The Power of Porter

  Sunday was a peaceful quiet day. Porter didn't have any therapy or obligations. We let him sleep in and wake up when he wanted. We had to still take turns being in the room with him, which got quite annoying. I never wanted to miss out on conversations and I wanted the boys and Paul to spend as much time with him as possible. So we were playing musical rooms throughout the day. We got on to watch church via zoom and realized it was stake conference and we had missed the first 90 min. So that was too bad and a little frustrating. But we got to listen to Elder Michael Packer so that was nice. We had some great conversations throughout the day that were more about Porter and what he's thinking and feeling. He has been more vocal about what goes on in his head. He is brave. There is a lot to think about. His reality is a tough one to swallow at the moment. But, he is handling it amazingly. I told him that I need to start having him dictate to me what to write on the blog from now...

Porter didn't sleep well on Friday night. There continues to be a lot of secretions in his throat that he can't get up into his mouth because of the dang trach in his neck. I feel like his cough is getting stronger which is good, but its so frustrating for him to not have his coughs be productive. We use a machine called a cough assist. The nurses taught me how to use it, for when he gets too junky to breathe. I hold this mask over his mouth and nose and it blows air into his lungs and then pulls air out.  He usually is able to get some mucus up and out. BUT - they don't want us to use it too much because then it slows the process of his stoma healing since the machine is putting so much air pressure on the stoma. There are a few things that are a double edged sword like that. We don't want to use cough assist so his stoma can heal but he also needs to get rid of the secretions in his throat in order to pull his trach. But, we don't want to pull the trach until he i...

I'm sorry I'm behind on the days. Keeping a busy schedule here. I'm going to try and get a couple posts out today and get caught up.  I just have to start with a shout-out to Steve. I am not sure who it is, but last night when I was editing a post, I accidentally fell asleep, standing up, hahaha just kidding but it's not far from the truth, with my hand on the computer and must have pushed something that erased all but 2 paragraphs of one of my posts and I was sick to my stomach. I couldn't find it and I knew I wouldn't be able to re-write it and I totally didn't want to have to - so I said a prayer and had a thought to post a plea for help from anyone that may have it copied or have saved it. I went to sleep feeling sad and frustrated and when I woke up - STEVE - had commented and sent it to me. I truly was SOOOOOOO grateful and so reassured that Heavenly Father is still listening and still answering and still not sick of me even in the minute (pronounced m...

OK! This was the day we've been waiting and praying for. This is how it went down. Porter and I both got to sleep in a little. He must have had a decent night because when I woke up I felt like I had been asleep for about 3 months. He didn't need me in the night much so I just slept like a teenager. (People always say, 'slept like a baby' but if they were anything like my babies then they were up crying every 30 minutes - so I like to say, slept like a teenager because they know how to sleep.) We were excited and anxious for Miranda to walk in. We got Porter up and all ready in his wheelchair so when she got here we could get going. She was so enthusiastic when she came into the room and was like, "Today you're going to be eating some food buddy." As confident as she seems, I sure hope she's right. She told me I could come with them to the actual X-ray and watch. yay! We wheeled him down and into a cool machine. We got all suited up in our led outfits ...

Porter was a little restless in the night. He has a lot of phlegm and gunk that just sits in the back of his throat because he can't cough it up and so it just gurgles and sounds very junky. So, multiple times in the night he would cough and cough and cough and wasn't able to move the mucus. We would have to call the respiratory therapist to come in and suction him or give him a breathing treatment. Finally, at about 3:45am, from not having slept much, he was getting tired. He couldn't seem to relax so they gave him a touch of an anti-anxiety medication. He went right to sleep and didn't move until 8:30 when they came in to start the routine for the day. I was also grateful to get a few hours of shut eye. I have had so many people tell me to take care of myself and I am! But I AM going to continue to sleep here with him because he needs me and I know he likes knowing I'm right there to help with anything he needs. I'm just looking at it like new-born life and I ...

I get to sleep in Porter's room with him. They have this cool make shift couch/table that becomes a very comfy bed...kind of RV style. Unlike the PICU, they don't come in the room hardly at all unless he calls for them. So we had a pretty good nights rest. People started coming in the room about 8:30. They brought a whole schedule and it looked like we were going to be busy. Most of the therapists did assessments. Asking Porter lots of questions and testing him for movement and strength. They educated us on what will be happening and what to expect. We talked through some of our goals. We were excited about the possibilities they were presenting. The Occupational therapist was really good with Porter and he liked her. The Physical therapists were very engaging and encouraging, but it wasn't until the speech therapist, Miranda, came in that I could see him really start to come alive. She was funny and has a bubbly personality. She talked all about wanting to get him speaking...

I got a call in the morning from my cousin's husband, who works for AirMed in Utah, and he said, "I wasn't able to get on the team today because of another assignment, but you have the best team we have coming to pick Porter up today. I told all of them to take great care of him and just wanted you to know, he'll be in good hands." It was such a reassuring phone call and loved the personal touch it gave us. We got all packed up and loaded and headed to the hospital. We had decided to have Paul ride in the plane with Porter and I would drive up to Salt Lake. We got to the hospital and I grabbed a few more things from his room and gave him a big love and told him I'd see him in a few hours. I think it may have been worrying him or something because he seemed pretty mellow. I'm sure it's so scary thinking about a new situation or not knowing what it's going to be like. I'm a little anxious myself. I feel like this pediatric ICU has been my family ...