Eventful, stressful, and precious....

Basically more waiting, which I am a pro at doing now. ;) Few Physicians are not in agreement with the trach deal ( whether to go straight to trach, or give another chance extubating ) sooo hopefully tomorrow we will know a definate answer. FOR NOW there is an opening in the OR on Friday for surgery if he is trached. ( they will also do the gtube then )** Little update for those wondering why the trach. Camden has severe broncheal malaysia, so when he is extubated his airways tighten and he can't breathe. But his is right lung is doing well with the help of cpap pressure. He can't go on cpap alone because when they take the tube out, which is kind of acting as a straw, he destats. They figured this out last time when they tried extubating him and no sound came out while he was crying, therefore realizing it was problems with the airways. So, as scary as a trach sounds, there are many positives with it. I could work with him on breast feeding, he may have less oral aversion the sooner he is extubated ,I could pick him up to comfort him, he would start growing stronger which could help him grow out of the airway problem. Also that tube down his throat can cause the malaysia too. So, even while knowing all this, and seeing we are heading towards a trach, as his momma is still praying for the Lord to open those airways! :) He is just so close so it is so difficult to watch him have to go through all this.
Still not keeping all his food down. Reflux is normal for cdh kids, but they are still wondering if the tube is not helping with the gagging issues too...hard to say.
Camden had one bad fit today where he started to drop his stats, and needed a bit of vent assistant for about 30 seconds....not too bad for him. ( maybe worse for me! ) He recovered well. So there he was all wore out from trying to breathe and being mad as a hornet, he takes a cat nap then wakes up, smiles and coos ( silently, of course ) for about 5 minutes straight.....that was the precious part.....









This picture is from today....still a happy baby through it all!!

Peanut went in to see him last week and told him, " You are going to be so happy when you see real life...this is not what life is like...it is sooo much better!"