More Changes Are Coming

After a few miserable weeks, we've finally had some encouraging days! Deklyn did get his trach changed to a longer tube hoping it would go past the narrowing in his trachea. The change went smoothly, however a scope showed that his trachea still narrowed after the new trach. I was very discouraged and felt very lost. I was really hoping this change would be a step towards big changes for Deklyn. The doctor told me that they wanted to give this new trach some time and see if it seemed better than last one. If it wasn't they would get in an even longer trach and if that didn't work we'd have to talk about other ways of fixing his airway which had many complications along with that.

The doctor also told me there were 3 things we needed to look at to see that this trach is doing better than the last, 1 - He's needing less oxygen 2- The pressures on his vent go down 3- He doesn't need his neck so extended and he's not turning blue with every time we move him. A few hours after the trach was in place I saw all those 3 things happen, and I was so encouraged. So as of right now the doctors are happy and we are just waiting a while to make sure this trach continues to do well for Deklyn. Deklyn's also began teething, which is awesome because alot of HPP babies don't get their teeth or they fall out early. But Deklyn has been fighting fevers and other things because of it. I know these things are normal for any baby but its pretty frustrating when your trying to get your baby on to bigger and better things and the thing holding you back is teeth! And being in the hospital, when someone has a fever and is irritable your first guess isn't teething, you right aways think something more serious is going on. Sometimes its just the simplest thing bugging him.

They've tried Deklyn on a new type of ventilator, the kind of ventilator he would be going home on. It didn't go smoothly the first try but they are going to be trying again soon. I'm so excited because for so long I've felt like going home is so far away, but talking about putting him on this vent means its sooner than we think! Also late this week or next we are supposed to be moving to another part of the hospital, again its bitter sweet. I know its a necessary move, and one more step closer to home but just like in NICU I've gotten so comfortable here in PICU and I will miss the staff here so much!

I'm also really nervous that we are getting closer to going home, of course I want to go home but Deklyn isn't your average baby. It feels nice to have the security that if something goes wrong a nurse is just a few steps away. We are still a ways off from home yet though. In the mean time were going to get to do new and exciting things with Deklyn when he is finally on the portable vent like take him for walks and as he gets more stable possibly take him out on day passes!

 I started reading a really great book that would be interesting anyways, but I'm sure it has even more meaning for anyone who has a child in Intensive Care. Its called "The boy who came back from heaven", its a true story about a father and son who were in a terrible accident and the son should have been killed but miraculously survived. There are lots of parts I love about the book, but the main part for me is that I can relate with so many things in the book. I think a hard part for me in the last 6 1/2 months has been feeling like no one understands. I know people try, and they imagine how hard it must be but no one really knows. I smile and laugh it off, and speak positively (for the most part) because thats how I was raised and I believe it helps, I don't really let people see the side of me that is having the hardest time of my life. Reading this book has really shown me, some of things I feel and think are totally acceptable for what I'm going through. 

This book also reminded me to keep believing, there are some things I believed in the beginning for Deklyn that I kind of let fall to the sides. I was believing that Deklyn would totally be off the vent before we took him home and when we decided to get him trached I kinda stopped believing that would happen. I'd like to ask those of you praying for Deklyn to believe with us for this. Were still going to be prepared if he does come home needing to be ventilated, we'll know how to take care of him but I see no reason why we can't believe for the very best like we did from the very day I was told something was seriously wrong with my baby.

 Thank you for continuing to believe with us, I tell Deklyn everyday that he has no idea how many people love him and are praying him. We are so thankful for everyone one of you and we know you each have played a part in Deklyns journey so far. I'd also like to ask for prayer for myself and Sheridan, we need prayer for wisdom to know what is best for Deklyn, confidance in all the things we are learning to do for Deklyn, peace & courage. Were starting to see a glimpse of a light at the end of the tunnel, I know its quite a ways yet, but even its only 3 more months I'd be happy!