So now here we are at Nathan being 9 & 1/2. He is still struggling with his nutritional intake, needs and has a g-tube feeding every night. His bowel troubles are worse now than they were back then (and back then it was constant explosive diarrhea) and now he is constantly having constipation & blockages (or diarrhea) that is do to his DIOS, however it's gotten worse. How he feels daily directly effects his appetite and if he will eat or not, how much etc.
Nathan also has gastro-paresis, but he has been off his meds for it for over 2 yrs, but I think he is still having flairs which is part of the motility problems he has now. He doesn't "fit" in to most of the generalized med combo's, and thankfully he's stopped throwing up like he did for so many years~ but then it makes it harder for the doctors to directly connect his triggers/troubles and see where to help him best. They are supposed to be sending him to the Motility Clinic in LA soon, but we don't know when.
So many times I feel incredibly overwhelmed with all the things Nathan has been though, still has to endure and go through. Tomorrow he is supposed to have his g-tube changed & his endoscope & ph-probe. The new GI didn't seem to understand really anything at all about Nathan's Eosinophilic Esophagitis~ or how that works for him, his triggers etc/ how his is auto immune and goes between the food & environmental ~even sensory triggers. I am feeling more and more like we will need to take him to a specialist.
Just seems / is never ending and I know we still have things a million times better than so many people do. So I don't want to feel or be ungrateful for any blessings/progress etc. I just wish more people understood CF, the complexity of it especially w/ other medical conditions/and problems are present. I feel more and more like the mom's, dads and caregivers of these kids~rather cf or just medically complex~/tubes etc know their kids a million times better than the doctors. It's just scary. I know God has His hand over us...it's just still hard. Lonely and I feel like our 'internet world/support' in so many ways is this lifeline since we are constantly at home more than anywhere else. So many people don't understand that...or they simply say "don't be a bubble mom/parent" as if this is some how all by choice. Well I guess it is, but what is the alternative? We let him do things when he's doing well. When he's not~ honestly the activities are just not as important as his health. So we take things a day at a time.