This weekend he has developed what looks like panic attacks where his entire body startles and flails. This has been very difficult to watch him go through. We are holding him ALOT and working to keep him calm to prevent any dry heaving. When his stomach is full of food or gas he can not burp or spit up so he dry heaves. Unexpected/Untended to dry heaving can create a whole other issue, such as ripping out his surgery. To reduce the dry heaving possibilities we lowered the food he gets per hour and he is now on his food continuously for 20 hours a day instead of 17. Overall, it's very concerning and scary. We are always on alert. We feel helpless at times and it's a horrible feeling.
Another factor that complicates things right now is figuring out which doctor to go to for what. While in the hospital we were seen by several different departments. All of these departments have specialties, obviously, and all have follow-up appointments. We have Neurology this week and ENT next week. Until then Micah is not really set up in these offices outside of our hospital stay. So the challenge is who to go to for what. I can go to my primary pediatrician but he probably does not have all the info he needs to fully help him. The people who can help him still need to see him for the follow up appointments before they can do much. I'm praying to get into these doctors early this week.
-That I find the right doctor who can do something Monday.
-For an ENT appointment to be scheduled this week.
-For our Neurology appointment on Tuesday at 10:30 am.
-For his GI track to regulate.
-For us to find a food he will tolerate.
-For an agency or insurance to pay for the food he tolerates.
-For his meds to be effective and appropriate for his situation.
-For me to not just "get through" Randy's work week, Monday-Thursday, and instead have a great week.
-For rest and peace for all of us.
-For all the other stuff we are praying about....too much to list.
Thanks so much!
-Working with GI over the phone and making progress.
-ENT appointments at 11am today.
-Surgery follow-up next Tuesday.