Family Time

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 is ready on his own. With the tube feeding we are having the same problem as well. They want to make sure Porter is getting all of the nutrition and calories he needs and therefore, they feed him through his feeding tube. However, they want him to get the feeding tube out. In order to do that, they need to know he is getting enough calories and sustenance. But he's never hungry because he's constantly being filled through the NG tube. Lots of times we are trying to choose the best option for his safety and comfort, but also want to achieve a desirable end result. I know we need to be patient. The body just sometimes need time. When I look back on the week, I realize how much he has already progressed. It's amazing. Baby steps that have made such a difference.

Paul and the boys are staying at the Ronald McDonald house which is so close. What an awesome thing that is - that there is a place for families to stay while they have loved ones in hospitals and rehabs. We feel lucky to have that option. Paul and Sawyer came to the hospital around 9. It feels really good to have them here. I'm excited for my boys to just be together. I asked Sawyer to go on a walk with me. He's always been my walking/hiking buddy. I LOVED talking to him and hearing about how he's dealing with this whole thing and what he's been doing. I was grateful to hear that a lot of people including his school had reached out to him and encouraged him to come talk to them if he felt like he was not knowing what to do or how to feel or needed someone to talk to. He told me how he's felt bad for Porter and is so sad this happened. He's bummed that things will be different for awhile. He and Porter spent a lot of time doing activities together and he was missing that. He said he had a feeling right when Porter jumped that something bad was going to happen but didn't realize it would be that bad. He seemed to me like he was processing it all okay and I felt like he is doing well. He's been golfing a lot and eating school lunch, which he's never done in his whole life. He said it's better than making his own lunch. Cute guy - I'm sure he misses my gourmet turkey and cheese sandwiches. haha It felt SOOOOOOOO good to be outside and to be hiking. Right outside our building there are tons of trails. We hiked to the U on the mountain which is right where I grew up. It felt good to be "home." 

Most of our day was spent taking turns in the room with Porter (only 2 at a time), visiting or watching a show, or going over missed memes and happenings at school. They helped feed him his lunch and asked him a bunch of questions. They got to meet the nurses and docs and watch what happens with Porter throughout the day. I took a great nap. We got out a humungous earthworm sized booger out of Porter's nose which was soooo relieving to him. (I have a pic if you want to see it - haha) He said its so frustrating to not be able to pick your nose.  That was a win. 

Porter and Paul had some good talk time. Paul is so good at the motivational type talking and power of positive thinking training. Porter was in a good mood and even started making some jokes about his situation. Paul had brought the painting I talked about in an earlier post - Boy Rising by Julia Blake. And it was a sacred moment as we shared that email and painting with him. I hope he could feel the confidence and potential we see in him and that we know Heavenly Father sees and has in him. His calling will be grand. It already is.

My brother, Matt and his darling pregnant wife Minkie and their son, Isaiah, surprised us this evening and came to visit. We haven't seen them in 2 years I believe. It was so wonderful to talk to them and feel of their love. Matt is so good at asking engaging questions and he did a great job of getting Porter to talk about various things. Dreams, patriarchal blessings, teenage years and stuff. I enjoyed his perspective and gave Porter some things to think about. I feel like it has helped everyone that has come to actually see and talk to Porter. He somehow gives you hope without really doing or saying anything. I think maybe just seeing him being himself reassures everyone. He's still Porter. He hasn't changed. 

I loved standing around his bed as a family to pray before Paul and the boys left for the night. There is such power in family and combining our faith. I just feel heaven close and know there are so many right beside us to comfort, lift and bless us. Some in the flesh, some in the spirit. My sister Jenny sent me this scripture: Matthew 18:20 "For where two or three are gathered together in my name, there am I in the midst of them." I can feel Him close.