Well, we are still here.
I spoke with the Resident, and expressed by "concern" that their thought that Jacob was "experiencing the sensations differently than we do", and had a "hypersensitive" GI tract, was a crock, and we had not really looked for the problem. They have scoped him 3 times in 6 months, each time showing esophagitis and gastritis, and visually diagnosed gastroparesis. I have told them he refluxes, so he has a GERD diagnosis, treated with 4 different acid reflux meds, none of which have worked. Last night, he punched himself over and over, and over in his sleep. This is NOT a "behavior". I know he has some behavior challenges. I have scars all up and down my arms to show his behavior challenges. But, this child is IN PAIN, and we have not done anything to alleviate it. Any one of us with esophagitis and gastritis for 6+ months would be complaining and we don't have hypersensitivity. I told her we either figured something out, or we wanted to be referred for a 2nd opinion somewhere else.
Then, they did their rounds, and I repeated my "concerns" to the entire resident group and the attending. I told them we could at least address the GERD. And, what can be done for the gastroparesis? Turns out there are other things that can be done! Imagine that!
So, they changed his Nexium to Protonix, and added something like Reglan that is not Reglan, to increase gastric motility. They said they would discuss his case in the team meeting at noon, and possibly rescope him. They would let me know.
The nurse this evening said they are planning on an MRI tomorrow. I don't know of what, what they are looking for, but they will discuss this with me on rounds.
At least they are beginning to look.
I hope we get to the bottom of this and we get to go home.
And, we are expecting 5 inches of snow tonight.
Unfortunately, I have no news on the adoption front! I will be posting that AS SOON AS possible!
Mary
Hi! I am so happy to have found out the family that is adopting sweet Jacob! We were prayer warriors for him and he was our Angel Tree angel in the very beginning. He just looks so precious and so in need of love- I can't wait to see him join your family! Praying that all goes well and smoothly for you!
ReplyDeleteOh Mary, I hear your frustration in each post. What in the world do you think it is? Would a G-tube help? I sure am loving Zoya's new one!
ReplyDeleteNo, unless they determine that he should not eat. He is eating well, just cries and hurts all of the time. He is gaining weight. Has gained almost 25 lbs in 1 year home! We got him at 30 lbs last December, and he is almost 55 lbs right now. That is nearly doubling his weight in a year! He is a chunk! There is something causing pain. They will be here any minute to pick him up for surgery...the scope.
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