New Tube!!

For those of you who have been faithfully reading my blog, you will be happy to hear on Friday Deklyn finally got a new ventilator tube! They got an IV on him Thursday morning which would be the main thing he needed for a tube change. They wanted to do a scope of Deklyns throat to see how it is structurally, so they called Ear Nose & Throat (ENT) to come and it shouldn't have surprised me, but the tube change went from happening in the next hour or so, to the next day. We prayed for his IV to stick until then and it did! 

Amazingly the tube change did happen the next day. The doctor explained the risks to me, which were pretty scary risks, but I knew this change would go well and be the best thing for him. It really didn't take very long and we were told it had gone extremely well, better than anyone could have hoped that it would! His throat looks great, has a bit of irritation spots but that is to be expected after being ventilated that way for so long! Some of you may be wonder if his new tube is in his nose, cause we were told that would be a great option for him. After lots of discussion it was decided having the tube be in his mouth again would be better for him in the long run then the damage it might do if it was in his nose.

So now that we are over that hurdle, we are now facing some new issues. We are not totally sure what is going on, but Deklyn has been working very hard to breath. We want him to try but at the same time he is working himself so hard he is getting very irritable. He has had a very bad fever today (which has come down) and he has been having the same spot in his lung collapsing. Many different things could be going on, he may have an infection, his fever could be related to the collapse, we not sure exactly how he feels growing bones so the fever and irritability could be related to that. There are just so many things to consider but it is just so hard watching your child so upset, you can tell something is hurting him and you can't do anything to help him. 

Those of you praying for us, I would really appreciate prayer that either whatever is bothering him will be gone, or the nurses and doctors can figure out what is bugging him and fix it. 

On a happy note, Deklyn is growing! They still look funny, but his arms are not so tight and close to his body. They have much more mobility and and slowly getting longer! It is just so encouraging to see!

Thank you to everyone for your support, I feel like Deklyn has so many people that love him, are praying for him and cheering him on in this journey. It is really hard some days, especially days like today when you just want this whole experience to be over and take your baby home. We can feel your prayers and love. Thank you!