Micah's feeding and medication issues

This last few weeks have been a bit of a challenge with Micah's feeding and medications. One factor has been that the meds that were set up when we left the hospital expired before we saw the doctors who would manage them. We thought that a couple of the meds were dropping off only to learn the hard way that he definitely needs them and will need them for some time. We have seen alot of dry heaving and irregular GI symptoms. At our GI appointment the meds were fixed and they also wanted to add one med and change his food to be higher calorie and to something more appropriate for his age. This has been a nightmare challenge. Basically I am going to be calling the GI department first thing in the morning to talk through the last few days and make some changes. Something has to change. No baby should suffer the way Micah is at this time. As I was/am typing this he woke up screaming in pain.

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.

Please pray:
-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!



Update:
-Working with GI over the phone and making progress.
-ENT appointments at 11am today.
-Surgery follow-up next Tuesday.
-Neurology tomorrow.