Noelle's Pulmonologist/GI Visits

This week has been a little hectic with doctors appointments and testing. The pulmonologist visit went great on Tuesday. Her lungs are growing right along with the rest of her body and seem to be improving little by little. From a respiratory standpoint...Noelle is very stable. YAY!!! This is a first... :)

From a GI standpoint...we have a long way to come. Noelle had her first visit with the GI doc and it was interesting. There is some talk that she potentially has a tear in her nissen (the nissen was a surgery done to eliminate her refluxing her formula back into her lungs or aspirating). This could be the reason that her lungs are taking sooo long to get better. She could be having some micro aspirations not bad enough to cause serious respiratory distress...but bad enough to cause the coughing/gagging/retching episodes that she has. He also threw out that she may have herniated the nissen site. I don't really know what this means yet...but will get more information on that if it becomes a reality. The other option is her gut motility being too slow (meaning her stomach empties slower than normal). The GI doc threw lots of senarios out there for her today...however, no answers will come without testing. Tomorrow, I'll have to set up an Upper GI test for her for sometime before Christmas. This will basically put contrast dye in through her gtube and xray her stomach to see if anything comes back up. This test will see if her nissen is still working properly. If the test comes back normal...she'll go on to the next test. Potential tests during the next few weeks include: Upper GI, Motility tesing,Endoscopy (she would have to be sedated for this one) and another test that I could not begin to spell. If her nissen has started to tear...then we have some decisions to make. Do we let them operate and fix it? He also brought up the possibility of getting a G-J Tube. This is a tube that would go into her intestine below her stomach...so essentially food would skip her stomach and go straight into her intestines.

The bottom line is that we were correct in assuming that the choking/coughing/gagging/ retching episodes were bad. They are really painful for her and uncomfortable. The doc says the sooner we figure out the problem...the quicker we can get her comfortable. So, thats the latest Noelle news. It's a lot to take in and hopefully will require minimal testing to figure out the problem.

Today, Noelle had her first stuffy nose!! Hopefully, it's just a cold and will pass quickly. The good news is she doesn't have a fever and doesn't really seem to be bothered by it. It took her a few hours to figure out how to breathe out of her mouth...but overall she's still doing fine. If all goes well...she should be completely weaned off steroids next week for Christmas. She has been on continuous steroids for over a year now...I'm crossing my fingers that Christmas Day will be her last dose for quite some time!! :) :) We are most thankful for spending our first Christmas AT HOME as a family!!! YAY!!! It's a huge deal!!

On a great note, I've already signed up for the March for Babies in April!! I'm super excited about putting together the Go Noelle Go Team for 2010!! Please email me if you are interested in joining the team!! :) :)

Hope everyone is ready for the holidays!!

xoxo,


Stacie :)