With all the craziness in my life I enjoy the good news as it sometimes does not last long.
After the swallow study confirmed Sophie is aspirating we had to return to the Pulmonologist for his recommendation on how to handle this new challenge. I was so paranoid as we have been shrugging off the subject of the “G-tube” for quite some time now. The day prior to this visit I took her in to see her ENT for her routine three-month checkup, he was very pleased with her progress. He has been following her since birth so he is a big part of our medical support team, I confirmed with him that Sophie does not have Laryngomalacia, yayy!! He was pleased to be able to see her ear drum for the first time since her birth without having to be in an operating room, this is thanks to her sinus & adenoids surgery. She has not had as many severe infections since her surgery in February especially since we switched to in home therapy. He also stated how “awake” Sophie was, I interpreted it as how nicely she is developing cognitively. He thought it would be good to try to avoid the g-tube if possible so I was a happy girl to finally walk out of a doctor’s office with good news.
At the Pulmonologist I waited for over an hour but it felt longer because I was nervous. To my surprise her doctor did not recommend the g-tube, he stated that she has not been hospitalized for any respiratory infections and the fact that she is only aspirating thin liquids occasionally is a good reason to try to avoid the tube. I explained to him that her GI will want to push the g-tube when we see him again but he did not recommend it at this point. He stated that he was very pleased at Sophie’s rate of development. And that she is able to clear her airway very quickly which is a benefit not many children with muscle tone issues have. Our plan is to control drinking with positioning and her Pulmicort (steroid via nebulizer) religiously to keep her lungs clear and functioning nicely. So far so good!
Since Sophie’s birth I don’t usually get a lot of good news at the doctors visits….I dread them most of the time! But after this I feel good, I still have to face the GI though I am not looking forward to that. Her pediatrician wanted the Pulmonologist to decide in the matter to insure her lungs were not in severe danger, she was happy about not needing the tube at this point. We have avoided the g-tube but that does not mean we are in the clear. As I have learned in my journey with this beautifully special child things can change in a split second so I keep an open mind to all possibilities. In the end I just want my daughter healthy, I’m not ready for God to take her home yet!
So… I’m savoring the good news because for us this is BIG!!