Trach change

I get to sleep in Porter's room with him. They have this cool make shift couch/table that becomes a very comfy bed...kind of RV style. Unlike the PICU, they don't come in the room hardly at all unless he calls for them. So we had a pretty good nights rest.

People started coming in the room about 8:30. They brought a whole schedule and it looked like we were going to be busy. Most of the therapists did assessments. Asking Porter lots of questions and testing him for movement and strength. They educated us on what will be happening and what to expect. We talked through some of our goals. We were excited about the possibilities they were presenting.

The Occupational therapist was really good with Porter and he liked her. The Physical therapists were very engaging and encouraging, but it wasn't until the speech therapist, Miranda, came in that I could see him really start to come alive. She was funny and has a bubbly personality. She talked all about wanting to get him speaking, eating, and drinking. Porter is highly motivated for all of those things to happen as well. After her evaluation and doing a couple tests by the side of his bed, she felt like the size of his trach was too big and she wanted to have it changed. She didn't waste any time and she got on the phone with the pulmonologist in the building next to this one and asked her to come over and get it done. She told Porter she was going to have him speaking by the end of the day. About 30 minutes later, everyone was on board and they changed Porter's trach from a size 6 to a 4, which took all of 45 seconds. I think that may have been the grossest thing I have ever seen. Yikes. I'm not sure if what they pulled out of his neck was worse, or the actual hole or stoma in his neck. I kinda couldn't believe my eyes. Something I can't unsee. (I have actual footage of that if anyone is interested). They got him all situated and Porter could instantly feel a difference.

 The smaller trach allows air to move around the trach and up into his vocal cords. They put a cap on the end of the trach and told Porter to try and talk. There was a little whisper, but not much vocalization. At first, we were kind of bummed, but Miranda reassured us that it wouldn't take long for his voice to come back. They left the cap on the end of his trach which acts as though he has no trach at all. Which is the first step to getting the trach removed. As soon as Porter is able to vocalize, eat and drink, and move his secretions from his lungs and trachea into his mouth and spit them out, he can get the trach out. We want to see that happen by next week. The only problem with changing the trach is the mucus and phlegm that it created in the process. Porter was having a terrible time trying to get his lungs, throat and trach cleared out. It's very frustrating to have constant gunk hanging out in the back of your throat and not be able to move it. He literally purrrrrrrrs. This whole process wore Porter out and finally he fell asleep. I sat down in a chair across the room and was working on this blog, when all of a sudden I heard, "Mommy, momma..." I jumped out of my chair and ran to his bedside. He said, "Did I wake you up?" - I said, "you said momma!" I can't believe it. I'm so happy he can talk. And all of a sudden, his personality came back. I can't imagine not talking for 2 solid weeks. He was smiling and we were laughing at how he would run out of breath when he tried to say a whole sentence and he'd have to pause and get another breath in before he could finish it. Such a joyous moment. THE BEST! I looked up towards the ceiling and just gave an audible - 'Thank you!' God is good. So so good. He is hearing our prayers and blessing Porter so much. 

Porter was supposed to have another session of physical therapy, but he wasn't up for it. The next few hours were filled with intermittent talking and coughing. It has been really fun to ask him questions I've been wondering about and hear some of his thoughts and feelings. On the other hand, the coughing isn't very fun. With his stoma being somewhat open still around the new trach, a lot of air escapes through it. This makes it difficult to have productive coughs. But, I know he'll figure it out. 

One huge bonus about being in Salt Lake, is we are close to so many people we love. We have had a few visitors come up and say hi to Porter and bring his mommy some YUMMY food. It feels so good to get some hugs and validation and reassurance and lots and lots of encouraging, uplifting words. Porter is still a little mellow around people and doesn't have a lot to say, but after they leave I ask him, "was that ok?" and every time so far, he's been like, "it was good to see them." (One helpful tip - if you do come to see him, do not ask - How are you? He told me that is his worst question. haahahah) One thing that is very frustrating is the fact that no one under 18 is allowed to come see him because of... the disease that shall remain nameless. I had to get special permission for Sawyer to be able to see him. I am going to work on maybe seeing if I can get clearance on a friend/cousin a week or something. Maybe I could play the 'I know the thing that would help the most in his recovery is seeing his peers' card with the counselor and maybe she could put it in her orders as part of his therapy. In all reality, that probably would be the best therapy for him. And getting outside. We had a fun family facetime call. We wanted to show off Porter's voice. The kids were asking him to say all of his phrases. It felt good for them to have some interaction with him. It's been hard the last couple of weeks to just talk AT him instead of with him. It made my momma heart happy to see all my kids faces on that screen. Oh I miss them. 

Porters first tennis coach, Chloe Stoddard, is an awesome videographer and she reached out to Porter's family and friends and put together the most amazing video for him. Porter and I watched it on a big screen and it felt like all of you were in the room with us, cheering him on and making him laugh and loving him. We laughed and cried and felt the spirit as each of your faces were filled with love and hope for him. Thank you for taking the time to make that for him. I know that is something we will treasure FOREVER! Everyone needs a video from the people they love telling them how awesome they are. Let's always try and cheer for each other and compliment each other and BUILD each other up. We all have hard things and we all need people on our team. Whatever you're facing - You've got this! You are amazing and you can DO HARD THINGS! Heavenly Father is just waiting and wanting to love you and bless you. He hears your prayers. If you don't believe it....go back to the beginning of this story and start again. 

Here is the link to the video Chloe made for Porter. 

https://youtu.be/OFsvfSvTzig

I'm sorry I have been busy and haven't been as good at getting these updates out. Thanks for the continuous love and support and I know you're all still praying because miracles are happening every day.