Sack of Potatoes

When I stepped onto the elevator this morning there was a man already on it. I got in and pushed the button for the PICU level and turned and looked at him and he said, "Wow, you look really tired." I don't know what came over me but I looked him straight in the eye and said, "Well, you're ugly and at least I can get some sleep." Just kidding. I didn't. I actually just had a knee jerk reaction and punched him in the nose. Just kidding. I didn't. But I wanted to. Truth be told, I smiled and said, "I am tireder than you'll ever know." I got off on the next floor. I should have taken the stairs.

I was frustrated when I got to Porter's room because Dale, the speech therapist, was walking out and said he had already done the swallow test with dye. I wanted to be there for that. Dale waited for Paul to get to the room and then he told us the results of his test. He gave Porter some green liquid and it came out of his tracheostomy site. Which means, when he swallows some of it is going down his windpipe into his trachea and into his lungs which is not good. They are not sure why it's happening. It could be a few things and they want to give him a couple of days to see if his breathing improves which could also help this situation. It may be associated with the lack of air flow through his larynx that rises to close the epiglottis. So, if his diaphragm starts pulling and pushing air better, it may be enough to make his swallow work, if that's the problem. If his breathing improves and still has leakage, then there is probably a different problem. They decided this could be a likely scenario so they will let him be for now, feeding him through the tube in his nose and do another test on Sunday. When we explained to Porter what was going on, he shook his head and tears came out of his closed eyes. My momma heart broke. It was almost as if he felt like another thing had been taken from him. He was so excited to get the tube out of his throat so he could eat and drink. And now he can't even do that. He was obviously discouraged. He asked, "So I'll never be able to eat or drink again?" We tried to reassure him that it was just another thing that will come with time and that his body needs to heal a little more. We explained the breathing thing to him and said, "If it's just a breathing thing, then let's get your diaphragm working." He was really not happy. I asked him if Paul could give him a blessing of comfort and healing. He seemed to like that idea and so Paul did. It was a beautiful blessing/pep-talk/validation moment. I felt such peace as he prayed and I had no doubt that Porter would be able to eventually eat and drink. 

Today was the day they started teaching me how to do everything. So they would walk me through various duties as they came up throughout the day. I'm a quick study. Hahahaha or so I want to be. I'm learning the bathroom regimen, the administration of meds, and the tracheostomy care. And the hardest part for me so far, is getting the stinking sterile gloves on without defiling them. I'm pretty sure we wasted 4 pairs of gloves because I kept touching things I shouldn't. The nurses and Paul are so patient with me - I know I'm kind of a spaz. I'm gaining confidence and know that practice makes perfect. There are so many details and there's timing of it all. I am finding that my queasy stomach is getting stronger and the prickly feeling you get when you see someone else's owies is lessening. I'm realizing that this boy is going to get really sick of me. I know he'll be grateful that he has me and Paul, but just like all 16 year old boys...I doubt he wants to hang out with his dumb mom 24/7. Well, too bad. He's stuck with me and I'm not going anywhere. 

His physical therapists came in today and said, "Let's get Porter sitting up." So we all washed up and figured out our game plan. Paul was on his head, the therapists were at his sides and I was on feet. We counted to three and then moved him to the side of the bed with his legs hanging down. A 170 lb sack of potatoes. I'm sure his head was spinning and his neck was throbbing and the back freedom felt relieving. He has been on his back for 10 solid days. He looked good and was doing great. Our goal was to hold him up like that for 10 minutes. He said he was dizzy, but that's about all. We took some pics and got him to smile a few times as I tried to manipulate his hands to do a peace sign or some fist in front of his mouth gesture he and his friends do. I've never asked what it means...I probably should. He did some awesome shoulder shrugs and pinching of his shoulder blades together. His breathing levels were good the whole time which was encouraging. He said "I'm slouching." Which was probably uncomfortable, so Paul traded places with the cute Philippine woman and got him a little more upright. After 10 minutes, we laid him down and got him all comfortable. He needed to rest up for his next big thing...no ventilator. 

The docs had decided to take him off the ventilator and see how he does. His levels had been really good for awhile and he was initiating all his breaths. So they took it off and put an oxygen mask over his trach tube. We all stood around just watching his chest and the monitors and his face. He was doing it and was killing it - mellow Porter style with zero facial expression. He was just chillin'. Who knows, maybe he was in his head determined and fighting to make it happen. His numbers were good and he didn't seem to be labored at all. They said it could be that he does it for awhile and then tires out and will need a break - kind of like exercising for the first time after you haven't for awhile OR that he will be fine. My fingers were crossed and my prayers were rushing to heaven. Please let him breathe on his own. And he did. He did great. By the time we left the hospital last night, he hadn't required a break or help or anything. He was doing it. Such a beautiful miracle and huge blessing. They will continue to monitor him through the night and hopefully, we just cleared that hurdle. I know there have been so many specific prayers said in his behalf that his diaphragm would start to regain function and allow him to breathe. Well, any of you that have offered that plea...God heard you and your prayers have been answered and we can't thank you enough for your faith. Tears. Prayers of gratitude. 

This evening we were informed that we will be heading to the University of Utah in-patient rehab on Monday morning at 10:00am via air medic or something like that. It feels right to be going there and we are excited for the next adventure. I know possibilities await.

It was a lot today. For all of us. But mostly for our boy. His mental game is going to be huge. As he is coming off all the meds and gets a clearer understanding of what's going on and what's to come, I know it's going to be a lot to process and I worry about him. I want him to go through all the stages and feel them. I want him to be able to express those feelings and work through them and I know he's got the fight in him - so I hope the "eye of the tiger" finds it's way to the surface sooner than later. For now, we will be strong for him and fight for him and believe in him and encourage him and most of all, LOVE him. It's inspiring to see God working in him and through him. I'm so grateful to have God on our side. He is the master healer. And I know He is not only healing Porter, but all of our hearts as well. 

Our gratitude for all of you is never-ending.