A day in the life of me right now

It's a lot. I'm not gunna lie. People ask what I do during my down time......HA! I'm sure, from the outside, it probably seems like I'm just here hanging out with not much to do, while Porter goes to therapy and stuff. And that may be true for some family or friends that have loved ones here. This place is designed to have 24/7 care from a wonderful staff of people that are competent and able to care for Porter. But, I have made the choice to be his #1 care-giver and since I want to be here and have chosen to make this place my home while Porter is here, I am FULLY involved. I figure, I might as well be doing every imaginable thing I can do to help his recovery and well being. I want to be well equipped for when he comes home and I HAVE to be the 24/7 care. I am so grateful for how kind everyone has been to me here. They all know me now and I try not to get in their way. I know there are still things that I am learning and shouldn't and can't do yet. But, eventually, I want to know how and want to be proficient in every aspect possible.

WARNING: This post might not be for everyone. I want to have it on record for myself. So I'm putting it out there, but don't say I didn't warn you. In this post we are going to talk Bathroom talk. 

Here is a look into our day to day world and what I'm doing. I don't share this to say, "Look at me, and all that I'm doing" but I am saying that in the sense of 'It's a lot.' Learning to care for Porter and his needs is kind of a full time job. And while I am here, I have realized that I can do all of these things with no distractions because I don't have ANYTHING else to do or need to do. (Well, that's a lie. I do have things I need to do, but I'm using Porter as an excuse to not do them.) I know that when we get to a real life situation, all that I am doing will be combined with normal life tasks and obligations. I'm so grateful to have been removed from all of it for this time to learn and understand what the next step will look like. 

I usually awaken at 6:00 because that's when I need to cath Porter. [Cath = insert a catheter (a long small tube) into Porter's penis which then goes into his bladder to drain his urine.] With Porter's level of injury, he is unable to feel the urge to pee and he can't go pee on his own because the brain is not getting the message to squeeze/relax those muscles that allows pee to release. He also can not feel the sensation of having a full or empty bladder. So, we need to catheterize him. When we were in Las Vegas, they taught us how to cath Porter.  This has to be done about every 4-6 hours depending on how much he drinks, but also it's not good to let the urine sit in his bladder much longer than that. Although, at night, we try to let him go for about 8 hours because typically, he doesn't wake up in the night and need to go pee. I was hesitant at first to learn and it took me a minute to get over my projection of his level of modesty. I didn't ever want Porter to feel uncomfortable or weird that his mom was touching him and seeing him naked. I got over that quick and it helped when Porter said to me, "If I could feel it, it would be weird, but I can't, so it's fine." By the time we left Las Vegas, I felt totally comfortable doing the cathing. When we got to Salt Lake, the staff didn't have us do much of the cathing, but now I am the only one that does it. (Except for when Paul is here) It takes about 7 minutes to get him prepped, ready, drained, and resituated. We can pretty much do it anywhere. In bed, in his chair, in a bathroom, or in the shower. In the early morning, he pretty much sleeps through it. There are different types of catheters and various ways that people do this and at different stages of his life and situations, I'm sure it'll change. His Occupational Therapist is starting to teach him how to do this on his own, so that he will eventually be able to be independent. It's always cute to watch them introduce a new skill to Porter and see him thinking, 'I won't be able to do that.' And then within a couple of weeks, he can do it. He loves a challenge.

I usually climb back in bed after I cath him at 6:00, but sometimes I go for a walk. Then at 7:30, I get up and get ready for the day. Sometimes that includes and shower, but sometimes not. I get Porter up at 8:00. I try to wait for the respiratory therapist to do the honors, but if they're not in here by 8:00, I turn off the sound machine and whisper, "It's time to start waking up." I raise the head of his bed up a little to get the blood flowing. I take out his retainers and brush them. I pick out an outfit for him and put his compression socks on him. He wears those to prevent blood clots and swelling and increase circulation. Then I take any cold items off his breakfast tray from the cafeteria that have become room temperature and go switch them out for cold ones. They have a little fridge at the end of the hall where I keep a couple of things. We open the blinds and let some light in the room and then I start feeding him breakfast. The nurse comes in and administers his medications and takes his vitals and does a quick assessment. Breakfast is usually interrupted by the doctors doing their rounds and coming in to check up on Porter and see how things are going. They are always very happy to answer any questions or resolve any issues we may have. This week the doctors said, "Porter has become one of our easiest patients because he doesn't really have any medical needs." Those words were music to my ears. He is still on a blood thinner and blood pressure medication and will be for awhile. He takes a pill that helps his bladder store urine and not leak. He is on a nerve pain medication because his thumbs and forearms buzz a lot which bothers him, but they will eventually wean him off of that. He is on an anti-acid medication. He takes a stool softener and multi-vitamin and that's about it. It seems like we have them all regulated to do their jobs and so he is in a good place right now. 

After breakfast and after he gets his pills and does some breathing treatments for his asthma, we start getting ready. I put his pants/shorts on and then use the Hoyer/sling to get him into his wheelchair. He puts on his own shirt with minimal help while I slide his shoes on. Then he goes into the bathroom and brushes his teeth, which he can do alone. I usually help him a little with washing his face, but he does as much as he can. By that time, Abby is usually in the room to start occupational therapy. Sometimes, if we have had a slower morning, she helps him get ready. Our first therapy session is typically 90 minutes and as soon as it's over, I cath Porter and from there, we have an education class or some physical therapy until noon. Then we have an hour break for lunch. We have had so many awesome people bring us food and visit for that hour. It's been very fun and we love seeing outsiders. After lunch we have another session of physical therapy or sometimes we have time with a psychologist or Porter gets a massage or an add-on therapy session on the FES bike. That goes until around 3:15 and then we cath him and then go for a walk outside or go up to our room and nap/chill until 4. 

At 4:00 every day we have bowel care. Just like with his bladder, Porter's nerves do not tell the brain when he needs to have a bowel movement and his body can't release the stool without help. So, we tried to figure out a time that would work every day to take care of his bowels. We decided on 4:00. There is a special chair he sits in that looks like a toilet seat but also has arm rests and a back on it. We assist Porter in making this natural process happen and it usually takes about 30-45 minutes. Just enough time to watch an episode of Psych. (I keep teasing Porter that he is going to become conditioned to feel like he needs to poop whenever that show comes on in the future. Hahaha) The stool drops into a disposable container and we throw it out when he is done. From there, we keep him in that chair and roll it into the shower. It's a handheld shower head and we spray him down and wash him one section at a time, shampoo his hair, wash his face and then just let the water get hotter and hotter as we spray his head and let the warm water fall over his shoulders where he can feel. He loves that part. Then comes his worst favorite part (I love how he says worst favorite) - being freezing while I dry him off and get him in his sling and then back into bed. Quick side story - one time this week as I was drying him off he said, "Thanks mom." I reassured him I would do anything for him. He said, "I know it's a lot and I'm sorry you have to do it." I told him how proud I am of how far we have come and how quickly we are able to get it done. We make a good team. Those sincere thank you's make it all worth it. Ok, back to our day. As soon as he's in bed, we call for the aides and have them bring very warm blankets. We drape one over his head, and the other over his shoulders and arms. He loves that part. By this time, it's about 5:30. I proceed to put moisturizer on his face, rub a special thick concoction on his feet and put some socks on him, and then get him dressed. 

Now it's time to cath him again. So we get that taken care of, just in time for dinner. Again, we typically have had people bring us meals, which has been the biggest blessing. Everyone is so generous and kind and have spoiled us with yummy meals. We have fun visiting with whomever brings the food and have seen it as such a special time to share with those we love. I help feed Porter what he can't feed himself, although every week he is improving in this area as well. When we are done eating and visiting, if it's not too late, we sometimes will FaceTime someone or listen to music or visit with the nurses or catch up on Marco polos or read thoughts or quotes or letters or whatever we want. The respiratory therapist comes in and does a treatment and the nurse makes sure he has his nighttime meds. Then we get ready for bed. This consists of washing his face, brushing his teeth, undressing him and cathing him. Then I get him all situated in bed and make sure he is turned to one side. We do this to prevent him from getting pressure sores. We have a wedge we put under his shoulders and back and then we put pillows under his butt and legs so he is leaning almost onto his side. (Throughout the night he needs to be rotated every 2 hours. The nurses and aides do this for now, but it will be something we will need to help him with until he gets enough strength to do it himself.) Once he is comfy, which sometimes takes quite a while to get his pillow and arms just right, I turn on the book of Mormon and we listen to a chapter or two. Then we pray, not always together, but a lot of the time. Now it's around 10:30 and I turn on the sound machine and then more times than not, he asks me to tickle his head. I stand there next to his bed, staring at his darling face, watching him lay there peacefully and I have SOOOO many mixed emotions from day to day. 



Sometimes, I am enamored by his sweet countenance. Sometimes, I am tired and wonder how I'll do it all again the next day. Sometimes, I am reflecting at how dumb and silly he is and how he made me laugh throughout the day. Sometimes, I am longing to really know how he feels and what he thinks. Sometimes, I am overwhelmed with peace and other times I am filled with sorrow and grief. Sometimes, I find myself so grateful for the many tender mercies throughout the day. Sometimes, I struggle to see how this is going to play out. Lots of times, I smile and fall into bed. A few times, I have tried to keep the tears from soaking my pillow. 

And that's: A day in the life of me right now. 





             


Comments

  1. One day at a time. But, even just one day can be overwhelming at times and like you said full of gratitude another. I love you

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  2. If anyone can do this, it’s you. Thank you for sharing your journey and letting us be a little part of it. I’m praying for you!

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  3. I am humbled and strengthened by your blogpost. Thank you for being real and for sharing your raw emotions and experiences. Porter seems like a very special child of God and being entrusted to your care is a privilege and a journey that is affecting lives of so many around you in ways you may never understand.

    ReplyDelete
  4. I would love to talk to you and tell you a few things that made my life easier in helping my son get independent. My name is Karen Greene and I am Mary and Mark’s friend and my son was injured at 16 also. I was like you and stayed with My son 24/7 and did all his care! My son Wes was able to go on to BYU Idaho all on his own and Graduate. He was married last July. I promise life gets easier. You all are in my prayers.

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