Room with a view

Why do I think that my shirt choice will affect my day? I put on 2 different shirts this morning and just as I was about to walk out, I changed my mind and I went back and put on my new favorite shirt that my darling friends designed and made for us - The Power of Porter. (Oh and if any of you want one....which you should because they are so comfy and soft - you can buy one if you go to: www.cranky-tees-llc.myshopify.com and you can match with me.) I wanted to empower him today to have the strength to get through the surgery and do well in the transition. And I wanted to draw on his strength to help me get through the day. I was realizing yesterday that I had chosen not to do much responding to anyone by means of texting or social media and I hardly cried at all the day before. The second I talk to people that love Porter and love us and as they express genuine concern and love, I get so emotional. It's like I put on my brave game face and be strong for Porter and live the day with courage and fearlessness, so as to not worry him or those trying to teach us all that we have to learn. But then, when I open my heart to feel any of it or talk about the reality of it, my heart just falls apart. Not in a despair, all hope is gone way, just a heavy aching of sadness coupled with so much love. Don't get me wrong, I want to talk to everyone and anyone, but it is a little overwhelming. But PLEASE DON'T STOP texting and sending those encouraging words and upbeat messages to us. WE NEED THEM. They are the things that are getting us through each day and each new situation. We are continually lifted by you and LOVE hearing from you. Just know that if we don't respond, it's because we don't want to cry. :)

We only had a few minutes with him before they came down to get him for surgery. They took him earlier than we anticipated, which is great. They decided to keep him on the heparin medication because they felt like it was important to keep any clots from forming. The tracheostomy is a minimally invasive surgery and they didn't think it was worth turning off the heparin for it. It was hard watching them roll him away again on that bed with the millions of tubes coming out of him. Paul made a connection with the anesthesiologist and found out he works with his cousin at Portneuf. I feel like there have been so many people that have heard about our situation and then make a connection with someone here that is helping us. It really makes it feel like a small world. 

While they were gone to surgery, I was walking around the ICU and noticed an empty room across the way with a whole wall of windows - a room with a view. Something we didn't have in our room. So I asked the nurse if we could move into that room and she said "YES, let's do it." I was so excited and happy. I think that'll be such a game changer. It has a ton of natural light which will help Porters mood and mine. I know it will also help him keep his days and nights straight. It's a little bit littler of a room, but worth it. 

When they rolled Porter back to his room, I got teary seeing his darling face without tape and a tube. Wow, his body has been through a lot. How does it keep up with everything they are doing to it and putting into it. I'm so amazed at the human body. It's a miracle in and of itself. My sister sent me a really cool quote by Elder Corbridge.  He said, "We may all be taken back from time to time by the extraordinary—such as walking on water, multiplying bread and fish, raising the dead, translating gold plates with special lenses or a stone and hat, and the visitation of angels. Some people are hard-pressed to believe extraordinary things. While it is understandable that we may be challenged by the extraordinary, we shouldn’t be, because ordinary things are actually far more phenomenal.

The most phenomenal occurrences of all time and eternity—the most amazing wonders, the most astounding, awesome developments—are the most common and widely recognized. They include: I am; you are; we are; and all that we perceive exists as well, from subatomic particles to the farthest reaches of the cosmos and everything in between, including all of the wonders of life. Is there anything greater than those ordinary realities? No. Nothing else even comes close. You can’t begin to imagine, much less describe, anything greater than what already is.
In light of what is, nothing else should surprise us. It should be easy to believe that with God all things are possible.
The healing of the withered hand is not nearly as amazing as the existence of the hand in the first place. If it exists, it follows that it can certainly be fixed when it is broken. The greater event is not in its healing but in its creation.
More phenomenal than resurrection is birth. The greater wonder is not that life, having once existed, could come again but that it ever exists at all.
More amazing than raising the dead is that we live at all. A silent heart that beats again is not nearly as amazing as the heart that beats within your breast right now.
That one could see on a stone or through a special lens the modern translation of ancient text written on plates of gold is far less amazing than the human eye. The wonder is not what the human eye may see, rather, that it sees anything at all." 

I loved this. Such a cool way to see the grandeur of God.

They said everything went well in placing the trachea. They told us it would be super sensitive for a couple of days and that he'd be in some pain, I guess it takes a minute to get used to it. So, for those of you who are like me....clueless, let me tell you a little info. A tracheostomy is a procedure where they make a little slit in the base of the neck and then insert a tube into the trachea. This allows Porter to have an air passage to help him breathe with a ventilator for an extended period of time. Our hope is that he can quickly get off the ventilator and eventually have the tracheostomy tube removed. Generally, a tracheostomy prevents speaking because exhaled air goes out of the tracheostomy opening rather than up through your voice box. You need air to make noise. But there are devices and techniques for redirecting airflow enough to produce speech. I can't believe how much easier it is to communicate with him now. He can mouth full sentences and let us more what he's needing or feeling. Although, at this point, it is extremely tender still and quite painful for him to speak, so we have keep it short and sweet. As far as eating, today they will have a speech therapist come and do a swallow study with him to see if he is able to eat and drink through his mouth. While he's healing, it may be difficult to swallow because of having had that tube in his throat for a week and now having a foreign object in his trachea, it may be feel uncomfortable, but they say he should quickly get used to that. He winces every time he swallows right now. I can't imagine how that must feel. Strep throat times a billion maybe? Another thing is the air he breathes will be much drier because it's not going through his moist nose and throat before reaching his lungs. This can cause irritation, coughing and excess mucus coming out of the tube. Every once in awhile he has to have the tube suctioned to get that stuff out. It looks like its painful when they do that and he is full on coughing and doesn't make a noise. It is very weird to watch that happening with no sound. So, with all of that, we are encouraged that this is a great step in the right direction and according to the monitors, it looks like he is doing a great job of initiating most of his breaths which is great. 

He was able to sit up to almost a 90 degree angle yesterday and it was so cute because at one point he said, "Take my tie off?" and I was like, "what?" and he said, "My tie is choking me." So we explained to him what was going on and I got my phone out and let him look at himself and his expression was like, "What in the heck?" I'm sure that's what it feels like because they have these straps going around his neck to hold the tracheostomy tube in place and it's pretty tight. So we tried to loosen it a bit, but a little while later again he was asking us to take his church shirt off. I told him he was naked and had to show him again with my camera to prove it. All of it is so surreal. I think moving rooms mixed him up too because he asked "where am I" a couple of times. It was fun to see him look at the reflection in the glass doors of the outside world. I saw him staring at it a lot during the day. 

We facetimed a few of the kids (his siblings) today and they were all so happy to see his face and have a little more interaction with him. It's nice to see his personality coming back little by little. He is a mellow guy in normal life, but it's good to see him with more expression and feeling. He was awake a lot throughout the day. He was in a lot of pain at one point and the nurse was telling him he could have one drug that would be noticeable quickly or a drug that will take a minute to kick in but last longer and asked him which one he wanted. He just stared at her and said, "Just give me both," with a devious grin and raise of one eyebrow. To which, we both burst out laughing. He chose the longer lasting one. There were a couple times throughout the day that he was very cold. His lower jaw was full on shivering and he'd only stop when I would put my hand on his face. His body can't quite figure out the temperature thing. I hope that improves.

He really liked his respiratory therapist today. She was funny and sweet with him. Calling him "sugah" and "sweetness." He always likes to get his treatments because it clears his lungs and airways. They are still trying to regulate his bowel regimen. I'm learning that all of these things need to be on a schedule because it's quite a process. I am hoping he's up for his weird mom and dad doing all his stuff. Again - GET USED TO DIFFERENT. 

So, from here, we get him used to his trach tube, get him eating and drinking (I'm jumping and clapping when I say that) and get him more mobile. Paul and I are getting good at the tag-team therapy and Paul cracks jokes the whole time. It's nice to have him keeping things light. We are encouraged with where we stand and they are saying maybe 5-7 days if things go smoothly until we head to a rehab facility. 

Emma and Ryan brought me dinner at the hospital and we all sat in the parking lot together and talked. They are heading to Baltimore today to go do sales for the summer. I know it's hard to break away from here and what's going on, but I am confident it will be good for them to keep going forward with their plans. They will come visit as soon as we are to that point with Porter and we sure love FaceTime which makes it so easy to connect. 

I am so grateful for our families, immediate and extended. I am so grateful for all of our friends. I am so grateful for everyone that continues to reach out and think of the most thoughtful ways to bless our family. Things I would never think of to do for someone. So much generosity. So much kindness. We feel beyond blessed. The Summerill ward's young women (where we are staying), made a darling poster and sent balloons to Porter. I had a darling cousin drop by a few nights ago because she was in Vegas, and drop off a sweet note and balloon. Thank you everyone. We love you very much. Your love and support mean the world.

Remember that when you help another up a mountain, you are a little closer to the top yourself. Thomas S. Monson

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