not what we were expecting

Well, this time it is just taking me longer to process the information that we got at the last procedure. I decided to go ahead and let you all know since I still haven’t been able to accept it completely!
First of all, thank you all for your prayers! Levi did incredible… I got this idea to hide dinosaurs for him to find and I would tell him that the hospital could be a special place. He had so much fear and terror last time and when I would even mention the word hospital or doctor, he would almost start to cry! So, the dinosaurs were perfect. The anesthesiologist that carried him to the OR could not have done a better job, it was liked we had practiced it all! It was a night and day difference from last time. BUT, the other thing that was night and day difference was what the Doctor saw.
The part that had already started to heal at the last procedure looked good. But the other part of the graft had collapsed. This means his airway is half the size that it should be. If all this is is a major setback, then we are very disappointed. The Doctor was so shocked! He said that he was already getting excited about getting to tell us that the next procedure would be the beginning of the end and that we could start capping the trach(plugging it so he could use his mouth and nose to breathe… the last step). But instead he had to put back another stent in to try and save the graft, so that it can heal in the shape of an airway. When he first came back to tell us this, I wanted to just have a meltdown. The thought about having a stent in for 4-6 weeks was terrible. Remember, with this he could barely swallow his own saliva! But thankfully the Doctor thought of a different type of stent, it’s a hallow tube instead of a plug so it hasn’t bothered Levi. It was a big relief when we came home that night and Levi was able to eat.
So, we wait two more weeks and have to go back again to see if things are healing properly. The stent is somewhat see through. Unfortunately this is going to be a lot longer than we expected and hoped for. And of course, there is a possibility that he will need a second major surgery. Honestly I can’t even imagine having to go through with it.
It’s so hard to not be able to see light at the end of the tunnel, but for me it’s even harder to see light and have it taken away. I know that God wants me to rely on Him and to trust that He is in control. Of course I had all kinds of plans in my mind and I needed the timing to be perfect with no setbacks. Levi and Jesse have been talking about going to the ocean when Levi could swim like a fish, like nemo. We were hoping that we would all get to go before it got to cold. Mexico is ALWAYS on my heart. I try not to talk about it too much, and I never want to sound ungrateful for TN and what God has done here. We really want to go again for Christmas and ‘the plan’ had been to stay a little longer this time. Again, God is continuously teaching me not to make my own plans… a hard lesson.
Please do pray for healing for Levi’s airway… for God to show us his hand in all of this. Thank you

The next step

Thank you all so much for your prayers for Levi and our family! Those of you that are on facebook know that Wednesday’s procedure went well. We got there and Levi started getting a little nervous and was just uneasy. He was doing pretty good really until the moment I started taking his shoes off…. My poor baby was terrified! I have never seen him so hysterical, but really, if I thought that I was getting ready to go through the same thing again, I would have been doing the same thing! There is this miracle drug that they always have offered but that we had never needed. We had to wait to give it to him about 15 minutes before they took him back. Thankfully, everyone was not only on time but actually ahead of time! There was no calming him down but once he got that medicine… well… he was pretty happy! He did get a little nervous when he looked up and there were 10 medical people surrounding him. He was scheduled to go back at 3:15 but by 3:00 we were done! It was amazing. The doctor said everything looked great and even better than he expected. He wanted to see the rib graft still be white, because the stent was there there was really no room for it to heal. A yellow color would have been really bad, it would have meant that the graft was ‘dead’. But instead, he saw a little bit of red going through the back, and that meant that blood was starting to flow through it! The other one was nice and white. It felt so good to see the Doctor walking in the waiting room with a big smile! He did really well waking up and by 4:20 we were on our way home!
Immediately after surgery we noticed an enormous difference with his swallowing. He has been doing incredible! He was only a couple ounces lighter when they weighed him at the hospital(that was an answer to prayer and the only way I was going to keep the nutritionist off my back!), but these last couple of days he was been eating better than he ever has before! He also has started talking again, although he will only whisper. I don’t know if he doesn’t realize that he can talk louder, or if the fact that he’d been unable to make any sounds for three weeks made him forget how to speak in more than just a whisper. Anyway, it’s good that he’s talking and maybe once we start speech therapy he will start speaking up!
We already have our next two procedures scheduled, this Thursday at 4 pm and then the 28th at the same time. The Doctor wants to see continued healing and make sure that everything is moving in the right direction. And they will be removing the new scar tissue that shows up. They use a laser to remove it and it’s not very invasive.
Thank you all so much for your prayers! It’s hard to believe that we are so close to being free from the trach!!!

Tomorrow is a big, we have to be at Vanderbilt children's at 1:15. Its the next step to getting the trach out. They will be removing the stent that is in his upper airway. This is when we find out if the surgery was a success. Hopefully after that, he will be able to eat a lot better and we will start hearing his voice again. I have missed it so, so much! They will also be able to check and see how everything is healing. It most likely will still be a while before the actual trach comes out, but after this waiting wont be as bad!
Thank you all so much for your prayers and encouragement, we have also been so blessed by the meals that we've been getting! These last two weeks have been tiring, it's so great to have so many amazing people lifting us up!
Please be praying for peace over Levi, every time we even mention the hospital or doctors he gets very scared and sad.
Love you all!

Hey Everyone, I know I left you all hanging after the last update, sorry! We went to the pediatrician on Monday morning and it could not have gone better! Thank you all so much for your prayers and for your encouraging comments. Monday morning I had such a peace, I was prepared with a really good case but I didn’t even really need it! I had felt so attacked the days before and was really exhausted. We were there for less than an hour and the Pediatrician pretty much just said that she knew that I would take care of Levi and that I would do what was best for him. She said that she totally trusted my judgment and she had told that to the Doctor on call that was so rude. So, she agreed that there was no point in putting Levi through any more than is necessary. He was eating a little bit then and drinking very well. Every day he improves a little, he’s not eating much, but enough to keep him very active. He also has a little cold so that doesn’t help. This all reminds me of the days when we first left the hospital. Not much sleep do to needing to suction very often, difficulty getting enough food in the boys… although one major difference and what makes all this really hard is the fact that it now involves are whole family. The boys felt a lot of pain the first months of their lives. It was an incredible battle. But they didn't understand what was going on. They could be comforted with a good swaddling blanket and their pacifiers. They didn't know any different. We are so blessed that the boys are not used to pain and fear and that they have been so healthy and happy and active. So having to go through this now has been really hard on both of them. We know it’s only for a season and once this season is over, our lives are going to be so incredibly blessed, even more so than it already has been!!! I cannot wait…
Next week, on the 7th at 3:15 pm Levi will be getting the stent out. After this, things should improve a ton! Right now this is blocking his airway and touching his vocal cords, which is why he can’t speak or even make any noise, it’s also why he is having so much difficulty eating. Every time he swallows he can feel the stent stuck in his throat. Also, when the stent is removed we will know whether the surgery was a success or not. After that I’m not really sure what’s next. It seems like with my friends son who had this same surgery, it was a couple of procedures later that he actually got the trach out completely. With a couple of weeks in between each procedure. I haven’t really asked the Doctor because I know that every case is different. I’m going to be so excited when he says it’s time to pull it out!!!
Today I was listening to the boys play… well, it was more like Jesse talking nonstop asking and answering his own questions. But he would say something and then interpret what Levi was signing… for himself! it was really cute! I miss hearing Levi’s voice so, so much. We have been so blessed and have never taken it for granted. The fact that he has been communicating so well for so long is such a miracle!
The cut in his chest and above his trach are healing very well. He doesn’t complain about pain anymore ether, it’s made life a lot easier on both the boys since they are able to play a little rougher. The risk of aspirating food and liquids into Levi’s lungs will increase every day. Because the swelling is going down and the way the stent is in the way of the vocal cords. But we are trusting that everything will be fine and we are counting down the days for this next big step. Thank you all so much for being a part of this journey. We are blessed…