Over one hurdle, working on the next....

What a week it has been. Tuesday Nate's tube came out again. I was frustrated knowing that once again we were facing a mess trying to get it back in. In our town there is no such thing as an NJ tube. Nobody has one. We've asked!!! I met Thayne at the hospital hoping we could get there before the radiologist left because there would be no way for us to get it replaced. We spent several hours AGAIN in the emergancy room only to be told that they could put an iv in and keep him till morning and then see if they could replace it. Because... get this, the radiologist did not WANT to come back in. He was on ON CALL but didn't want to go in until morning. Isn't that sweet of him???? (I'm going to let it go or I would blow just thinking about it). The problem was, they didn't know if they could even put it in. So our option was stay and hope, leave and know. We left for Salt Lake. We got there Wednesday morning at 1:30am. The radiologist left at 11pm. OF COURSE!! They needed to put the iv in so he would stay hydrated until we could get it put in. Amazing how they could put the iv in and Nate did not even cry. Nothing, not a tear. Had they tried here it would have been a nightmare.... we know that because we have seen it happen too many times to count. Of course this happens the day BEFORE we had to be there for his FEES test and GI clinic appointment!! But.................

HE PASSED HIS FEES TEST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What does that mean you may ask? (Well... somebody may ask!) It means that his epiglotiss if FINALLY working like it is supposed to. It is finally protecting his airway and we now have the okay to start thickened feedings. That is the first hurdle!!!! We can now start oral feedings every 3 to 4 hours for 5 to 10 minutes so he doesn't get tired out. This is the GREATEST news! The new hurdle is teaching him how to eat. It seems strange, it seems like eating would be a natural thing but nothing has been easy with Nate! :) He now has to learn how to control his tongue, how to move the food and how to coordinate swallowing/breathing. He's like a newborn all over again, maybe even worse. He always had feeding issues and it is worse now that he is older and has had the tube down his throat for close to 3 1/2 months. On top of that, the tube seems to make him more congested. When the tube was out he did not have any issues with swallowing or rattling in his throat. As soon as the tube went back in the saliva started to build up again. The ENT said that it didn't matter, it would cause that. Funny, when the camera went down his throat, it clearly showed that around the cord there was saliva built up. The problem is that we can't take the tube out yet because there is no way he would get the nutrition he needs without it and since he is only 11lbs he can't afford to lose any weight. Next month after his evaluation and more tests we may be able to go to an NG tube and see about letting him do without for a while and eat without the tube. He is a little fighter, tough and amazing and I know that we will overcome this too. He's going to come out on top. The strange thing is, he nursed for just a minute today and he actually does better nursing than taking the bottle.

I am constantly amazed and upset by the medical care we are getting though. Nobody wants to work together to heal the whole child. The ENT doesn't work with the GI clinic, the GI doesn't work with the pediatrition, nobody knows what the other is doing. They told us it wouldn't be a problem to have an NJ tube inserted, but nobody has one in town. We definately have to fight for every babystep we take but this little man is so worth the fight!!!!

Our little trooper will overcome all. He already has!!!