I am BRAVE, I am a FIGHTER, I am HIS

Another beautiful day in Vegas baby! Paul and I walked the neighborhood this morning early and talked and cried and had a few things come into our minds that made us realize that we have been being prepared for this. My friend, Nikki, texted me yesterday and she said just that...."I am overwhelmed with memories of you and Paul and your family and thinking somehow you have been preparing to deal with this challenge." Our house choice in Pocatello sure doesn't reflect that. Hahahaha. (We live in a multi-level house with stairs going from basically each room - so that's not good. But we will figure that all out.) It's interesting that all of those things have only been noticed in retrospect though. The hand of the Lord in our lives. He is in the details. 

We were finally able to meet Joni Robison, the owner of the home in which we are staying. She had been out of town and she embraced me and just let me cry. She and her husband, Dave, have been such good sports with us spreading out into every room of their home, overstocking their fridge, breaking their dishes and staying up late talking and watching movies. They have made us feel like their home is our home. It's wonderful. Oh, and yesterday, I guess the boys were all playing a game in the pool in their backyard and my girls said they couldn't even watch them. They would gasp every time someone did anything. I couldn't believe they were even wanting to play in the pool. PTSD FOR SURE!!

Porter was happy about his poster that says, I am BRAVE, I am a FIGHTER, and I am HIS and balloons from the family and got wide eyes when we showed him his fan mail from all of his groupies. He's a straight up celebrity now. I brought his phone with me that hasn't been touched since Monday morning. And he has 764 unopened messages. The outpouring of love is awesome. He seemed to be in good spirits this morning and we started the day off hopeful with what knowledge we had at that point.

Report was great this morning. Porter had a good night. His levels were good and they had very minimally started lowering the amount of inspired oxygen he was getting and he seemed to be tolerating it. Also, his blood was looking good with the heparin and they had lowered his norepinephrine significantly. So they talked about doing a few breathing tests to see how long he could go breathing on his own and do a diaphragmatic test under fluoroscopy which would tell them how his diaphragm is working. Unfortunately, and to our disheartenment, he pretty much bombed all the testing. There was no air flow when they took him off the respirator and he was using too many excessory muscles which tired him out after about 2 min. And then during the diaphragm testing, it was the same. His diaphragm is not receiving signals from the spinal cord because of where his injury was. Which is such a bummer. BUT - we know this is something that can change and improve with time. Having that info, and after consulting with a pulmonary doctor and ENT, they have decided to do a tracheostomy. This will allow him to get the tube out (which will be awesome) and be able to communicate better and eat and drink and at least maybe sit on the side of the bed with help or possibly a recliner. While this wasn't the outcome we had hoped for, it'll be a good way to keep improving. He was very tired and in pain when they got back - so I turned on his favorite play list and wiped his face with a warm cloth and rubbed his ears and let him rest. OH I LOVE THIS BOY! I often wonder how much he is understanding and remembering. I wonder what he's thinking about and where he goes in his head. He seemed to be smiling more today so I hope he's ok. 

Paul took the boys on a bikeride while Porter rested and now I find myself getting more anxious than I've ever been, thinking about them doing adventurous things. I have never been like that - I like adventure. I'm a daredevil....but I can't let anyone else get hurt. They don't know I feel that way....I'm just saying it here. They had a great time and I'm glad they went and everybody came back safely. Porter and I just hung out while I massaged his legs and tickled his chest. He has always been one that loves me to dote on him. He sure is getting spoiled. 

The ENT doctor came in and talked to me and did an assessment on Porter and told me they would try to get him in this weekend. There is a lot to coordinate with the attending physician and the ENT and the availability of the OR and making sure he's been off the heparin for 8 hours. It sounds like it may happen on Sunday if all goes as planned. They are wanting him to have a mellow day tomorrow and rest and gear up for another procedure. 

Paul brought me some dinner and we went into a little side room and he helped me get situated and then he went down the hall to be with Porter and that's when.....I lost it. I could NOT stop crying. I was really really REALLY overwhelmed with emotions of worry, anger, disbelief in our situation, helplessness, concern, guilt, but overriding it all was the feeling of a breaking heart. My heart is broken. It feels like every hope and dream and desire for my child's life is being shattered. The grief is real. It's heavy. It's really heavy. So I dropped my head and I prayed, for about 30 min. Telling my Heavenly Father everything - pleading for his grace. Then in that moment, my sweet cousin Irene texted me and said, "YOU CAN DO THIS!" I pulled up my big girl pants and blew my nose and marched right back into the refiner's fire. 

Phoebe shared a beautiful post on her instagram account today:

this morning i picked out a random conference talk to read and i came across the story of peter and john healing a lame man. they told him to “rise up and walk”, to which he then “stood, and walked, and entered with them into the temple, walking, and leaping, and praising God”. never before has this story meant so much to me.

Mormon 9:18-19 says, “And who shall say that Jesus Christ did not do many mighty miracles? And there were many mighty miracles wrought by the hands of the apostles.
And if there were miracles wrought then, why has God ceased to be a God of miracles and yet be an unchangeable Being? And behold, I say unto you he changeth not; if so he would cease to be God; and he CEASETH NOT to be God, and IS a God of miracles”.

i know that miracles are possible through jesus christ. let us doubt nothing, keep believing, and pray for our sweet portsie!

http://bit.ly/porterbrinton