A trip to the ER

Nicolas gave us quite a scare on Saturday night. It started as one of his usual scary fits that I have been talking about and progressed into a fit that wouldn't stop, and Nicholas going way to long without being able to move any air. We wrapped him up in blankets and rushed to the ER. It is the worst feeling in the world seeing your baby gasp for air and not be able to breathe. His eyes bulged and look frightened, he turned a grayish color, and was sweating profusely. By the time we reached the ER he was able to breathe again but was still retracting super hard and really working to breathe. The Doctors looked at him but couldn't really do anything for him. Our ER doesn't seem prepared for our tiny little patient. They were unable to get an accurate pulse ox on him the entire time. We didn't bring feeding supplies and had to rig something up to be able to feed him through his ng tube. It is obvious that we need to be closer to a children's hospital but Nick has been unable to find work in the areas we have looked. He took Monday and Tuesday off of work to help me with Nicolas in case of another episode. Unfortunately he had to go back to work this morning :( and of course.. you guessed it.. another episode. Thank God it didn't get as bad as the one that landed us in the ER, but it wasn't fun. The one today seemed to be related to him pooping his diaper. He isn't constipated but he has trouble actually pushing his poops out. The doctor said it has to do with lung capacity and not being able to push or something like that. He takes miralax daily to help him with that.

There is a great group of people I have met online who have children with CD like Nicolas. There are survivors, which gives us hope. It is really nice to be able to chat with them about medical issues and all of the challenges that go along with the diagnosis.

Our other children are doing well. Their Thanksgiving break starts today so they are happy to not have school for 5 days. Oliver is super excited for Thanksgiving, he loves holidays. He keeps saying " Thanksgiving is tomorrow right" lol...

I better go back to sleep while baby Nicolas is sleeping as I haven't slept much at all lately and am feeling run down. Oh and our church did the nicest thing for us, I will write about it tomorrow...