I want to be Wyatt when I grow up

Good Evening-

It has been such a long time since I have last posted about my Warrior here.

Let me start by saying we are truly surrounded by such amazing friends and family. I know we all get caught up in our lives and sometimes our lives can seem lonely but when you are in need and reminded daily that people are there to support you, your life does not seem lonely anymore. Suddenly you are reminded that you have an army of people ready to suit up and get the job done.
THANK YOU!!!!!

I wanted to write today because I feel like there is so much to say. The quick update and praise for the day goes like this- Wyatt got up and walked to the bathroom 2x and has actually gotten out of bed every time to go to the bathroom. He is the first kid they have seen get up and move this quickly after surgery. After a very long, stressful and painful two days I do believe we have the right pain management and medication to help him in all the areas we need. Not only has he suffered extreme pain, he has been crazy itchy and very nauseous which makes recovery very difficult. Today was rough, his entire face was swollen and black and blue and he was miserable. He did not want anyone in his room, let alone near him with anything. We are talking full out kicking, hitting and screaming with a wired shut mouth. It was hard to watch for both Tony and I. I am glad we have each other because we could not do this alone.I mean we could but it would be soooo hard. There are many times, I have to hide my face and just speak words of encouragement and understanding, even though I myself am crying with him. Tony will just place his hands on my shoulder and we have that moment of complete understanding.

Special announcement: As I was writing Wyatt told me he wanted to try some juice. Nobody thought he could but I did some reading today about using a syringe to allow kids some soft foods and juices. So I got the syringe and gave him a little juice. He drank it and grabbed the cup and the syringe and did it himself. AMAZING!!!! He tried with a straw but it is super hard to manipulate around the device and very limited space in his mouth to get the straw in. But he tried---ALL by himself. Right after the Doctors were doing their evening rounds and I told them and they couldn't believe it. :) That's my Wy guy. :)

Back to my original message-

If I could be anyone when I grow up, I would want to be Wyatt. He is fierce but gentle, he is determined but kind, he is funny but firm, he is brave but able to say he is scared. He has more FAITH  at age 6 more then most do in their entire lives. He prays and he comprehends. He is a WARRIOR!!!

I came in the room today to them needing to replace an IV that blew. To say he was not happy is a gross understatement. He cried, screamed and in a wired mouth said things like "your going to hurt me" "it's not okay" "I am scared" all while crying bloody tears, kicking and screaming. He felt helpless. I had a moment where I realized I needed him to know he had a voice and decided to change the way we went forward. He is dealing with very "adult" like stuff and I wanted him to make choices.

I had a discussion with him about how I promised I would listen to him and help him be a voice. I explained there are going to be things we have to do over the next few months that we just have to do. We aren't going to like them and they won't always be easy but they are non negotiable. But I promised that I would explain them to him before hand and I would make it as easy as I could because I did not want him to hurt.

I then told him there are things he can chose and I will allow him those choices and will listen and honor his wishes. he understood this, and as the day went on these are some of the decisions and choices this 6 year old made.

Wyatt has 2 IV's because he is on so much medication and some don't interact well with others so separate lines are needed. One of these lines hurts him anytime anyone put something in it. The nurses and Doctors for the last 24 hours basically told him he was crazy there was nothing wrong and it worked and he should just accept it. As promised I listened to him, and I told them this morning that although I understand the line is working- it is hurting him. Something is not right. He is fine with the other but this one makes him cry and scream so maybe we shouldn't use it. They all stopped and looked at me as if this was a revelation- but guess what they didn't use it. They went much of the day- pausing and changing things up to only use the one line. It was very difficult for them to do effectively and efficiently without messing up times...

So now Wyatt had a decision to make- I turned the TV off and reminded him about our conversation and told him he has done great making decisions and telling me his needs but now he has a big decision to make and its going to be hard. I explained that they really need to place a 2nd line to make the nurses jobs easier and his life more pain free and scheduled. But it would hurt him for a few minutes, I explained would get the best guy to do it but it would be a poke. I told him I thought it would be best for him but the decision was his and with tears in his eyes, he shook his head yes. And he sat still, he wasn't happy and he still verbalized his discomfort but he did not fight it and that is the moment I decided I want to be him when I grow up.

All day he got to decide if I could wash his face, Ice his face, put chap stick on, sit up, stand up and he could tell me when enough was enough and I would stop. He also had moments that he had to be suctioned, medicine had to be given, feeding tube had to be moved and I explained there was not choice and he understood. At 6 years old..... I

State of the state- We are still in the Pediatric Intensive Care Unit and will probably be here until Monday. Then we will move to the main floor. I realized today that I was crazy to think I could leave Sunday and even crazier to think one of us was going to go home today.... Thank goodness for all those especially my Mom and Pat who have managed the house all week with 4 boys going 4 different directions. Anyway- they agreed to stay through Monday now- giving me another day with my boy and hopefully transition to the main floor. Tony will stay through the duration but I will be returning to work Wed and try to balance everyone else and work for a few days.

The hospital team here continues to amaze us- so kind and caring. You actually feel like you are the only one they are caring for. It's crazy - and I have been to a lot of hospitals.

I know I have said it many times before but the Ronald McDonald House charities are so special. They provide a home away from home and fresh cooked meals for families daily so they don't have to worry about food and eating in a hospital for long periods of time is expensive. They have all the toiletries you could need, caring staff to talk to and play rooms for kids. If you ever can volunteer to cook a meal or drop of donations like toiletries, snacks... please consider the Ronald McDonald house.

Thanks for listening to how AMAZING my Warrior is- I know I am a little biased. :)

Pray that we have really found the correct medications to effectively manage his discomfort and nausea. Pray for rest for all of us, and understanding from the older kids as we extend our trip another day or 2. Wyatt has been hypertensive today so lets pray that regulates itself and the bleeding continues to lesson and that I get even half of the bravery this child has.

Have a good night- until next time. :)

Love from Dayton

For those not on Facebook.

Happy Thursday- we are bringing back this page as we have some updates and prayer requests.
1. Wyatt's Asthma has been really bad the last 2 days. Pray he gets some relief this evening so we can all sleep well.
2. A week ago Wyatt had what appeared to be a blind seizure while in speech class at school. We have an eeg scheduled next week. Followed by a neurology appt the following week. Please pray this all checks out well.
3. Most importantly over the last few weeks we found out the need for Wyatt to have his bone graft for his jaw was more immediate as he has no space in his mouth to breathe. He is breathing primarily through his nose. After further discussion it was decided to have another jaw distraction on the opposite side to losen the mustle and open the mouth wider to make the graft surgery easier. This is the surgery where they use the Red device that prevents him from eating and talking and we a
Screw the pin in each night to widen the mouth. He had this once before and it was so hard on him. After he has this on for 4-6 weeks we will then have the free flap scapula graft where they will take bone from the shoulder to build the jaw. This a long articulate surgery... :( with another 4-6 week recovery. Wyatt has decided to get it done now in hopes to be recovered by end of June and enjoy the rest of summer. He has been very nervous about this for a couple weeks which is hard. We gave him pros and cons for when and let him decide. His teacher at school is amazing and offered to come to the home for his in home schooling 2 hours a week through the end. The first  surgery is now scheduled in ohio with Dr. Gordon april 18th, we will leave the 17th for orientation and to get settled. We have to work out care for the other 4 boys for a week but the rest of the recovery we will do from home. There are a lot of variables that need to work to make this work out accordingly. We still need one more ctscan next week of the scapula and approvals... please pray it all comes together like it always does and peace for Wyatt and the family as everyone cares ans worries for eachother.
We will keep you updated as more information comes available.
4. We have decides to celebrate Wyatts bday april 14th so he can enjoy cake and ice cream with friends and famiy before surgery.
Sorry for the book and thanks ahead of time for prayers. #blessed