhere, we will stay home and do his daily stretches, usually with music playing in the background. Stretching can either or both be done on his upper body or his lower body. Lately since he is recovering from a back surgery, I have been stretching his upper body. I sit behind him on the therapy table with my legs at his side and him between them. Since Simon's upper body bears the most of his weight due to his barrel chest and his kyphosis, we practice him sitting up on his own. This is done while I lean back so he cannot lean against me and my arms are out around him ready to grab him in case he leans too far back or forward. This goes on for about 10 minutes. Next I will stretch each arm upwards and out. I also work on each arm's ball and socket joint by moving his arms in circular motion. I extend his forearms, massage his shoulders and arms, and everything is repeated and done for about 30 minutes. If we are working on his lower body, this usually consists of Simon laying on his back with his legs extended as far as they can be. Simon's comfort is accessed here by adjusting pillows underneath him wherever needed. He will lay this way for 10-20 minutes. Periodically I will do various positions with his legs and hold them there for about a couple minutes. Positions include bending each knee, bringing each knee to his chest, and also spreading his legs while his legs are bent. The latter position is very difficult for Simon due to the condition of his hips, but essential in his physical therapy. My stretching sessions are vital in preparation for his weekly physical therapy home visits by a professional.
Once done with stretching I will let him rest for a little bit either by laying on his side or putting him into his wheelchair. If he's in his chair we will go out into the living room right outside his therapy room and watch television or a movie. Generally by this time it is time to give him his afternoon seizure meds. I fill the tube and vial with Propel, attach it to Simon, pour in the medicine, then more Propel. Time varies but I may also feed him half of his lunch, usually 4 ounces of Nutren Junior. I will need to access if he is full or not. This is done by tapping his lips, if he makes a retching movement or sound with his lips he is full. I will space out his lunch and wait 20-40 minutes until I give him the remaining 4 ounces, his probiotic, and more Propel to top it off. While waiting between feedings we will watch television and I may put wrist guards on both of his arms to help prevent further deformation and help stretch his wrists and fingers. The seizure medications tend to make Simon sleepy so he may dose off a bit. This is usually the near end of my shift so I want him to relax before the other caregiver comes over. She will then either take Simon out to a movie, wherever, and do more stretches with him as well. I also consistently check Simon's diaper, which is color coded to show whether it is dry or wet. Yellow lines on the diaper mean dry, and turn blue if he has had any excretions. If he is wet at any point in my shift, I will take him into the therapy room, remove him from his chair, put him on the table and change his diaper. Depending on the schedule of the day and what time is left of my shift, I will put him on the toilet in case he needs to pee or poop. He does not enjoy pooping in his diaper, so he will usually hold it until put on the toilet, unless it is very urgent [generally when out of the house]. Once the other caregiver arrives, I fill her in on all the exact information that the mom usually gives me when I arrive. I tell her the time he last was on the toilet, if he had a bowel movement, if he has peed recently, when I gave him each medication, when he ate and how much, and his general mood of the day. I must also report any mark, a scratch, pressure wound, or bruise that has appeared to the mom or the other caregiver.
That is the most typical morning shift which I have during the summers. If I were to work the evening shift, which I do while he is in school, it would reflect most of what I described above except he will get another bath just prior to bed time. I feed him dinner and give him his night seizure meds and his night vitamins. After showering, I get him ready with all those items I described and usually dress him in a shirt or only a diaper for bed time. When in bed, he usually sleeps on his left side which is most comfortable to him due to his kyphosis. His head lays on a foam pillow that his homemade with a hole cut in the middle so his ear doesn't touch anything. He often gets pressure wounds on his ears if they rest against anything so it is important that he is situated perfectly. He also has a pillow underneath his hump, a pillow between his knees, and a pillow between his feet to prevent pressure wounds there. Pressure wounds come usually when he is in one position for a long period of time without moving, when sleeping especially, he is pretty much dead weight and all this weight on a strained part may create a pressure wound which takes quite some time to heal and can get infected. On every evening shift that I have with him, I situate him, pull the covers up, lift the head part of the mattress, and turn on vibrating mode to soothe him to sleep. I kiss him goodnight and tell him I love him. I will then clean his therapy table, his bathroom counter, the mirrors, his wheelchair and finally fill the mom in on all the stats. Then I'm gone til the next day.
This is my story, this is my job, and that kid is everyone's most prized love. I will never forget him and I would die for him.
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