My Super Wy right outside the RMH
Right after surgery
Today the swelling is much worse
This is what is stitched into these beautiful winged blankets.
This is his completely CLOSED airway after breathing.
This is the small airway opening to begin with. Google what it should look like- there should be much more space.
I know so many of you have been following on Facebook, sending nice texts, emails and comments and although we may not have responded to each one we were uplifted by them all. It is truly magical to see how God works in our lives and the true power of prayer. So keep the prayers and uplifting texts coming. :)
I have always been honest that the biggest struggle for me all along is the fact that visually Wyatt was a normal if not high functioning 2.5 year old. He was able to do anything he wanted with an amazing personality that would put a smile on anyone's face when they see him. (It's the truth, not just because I am his mom). I couldn't grasp why I would want to go in and change this with a serious surgery. I knew what everyone told me, I saw the scans, did the research and heard the stories but none of those people knew Wyatt. As I drove to the hospital yesterday morning yesterday morning I started thinking about Wyatt's surgery and all the things that aligned for us and for him to make this date and this time work for everyone. I won't bore you with the details but it is everything from care for the older boys, insurance, work schedules, school schedules, getting into Ronald McDonald House without being placed on a waiting list (and our room # is my favorite # of all #24) and the list goes on. It was at this moment a different peace came over me. I pictured God removing obstacles and clear0ing this path for this to be the day and nobody or nothing would get in the way. That is POWERFULL. God is POWERFULL!!!!
With this being said I was still one nervous mama anxiously awaiting to see her baby boy. I let go of him outside the operating room with a whole lotta tears in my eyes and Kleenex in the pocket. But as we walked that hall I told Wyatt to repeat after me " Dear God, hold my hands, protect me, look after the Doctors and keep me safe." Wyatt repeated that prayer followed by I love you mama.
Wyatt's surgery was about an hour and half longer than they told us so I was a wreck pacing floors and checking the board every 5 minutes and it took a lot to wait 5 minutes. LOL. Thank goodness for a calm headed husband who would make light of it every time asking if it said they went to McDonalds or Chuckee Cheese. I say thank goodness today, yesterday I couldn't understand why he was so calm and funny. I don't even need to right the next sentence, you all know that your significant other is exactly what you need him/her to be when you need them to be that. Tony and I are 100% meant to be together because we balance each other out and make each other laugh in the craziest situations. Sometimes it's hard to see at the moment but afterward its clear as day.
Surgery was successful but they had a ton of issues with the airway so the procedures that were supposed to be 15 minutes ended up being almost 2 hours and then the distraction and ear tags were only the 1.5 hours he suggested. We obviously new Wyatt had a complicated airway and so did they, but it was worse than anticipated. I am posting 2 pictures. 1 shows his narrow airway and the other is as he takes a breath and the airway completed closes. The pulmonologist was AMAZED Wyatt breathes on his own and doesn't have assistance. He kept showing us more pictures from the scope (which they could only do the flexible scope as the ridged scope would not go done) and he was getting excited to talk about "how interesting" Wyatt was. After the 3rd time, I politely explained that interesting is not a word a mom likes to hear when talking about her child's airway. The issue is his adenoids have grown back and he has signs of that Larengomalicia which is what he had his first surgery on again. Basically it is floppy cartilage that blocks his airway. The end result is that we need to see if this jaw distraction will open the airway enough or if we will need to look at having another superglotpasty and adenoid removal.Also this was that added reassurance that this surgery was a necessity. They will look again in 4-5 weeks when the distractors are removed. They had to intubate Wyatt using fiber optics which luckily they were prepared with and another reason why we choose Cinncinetti. They initially told us they were keeping Wyatt on the breathing tube till Sunday or Monday to be safe and that they would keep him sedated in the PICU which again we were prepared for.
When we got to the ICU to see him they told us they felt like they could excubate because his lungs were clear and he was on little assistance. This is when things changed for me and my "calm" husband. They wanted to excubate but did not know how he would do so they needed to be prepared to reintubate and they needed crash cart, critical airway carts, tubes, wire cutters, and like 8 Doctors and 5 nurses to be present and they needed him to wake up from anesthesia. STRESSFULL isn't even adequate. It was not a peaceful environment for us as parents let alone poor Wyatt just waking up. I kept asking why rush it, would it be better the next day but they seemed to think no matter when it would be stressful. So picture about 16 people waiting right outside the room with instruments and carts... waiting for the moment your son first wakes up from anesthesia. It was a scene from the movies.
I knelt down to my baby boy and told him as loud and proud Gods got it. Be strong and God will take care of the rest. Guess what.... HE DID!!!! Excubation successful only needed oxygen and a lot of love.
Today we were able to leave the PICU and go to a critical airway unit- same floor just another hall over. To be honest I like it a lot better because Wyatt is patient # 2 in that wing which means he gets lots of attention, although anytime someone comes in he puts up his hands and shoes them away.
This my friends is the Wyatt personality I know and love. He is in a ton of pain and as you can see from the pictures, he looks horrible and feels every bit of it. He is REALLY swollen and wants his mama to hold him. He wants to place his head on my shoulders like we always do but can't because of the contraption, it melts my heart every time.
We are managing his pain and starting NG tube feeds, however, in true WARRIOR fashion he is asking to eat and drink which they say is rare and an excellent sign that he may be able to do one or both during this procedure and he is talking which they can't believe either. He asks for me, and Dora and shows me his owies. :(
This child is a TRUE BLESSING, my heart lights up talking about him and tears stream down my face when I think of all he has been through and continues to fight through.
No FEAR just FAITH!!!!
I am actually at the RMH right now and I am going to try to sleep for the first time in 48 hours. Wyatt let me go for the first time in 48 hours lol. Hard to leave but looking forward to seeing a little more of my true WARRIOR bright and early in the morning. Pray for Daddy who was a little nervous knowing Wyatt's mama attachment.
Joe and Noah are doing amazing and having a blast with family, they have been spoiled but they deserve it. I love them and am so proud of them. They pray for Wyatt and the first thing they ask is how he is doing. Love those boys.:)
I know this is amazingly long- but may I add one more blessing. The Ronald McDonald House is amazing. The things they provide to make you feel at home are lovely. They have these winged blankets for adults and kids (of course Wyatt and I match) but they are stitched with the saying above and you simply wrap yourself and your child with them. Amazing. Breakfast, lunch, dinner, amazing volunteers, workers, families and the list goes on. If you ever get a chance support your local house, go and make a meal for families....This will be something we do forever as a family and I hope others will as well.
God tonight I start by saying THANK YOU, you are AWESOME~
Please continue to look after Wyatt and heal him day by day, open his airway and show us the miracle only you can provide. Help me to rest so I may be ready to take on this feisty boy tomorrow and remind me that he will be okay and I am doing all he needs at the moment. Please look after Tony and help him to have a stress free night with his little guy and continue to look after Joey and Noah. Help me to be the best mom I can be - in your name. AMEN
Thank you all for being part of Wyatt's Warriors.
God Bless,
Melissa and crew :)
