Let's just look at some pictures from the weekend before I type anything...
My handsome men.
Jaxon and Daddy watching basketball.
(Brady left, Jaxon right)
Great Grandma Carol with the boys.
Brady wants everyone to see his booty.
(Yes, he's wearing his bib as a cape, and only a diaper...why not...)
Jaxon has a pretty bad runny nose which is making sleeping impossible. I had his oxygen on him overnight and he ripped it off so hard, the tape left an owey on his cheek. He's been up every 20 minutes after 2/3am for the past 2 nights. We're exhausted. Jason left this morning for a business trip through Wednesday night. I'm hoping Jaxon's cold doesn't get any worse while he's gone. Nana and Papa Letts are here to help tonight and then Rachel the rest of the days. I have our home-nurse stopping by to just do a quick listen to Jaxon's chest since he has the congestion. I just can't be too safe with him.
So Jax has his 2nd chiropractor appointment this afternoon...I'm really hoping it will help him sleep better again tonight...we could all use some sleep.
Also, we were able to get insurance to approve Brady's April RSV shot, so we're coordinating all of that. Major big thanks to Nurse Peggy from our ped's office for working so hard to get that. She's said they're waiting for the county report if there will be a MAY RSV shot. She said some years there is and some not...depends on how many cases there are reported in the past month to determine if it's still a threat. So we'll see if this is the last of it or not.
Thank you for all the support and well wishes for Jax. I'm still researching everything I can to see if something else clicks. I'm obviously not accepting that either of the upcoming tests are what's wrong with him (I die inside thinking of them).
I keep thinking back to Friday's appointment and replay everything the doctors were saying or did. I realized that the awkward moments of silence with our primary specialist (who ordered the MRI) was observing Jax, and then made the decision for the MRI. I like to think that this doctor is still holding onto hope that this really is just a bad case of reflux that is lasting longer and is more severe than any patient he's seen. I hate the fact that the other specialist is quite certain Jax has some life-long disease. I just can't accept that yet. Wouldn't a disease involving the intestines have SOME symptoms in the stool?? Jaxon has never had issues with that - it's always been upper GI. I hate the fact that we were offered to have a social worker out to the house to help us cope with all this. Don't seal our fate yet.
Does anyone out there have any other suggestions? The two suggestions that I brought with me (EE and the allergies) were both acknowledged as possibilities, but it turns out that the way you treat both of those conditions is with Neocate...which is the formula Jax has been on for months.
It's odd. This whole time they've been saying "reflux", a part of me thought they weren't right. Now they're saying it may NOT be reflux, and in fact testing for other things. And I hate it...I want to go back to them patting me on the shoulder and insuring me "he'll grow out of it".