It seems like we have all been sick, passing it back and forth for the past few weeks. I'm not sure who started it, but we have all had a cold, sore throat, sinus infection, ect. Some of us have had it twice! This week was Noah's turn and he started Monday with diarrhea and a runny nose. It has now progressed into his chest with a cough and continued cold symptoms. I called his pulmonologist and they have us giving him breathing treatments every 4 hours followed by 15 minutes of chest percussions to break up whatever is settling into his lungs. He has not had a fever which is good and other than the occasional cranky, "hold me hold me" phase, he is in pretty decent mood. His Dr expressed his concern again about Noah being denied Synagis for RSV and reminded us to be ultra cautious and mindful of winter quarantine. Right now it seems like there are more germs circulating INSIDE our house rather than OUTSIDE!
Well after a month of experimenting with the g-tube feeds we have gotten nowhere. We were hoping to start building a hunger cycle and instead Noah's oral feeding has regressed significantly. We tried weaning the continuous at night and he lost weight like crazy. He continues to be uncomfortable at night and retches during many of his boluses. The clinic nurses called this week to check up on him and we had to report no progress and no weight gain. So after talking with the surgeon again it looks like they are going to put the g-j back in. Not sure if you remember, but we had to take it out and put the button back in because the tube stopped working altogether, both the g and the J. We were hoping this would work and we wouldn't have to have another placed, but we all think it is best. He ate so much better when the feeds ran into his intestines and overall, he was a much happier boy. The procedure is planned for next Wednesday. He will have to go to the OR under general anesthesia but should go home after the tube is placed. If he is still having respiratory issues through the weekend we many have to postpone until he is up to par.
Aside from these issues all is going well and I can't believe Noah will be 18 mos old soon! Time really does fly! Zane has been the healthiest out of all of us these past few weeks and doing great. We just finished his new "camo" room and it looks great! I will post a picture once we get his curtains done. He is so busy with basketball and cubscouts but having a great time in both activites. He came home today from school and wanted to go outside and build a trap. Silly me, I asked what he was intending on catching here in the great state of Indiana. "A turkey for Thanksgiving, duh". I should have known. He even had blue prints drawn up. He dressed head to toe in camoflaugh and went outside with some rope, a rock and few other random objects. One to many episodes of Survivor Man for this boy. I will keep you posted on that one!
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3 comments:
Carrie, I'm so sorry Noah has to go back to the OR. Many prayers for you all and I'll keep you in my thoughts. I hope he starts being hunger and you can make progress.
Fer
CHERUBS Mexican Rep.
I am amazed at how much Zane and Bryce think alike! The turkey trap sounds like something Bryce would do, especially the blueprints! Sorry to hear that Noah is going back to the g-j. We'll be praying that he behaves and you can be home the same day!
The Douglas Family
I hope that you all feel better soon! Hopefully Noah is feeling up to getting his g-j this week.
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