Thursday, November 13, 2008

Crossing things off the List

Brayden was back at the GI doctor today. He still vomits 2-3x a day, mostly saliva and stomach bile. Several times it has been bloody but no blood since last week. We have definitely crossed many things off the list that could explain and help the vomiting problems.

Just to recap:

  • Allergies – tested many times, allergic to nothing
  • Reflux – has reflux but none of the medications seem to be helping much
  • Seizures – sometimes seizures will induce vomit but for the most part seizures are controlled and the vomiting is not
  • Stomach problem – it was found that he has delayed gastric emptying which was resolved by going from G-tube feedings to J-tube feedings also added medication to help his stomach digest the saliva and bile
  • Stomach irritation – he has been scoped, looking for possible ulcers, sores, etc but nothing has been found.
  • Hormonal imbalance – had an ECTH test to look at his pituitary and adrenal glands and the test came back fine
  • ENT – looked for a possible irritation or problem that may have caused the bloody vomit. He was scoped and everything looked great, smooth and looking good.
  • Medications – always adjusting and increasing. Also tried Zofran which should take away the urge to vomit but it has not done much good.

Now we are trying:

  • New formula – was on Peptamen Jr. and will be trying Elecare (which is crazy expensive, approx $500 a month, we are hoping that between insurance and his new Medicaid, it will be covered)
  • Adjusting the meds again – increasing a bit
  • Haircut – ok, not really but I had to slide that in there some how. Haircuts are just as traumatic as some of his procedures. Jeremy gave him a haircut last night. I never like haircuts on any of my boys but Brayden needed it. When it gets too long he gets a bird’s nest in the back from always being on the back. Thank goodness he is not Samson and he still has his strength. It certainly accentuates his yummy cheeks.

We are praying that the new formula and a slight change in the medications will help. Brayden will be trying this out over the next few weeks. Since we have crossed many things off the list, Brayden could possibly be getting another GI scope and exploring the idea of a nissen. The nissen is:
the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal. – webmd Click here for a full description. The nissen requires some hospital time and down the roads has complications. The nissen is not something happening now, the doctor gave it as a possibility.

All of this just could be a neurological problem. Brayden's brain is abnormal in so many ways, the doctors do not know how things play out for him. We may just be waiting for him to out grow the vomiting, waiting to see if his brain can take care of it.

Does anyone, anyone at all, see something that needs to be added to the list? We are always looking for suggestions.


Leah said...

I wish I could help, but I haven't been at this long enough to know. Our guy has some "reflux" like problems that come and go and I guess since he is still so young we aren't sure what we are dealing with yet. But i do want to say that Brayden is adorable with his new haircut and his yummy cheeks are just begging to be smooched now. good luck with the list and i hope that you are able to find a solution soon. and by the way - thanks for the email, i'm sure i will have much to reply with soon... :)

Andrea said...

I don't have any ideas or suggestions, but wanted to say that he looks so cute with his haircut! It makes him look like such a big boy. We can't wait to see you guys in 2 weeks!!

the deKorne family said...

Carrie...he is so handsome! You are such a role model to me-how blessed Brayden is to have you for a mother. You and sweet Brayden are constantly in our prayers.