What a week

A weeks worth.  You better get a snack...

All of the days bleed together and sometimes I can't remember one day from another. It's a touch groundhogish almost (Movie with Bill Murray). I should maybe do what he does and try different tactics to see what works best and makes Porter the happiest and produces the best results. Watching for lessons to be learned each day and using them to my benefit. Now that I'm thinking about it....maybe I'll do that. However, I have written down a few notes about each day.  

Monday started out fairly typical - got Porter up and going. His blood pressure tends to always be a little low in the morning, so we were taking it slow. Dan and Jade got him downstairs in the stand up machine. He was super mellow. He was feeling very low energy and dizzy and light-headed. They pushed and encouraged him until they could tell he wasn't really up for it. I brought him back to the room and let him sleep for a bit. 

My cute sister, Jenny, brought some lunch for us and we were having a great visit. She was helping me wade through some of the yucky part of all of it. She has such a sweet perspective on things and can relate having had a hard medical prognosis with one of her kids too. The situations may be different, but the emotions are the same. It feels good to talk to people that understand the hardship and also the beauty of it all. I kept talking to Jenny while Porter left for therapy. Luckily, in the afternoon he was more alert and himself. Dr. Brown came to my room and said she was there to take out the trach. Finally. I was so excited. They had talked to ENT and decided it was time for the trach to come out and they felt like with time, it would close on its own. They didn't want to suture it up. So I followed them down to where Porter was doing physical therapy. They explained to him what was going on and then before we knew it, that idiot trach was gone. Solid gone! It was a little anti-climatic, I guess I was hoping for some big change, but then again, it did just slip out the night before. It's so simple to slide that thing out. They put a gauze pad and tegaderm over the hole and called it a day. I am beyond thrilled that that thing is out of his trachea. Now we just pray hard that it heals up quickly and nicely. 

His doctors/residents really are so awesome and kind and have his best interest in mind. They talk to him like a friend and like they care about him. Hopefully some day Porter will open up a little more and let them into his world. He's more of a shrug the shoulders, yes/no person with them. I can't blame him. All he gets asked by them is, how are you feeling, does anything hurt, how did you sleep, what can we do for you today? Which gets old quickly. But are valid questions as they are trying to assess what they need to do for him. He sure has enjoyed his therapy team though. I see him lighten up when they come around. Ben, an occupational therapist, has been filling in for Thomas, and he's super fun and funny. He's a tease and a competitive type. He and Porter get each other. Ben had him do some functional therapy today - passing a ball from one side to the other. Grabbing and holding things, brushing his teeth. He's good with him. 

Porter SLEPT soundly and didn't have ANY secretions or gunk in his throat and I didn't hear him ALL NIGHT LONG. I woke up a couple of times to make sure he was ok because he was so quiet. I'm so happy to have that thing out of his neck. I know it will make a difference in so many aspects. It was such a torture for him. The only downside of it is - his voice has gotten airy again. With the stoma (the hole in his neck) not really having anything obstructing the air coming in and out besides a piece of gauze, he isn't able to vocalize as much. The bandage they put on his neck puffs up like a bull-frog when he talks -its quite comical. 

On Tuesday - Thomas had him watch a video of a guy with the same ability that Porter has right now, putting his shorts on. The video was about 25 minutes long. When it was over, Thomas asked him if he wanted to talk about it or if he just wanted to sit with it for awhile. Porter didn't say anything. I could see him blinking back some tears. I was very curious as to what was going through his head. Thomas reassured him that whatever he was feeling was okay. It's a lot to process. We went down to the gym to do some therapy. He was kind of quiet but did what he was asked. I like how Thomas validates him and goes at his speed. Later in the day, Porter said, "I was thinking about that video and wondering if that's what my life's going to be like. Do you think I will get more back than that?" I always wish I knew the best thing to say. I just said, "I am going to continue to believe you will. But, I know that you'll figure it all out with whatever you've got." I know that after watching that video I was thinking things like, 'He's amazing. I can't believe how much he can do' alongside thinking 'It took him 20 minutes to put on a pair of shorts and looks exhausting.' So I can't even imagine what it would be like for Porter mulling that all over in his head. I know it's going to take time to internalize and come to terms with his reality and let it all find it's place in his mind and heart. I am realizing that same thing for myself. I feel like there have been multiple moments where I have thought, 'Oh, I hadn't thought about how this or that will affect my life going forward.' I don't think we even know at this point, the reality of it all. And that's ok. We are taking it as it comes and some parts are better than we anticipated and some are a little more heart wrenching. Nonetheless, we are getting used to different.  

 

He did some awesome stuff in PT and OT on Tuesday. They had him learning to roll to each side and balance on his elbows. They are teaching him how to shift his weight and use momentum to move. He even laid flat on his stomach, which he hasn't done since his accident. I'm sure that felt weird. Jade gave him an awesome massage and they got him stretched out.

One of Porter's biggest fans (his 4 yr. old cousin) Jackson, brought him some lunch and even sat on his lap. We love Jackson and their whole family. He loves to hang out with the younger cousins and make them laugh. They sure made Porter smile. So did his cute, practically same age cousin, Tess, who came and entertained him all evening.

Porter seemed to have a lot of energy on Wednesday. He had some great therapy in the power assist manual wheelchair as we strolled around outside on the U of U campus for quite awhile. He is a good sport to keep going even when he's tired. Jade and Dan have a great way of motivating him and pushing him. He takes breaks and does silly things like tries to spit, only to have it dribble down his arm and onto his wheelchair, but then he is ready to keep trying hard. My parents showed up when he was heading to OT and so they got to see him do stuff on the mat. They did some more elbow work and sitting up. It was good for my parents to see what he's doing and get a feel for his world. I'm glad they dropped by. Some of his 2nd cousins came and said hi too and as I visited with my cousins, I felt soooo grateful that we chose Utah. I feel so blessed to have all of these people in our life. We have felt so much love and support. Paul's parents came and brought Nielsen's frozen custard and hung out with us. It was fun to see them and the custard hit. (hit=something is good, amazing, just what you wanted, delicious.)

I was looking at Porter as he fell asleep, on this night that marks one month from the day of his accident and I thought - 'He's so peaceful tonight.' No monitors, no tubes, no apparatuses, nothing but my strong, healing, beautiful boy and one little gauze pad over his neck. We've come so far. So many prayers have been answered, so many miracles along the way. We have met fantastic people. We have learned so much. I have had crash courses in respiratory therapy, physical therapy, occupational therapy, nursing, speech therapy and building a wheelchair. It's crazy to look back at pictures of Porter one month ago. Seems like another lifetime. Then at the same time, it feels like one second ago and sooo much has happened. I thank the Lord for sustaining me and giving me health and strength to be able to care for him and be by his side. I keep telling people that I'm probably bugging him, because let's be honest, what 16 yr. old wants to have his mom with him 24/7? The answer: Porter. Probably not Porter a month ago, but this cute guy keeps tabs on me now. Where are you going? When will you be back? I'm grateful I can be his security blanket.  

On Thursday morning, my cute friend Stacey came by to tell me they were leaving and their time at the rehab was over. I felt sad. I am so happy for them to be done and I know it is a good step, but it has felt good knowing someone else was here. She was so tender about leaving part of her momma heart here and she proceeded to take a darling gold necklace off her own neck and put it around mine. It is pretty much a choaker on me, but it was cute around her neck. haha It says HOPE on it. I love it. I know we will always share this place in time together.

 

It also helped to see her because I was feeling a little anxious because I was planning on going to Hyrum's graduation in Pocatello and I didn't know how it was going to feel to leave Porter and then also be back home and see a bunch of people. I had lined up Porter's friend, Preston, to come hang out with him while I was gone. I knew he wouldn't miss me a bit if Preston was here. We went about our normal morning routine - we had a different physical therapist who was great. He worked with Porter on strengthening his neck and back. He was very informative about programs that will be available to Porter. For Occupational therapy, Thomas had him at a table and work on picking up a drinking glass and bringing it to his mouth. He then brought him a snack size hersheys candy bar in the wrapper and laid it in front of him and said, "Go for it." Porter tried a few things and got it up to his mouth where he tried to hold it between his teeth and use his hands to rip the wrapper. He wasn't having much success, so Thomas let him use some cool scissors that have large flat handles on the end instead of holes for your fingers and they lay open, perpendicular on the table and he was able to slide the candy bar to the scissors and push down and cut the wrapper. Then Porter put it in his mouth and used his teeth to squish it out like a go-gurt. Thomas was laughing and said he'd never seen it done like that before. So on the next one, Porter cut it and held the wrapper so the chocolate slid out and he put the candy in his mouth. There is not a right way...whatever way works is the right way for Porter. 

After seeing that feat of awesomness, I told him goodbye and when I got to the elevator, I burst into tears. Yes, I'm tired. Yes, I'm worried he'll need me and I won't be here. Yes, I know he has nurses and docs at his disposal. Yes, it's my own issues and Yes, he'll be fine. I pulled myself together and headed to Pocatello. The drive was nice. I had a good visit with my sis-in-law when I started getting sleepy. I made it home and when I walked in - a whole new level of overwhelmed consumed me. I said to myself, "It doesn't matter, don't think about it right now." and I didn't. Paul had lined up a meeting to go see a house that is being built in our neighborhood and so we went to see it. It is beautiful. But, we would have to remodel what has already been done to make it work for Porter. Mainly - bathroom situation and doorways. We are still struggling to know what to do. Timing wise mostly. We will be done with in-patient therapy towards the end of July and then we are looking at doing out-patient therapy here in Salt Lake as well. That could be anywhere from 2 months to 2 years. Depending on what we see Porter's needs being. So, it's tricky to know when we should sell and when we will need something. And, along the way, it would be nice to be able to go home periodically and have somewhere that would accommodate Porter right away. It's all a little stressful. But I have faith that it will come together for us. 

Hyrum's graduation was wonderful and we are so proud of the way he has finished out this year, with all that has been on his plate, minus a mom taking care of him. He is awesome. He graduated with Highest honors and received an award for being an outstanding English student. He has grown up so much this year. He is a good, nice boy and I miss him. I could barely breathe when I saw him after and how handsome and grown up he looked and I just cried as he hugged me and kept hugging me. I was surprised at how many people I didn't see. We must have chosen a section where we didn't know too many people, which was fine by me. It was probably a tender mercy. The few people I did see were so sweet and encouraging and kind and sincere. I didn't have the floodgates erupt or anything. So that was good. I'm so glad I made it work to be there. 

When I called to see how Preston and Porter were doing, Preston said they were having fun and he fed him his dinner (which I totally forgot he'd have to do and is the sweetest thing to think about him doing) and they were just chillin'. So it is all good. 

We went to Wingers after graduation and enjoyed catching up with Hyrum a little. He had been at Bear Lake all week with his buddies and had a blast and had also been to Lagoon with the whole senior class for a graduation celebration. I loved hearing about it all. Then, he was off to a graduation party and so we said goodbye again. I ran by the house to gather a few things and to send Sawyer with my parents to the cabin. He is so excited it's hard to be sad about it. But, I will miss that kid. Then, our good friends Shannon and Dave dropped by for a quick hug and I loved seeing them. I feel so removed from my world, but feel so connected to everyone. I guess I feel connected because of the love and prayers, but I don't really know what's going on in everyone's lives. Which I miss. I decided to take a little cat nap before I started driving back to SLC since I was tired and didn't wake up until 2:30 am. Ooops. I snuck out and got on the road and arrived at the rehab about 5. I got a few hours of sleep in before therapy started at 9.

Physical therapy consisted of riding the bike and doing the power assist wheelchair. In occupational therapy they took him to a practice bedroom, and did his first manual move out of his chair and onto a bed and they had him practice rolling to each side and getting up on his elbows. It was impressive. I can see Porter going to great strides to make improvements. 

Paul had asked one of his friends, Matt Parkin, to come to the rehab and finishing getting off the glue from his braces coming off and polish those babies up. So Friday evening, after Paul arrived, he came. It was quite the team we had - Paul was squirting water as Matt used spinning instruments to get them smooth, while I held the flashlight. It was so nice of him to do that and great to catch up with him. Porter was happy to have the slippery teeth they talk about when you get your braces off.  

Porter has received lots of mail this week. The lady that drops it off keeps commenting that they've never had someone get so much mail. It's exciting. Some of the letters have come from coaches, people that served with Phoebe in her mission, cousins, and people that don't even know Porter and yet, they take the time to reach out to him and write him and encourage him and share their thoughts and feelings with him. A few of them have really touched Porter and made him emotional. Thank you for doing this small thing for him that means a lot. 

Saturday was mellow. Good PT and OT. Fun to have Paul around. He brings lots of humor to this all. Porter did a good job of feeding himself cheez-its this afternoon. He still has no use of his fingers, but if he extends his wrist up toward the ceiling, that causes his fingers to close together so he can pinch food and get it to his mouth. We are so grateful for the progress. We keep being reminded that this is a marathon. All the baby steps move us forward.  We'll take it. 

Just as we started eating dinner, Porter seemed to have some sudden mucus in his throat. He would try and cough, but it wasn't very productive. Little by little it seemed to be getting worse. He was having a difficult time breathing. I have been so happy not having to worry about his dumb secretions and trying to get them out. But, here we were back to where we left off. Except they won't let us use the cough assist machine because of how much progress we have made with his stoma and they were saying it would put too much pressure on it so we shouldn't use it. Ok, well then, how are we going to get his secretions out? hmmmm the respiratory therapist did some quad coughing with him, which is where someone puts their hand below your ribs and then while you cough they press in and up on your stomach area to help the diaphragm get the air through. Very similar to the Heimlich.  There was no real reason for the flair up, but the team of docs and nurses was awesome and dug a little into the research and found that he could in fact do a little cough assist and they also put him on some guaifenesin that should help with the secretions.  Luckily, he fell asleep and had a great nights rest. He is a trooper in stuff like that. He remains calm and hardly complains. 

It was a great week. Filled with lots of amazing people sending us gifts, bringing us food and smiles and love. We love all of it. We appreciate it and we LOVE YOU ALL! Someone in their note to Porter wrote: 'F.A.I.T.H. - Forward all issues to heaven'. I loved that. That kind of is what Faith is all about. Faith is believing and whatever you have an issue with...send it to heaven. It will get figured out there. The Lord is aware and will guide us through our issues.