Chuckie the trach doll

During rounds yesterday morning, we were told that he was peeing way too much. They weren't quite sure what was causing it. Was he still sodium flushing or is his body just getting rid of all the fluids he's been getting? Could it be something else? They are doing a few things to figure it out. Everything else seems good. They changed his nasal tube today to a smaller and more flexible one and put it in the other nostril. But the best news ever was, PORTER WENT THE WHOLE NIGHT WITH NO VENT. Yipee! That is so huge. Such an answer to prayers. So many prayers. They were encouraged with his breathing so they decided to do the swallow study this morning instead of tomorrow. I stood at the foot of his bed with fingers crossed and a prayer in my heart. A speech therapist came in and gave him some green dye, which got all over his lips, and he swallowed nicely and nothing came out the first spoonful, so they gave him another spoonful. To our dismay  - out came the green dye from his stoma (Tracheostomy site). SERIOUSLY!!!!! It just seems so unfair. All this is happening and food and drink is a happy, comforting thing and he can't have ANY! My heart just sank, but probably not as deep as his did. I didn't even want to look in his eyes. But I had to....they were sad ...discourged ...frustrated ....mad...but just as quickly as the negative feelings were finding their way into his heart, the speech pathologist said, "I really think we need to do a barium swallow test under floroscopy. I think we need to see what's going on with the muscles and nerves, because his swallowing is good." She sounded so encouraged and felt like they would have a way better idea of what's going on if they did this test. Porter's eyes had a glimpse of hope. I'm sure he wants to find out more than anyone. They came fairly soon after and got Porter all situated in a geriatric chair and took him away. They were gone for about 30 minutes and returned with encouraging news. His swallow is good. The muscles and nerves look good. There is significant swelling which is causing the epiglottis to hit the back wall of the throat instead of closing. They believe that overtime, the swelling will go down and his muscles will strengthen to open the space more to give room for the epiglottis to close. They will give him some exercises to do to help.They really made us feel like it will come...with time. So we are going to put on our patience pants and keep praying. 

We have had a good day hanging out and visiting. Porter watched another movie called 7 yards which is about a football player that suffered a very similar injury. The story follows his perseverance and dedication to get better. Hours and hours of therapy. So much work. It was hard to watch, but encouraging and exciting. All of these stories we hear and people we have talked to...NONE would change it or go back because of who they have become and what they have learned. I know that's probably not the case for everyone, but I believe this will be the case for Porter. He will rise to the occasion and make the most of his situation. I know he has the grit!

We gave Porter a spa day. We took the bandages off his head and washed his hair and scratched his head for probably a good 1/2 hour. He was in heaven. He kept saying, "This feels so good." Then we washed his face and cleaned out his ears and washed his chest. We wiped down his whole body, which they do every night, but we helped. We brushed his teeth and even put deodorant on him. I washed between his toes and fingers and rubbed lotion on his hands. They told us we could leave the bandages off his head. I'm sure that will feel good. So he's all clean. 

PT and OT came in and introduced a few new things to Porter. They gave him a contraption to put on his hand so that he can put things in it - like a toothbrush or spoon/fork. They also tried to help him work on his core. Im sure it's tiring for Porter. He's a good sport and does his best. I haven't asked him, but I wonder if he kind of shakes his head when we are cheering for the littlest thing and if he feels like, "seriously?....yay...I turned my hand over...cool (with a sarcastic tone)" or if he genuinely also feels the excitement of seeing these little steps and improvements. I want soooo much to be in his head. To know how he's feeling, what he's thinking. With our limited communication, I don't feel like I can really know how it's affecting him or what kind of things go on inside that. I have felt like he was in a pretty good mood yesterday and some of his reactions were sassy and full of his personality. The child life specialists have given us a doll that has a tracheostomy to use as a teaching tool and we call it Chuckie the trach doll. We have gotten a few smiles out of Porter with it. Paul has it show up in his face as he's waking up or sit on his shoulder. Porter continues to have vivid scary dreams. Maybe it's because of Chuckie. 

We are looking forward to Utah. We will be glad to be close to family and friends. We feel like things are heading in the right direction. We know there are long, rough days ahead, but we're up for the adventure. Once again, thank you! THANK YOU for everything. The messages, the donations, the fund raisers, the cards, the notes, the emails, the food, the rides, the reaching out, the hundreds of acts of service that our family is receiving. My mom said it best when she said it's consecration in action. Everyone giving all that they can and all that they have to help each other. Hearts knit together in unity and love. Im so grateful to have you along side of us as we navigate this road. All my love to each of you.