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…