No Pain No Gain

Good Evening!

Wyatt has been sent some goodies from friends and family. :)

This is Wyatt laughing at the Doctor after "hurting' daddy. Probably gives him some satisfaction. LOL

This picture I can see the difference in that I can actually see an open airway, generally it appears to stop right past his teeth.

Hard to see much of anything here.

This is the one and only time since surgery he slept on his own. He gave me 30 minutes. :) I am going to keep showing him this picture in hopes he will realize he can sleep on his own. LOL

Before I begin I have had a few people telling me they don't get updates emailed to them, or they can't comment.

On the right side you can subscribe by email or by something else (look at the left) Then you will automatically updates when I post.

Also you should be able to comment if you click on the no comments or the number of comments button.

Let me know if you are still having trouble. I am not an experience blogger, just a mom wanting to share a story of an amazing WARRIOR.

My thoughts are all over tonight. I am not sure where to start.

Praising God tonight for so many things.

My husband left this afternoon and it made me sad. I know he is only going to be gone for 28 hrs but he is my rock, he is my best friend, my parent partner, the love of my life and even though we don't always agree we are meant to be. When I think about being sad it makes me think how GREAT it has been to have him here when I needed him most. How fortunate it is that his schedule and care for the boys arranged itself for him to be here during the most difficult transition time. He called himself "Cinderfella" as he was doing laundry and picking up"and I was "Mama Nurse". Makes me smile as I write. If I could just get some Cinderfella at home. :)

Wyatt's airway has opened quite a bit based on today's x ray's (more on that later)

My boys are coming tomorrow to visit. I have never gone this long without them.

My mom is coming to stay with me for one week.

Wyatt has the best Dr. around and he is right across the street.

I have a place to stay with Wyatt that allows him to recover, provides all our daily needs and is right across the street from the hospital.

There are people from all over praying for our family, even people we have never met.

People visiting us here that know people from our local church offering support.

The list goes on, but the best place to start is by Giving Thanks to OUR LORD!

I wish I could report that Wyatt has perked up and back to his old happy self. The truth is that he is pretty miserable. The laughs and smiles are few and far between.(We try to capture these moments and share them with you on facebook or here.) We get a lot of moaning, crying and fighting, He demands to be touched, held, and looked at all the time, day and night. I am not complaining, I can't blame him, but it is exhausting. I make sure he gets every bit of attention he so desires making it difficult to do much of anything including sleep. As a mom I just want to make everything all better or help him to understand. I lay next to him everyday trying to explain in basic terms what is happening and why, I am pretty sure he is now rolling his eyes at me. If he could speak, I think it would be "Whatever mom". He does not understand one bit and he looks up at me basically saying "why did you do this to me" it's pretty pitiful. It reminds me of a story Tony's mom told me about putting Vernors in his bottle when he was little and his tummy was upset and then the bottle exploded and little baby Tony actually said "Why did you do that?" Too funny.

 He is able to walk pretty well now, but he can barely speak or swallow. We go through tons of bibs and suction him quite a bit. As I am writing this I am reminded why he is so miserable. The Doctor asked me today if it was what I expected, without hesitation my answer was an adamant "NO". He had told me kids bounce back quickly, and in Wyatt's surgical history he does bounce back so that is what I expected. I have now come to the realization that until this "halo" is off his head he is not going to be happy. The Doctor seems to think it's his age, he is old enough to know things aren't right, but not to understand why.

So when will this halo come off? That was the simple question of the day, however, in typical Wyatt fashion nothing is "Simple". The good news is that his airway via x-ray today showed a grand improvement and initially he had indicated we could stop turning. But after some out loud processing by the Dr, it was determined because of the complexity of his left side we should probably continue to turn the left side at the same rate and cut back to half on the right side. This will allow for him to have extra bone to mold and hopefully be able to provide a more symmetrical end result. If not we could have his left side slanted upward as there won't be enough to shape. I say this as this was a simple decision. There was a lot of back in forth about coming to this conclusion that I won't bore you with but we had the option to have another CT scan or for him to be put under again to take a look and see exactly how much bone they got to determine how to proceed, or we could have stopped and hoped for the best. I know Wyatt will need future CT scans but this didn't seem worthy of the radiation and putting a child with a compromised airway under just so we could stop turning seemed silly so we decided to turn the left side for the next week. Then we will sit for a week or week and a half and then removal the week of January 27th. During that procedure he will remove the device and mold his jaw to back to close to normal and the ENT will remove the adenoids again and determine if he needs to do a superglatplasty again. He will need to stay for 2-4 days then we can go home. We will need to go home on the feeding tube which I didn't even think about and am sort of bummed about. But the Doctor seemed to think he will bounce back quickly and be able to adapt to eating within a week or two. They just want to keep the NG tube to be sure he gets his nutritional needs.
Tony and I admittedly left a little more confused then we had hoped as many things were discussed that we weren't expecting like possible surgery on the upper jaw or ramus...
I was feeling sort of down but the more I think about it we were planning on being here till the end of January anyway and one of the reasons I like Dr. Gordon is his honesty. He told us we were looking at 5-6 jaw surgery's. I have known for a long time, I just can't think about the future now. I need to get through these next three weeks. Wyatt is not sleeping so we discussed trying Benadryl at night and if it doesn't work possible getting the pain team involved and looking at valume or something. The Oxi seemed to really upset his stomach.
So I will meet with Doc Gordon again on Monday and he will have to reset the pins so we can keep turning, we are running out of room. That will not be fun for him. :( I will hopefully be able to convince him of setting a surgery date which will make me feel better having an end game. :)
In the meantime, we keep swimming. Best advice a friend gave me when I told her I couldn't keep my head above water. "Just keep Swimming" It actually came from Dory on Finding Nemo.
Another Friend who has a child with special needs told me recently they have a motto "NO PAIN, NO GAIN".

I thought that was a great title for this post. If Wyatt would not have gone through this we would not have gained the airway we did and we would very possible be looking at needing a trach and feeding tube regularly for years. In fact the Doctor said today "It's better than a hole in the neck" That is something that stuck with Tony and I throughout the day. So let's make the next three weeks happen, and look forward to all we will GAIN in the End.

God tonight I ask that you continue to guide me and stay focused on my mission as a mother. Help me to not get caught up in the future and take things as they come. Please look after Wyatt and help us to determine if he is in pain or just uncomfortable, help him and I both to get a good night sleep. Thank you for getting Tony home safely with the boys and please look after them as they travel tomorrow with my mom to see Wyatt and I. Please help me to "keep swimming" . Thank you for providing for all our needs while we are here and putting people in places to assist where assistance is needed. You are an Awesome GOD. Amen

Love From Cincinnati,

Melissa and Wyatt on our own :)