Special Needs
DS is being admitted to the hospital on Tuesday
We went to the GI today and he gained .3 ounces since his last weight gain which was two weeks ago. We have been trying to up his formula intake, but he's stubborn and won't go above 18-20 ounces or if he does he starts puking it up after. His GI decided today that tomorrow night we're to stop all of his medicines and he'll be admitted to MGH on Tuesday for an endoscopy, ph probe, they'll check for malabsorption issues and he'll be evaluated by the feeding team. We were told to expect to be in there for about 48 hours. I'm a nervous wreck because he's going to be put under general anesthesia for the endoscopy and the ph probe needs to stay in place for 23 hours and I know he's going to try and pull at it since he grabs at everything. I have a feeling the next five days are going to drag.
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Re: DS is being admitted to the hospital on Tuesday
Oh wow - I've been thinking about you. Hopefully between the procedure, pH probe and the feeding team you'll get some good answers soon. Keep us posted.
You know what's amazing...I've been praying that we would be able to do what you are going to go through so we can get some more answers! IT sounds like our ds's have some fairly similar problems.
Due to severe bacterial infections, we are not able to do any of these tests on ds for about 6 months. He needs to heal up some, and then we will do tests to see what more is going on. At least with the Neocate Jr we have him stabalized, gaining weight, sleeping... but we are starting to back slide again.
Like you posted before, my son also has no immune system. His body is fighting so hard all of the time just to digest and absorb food, that any other bacteria coming in knocks him down for at least 2 weeks (double ear infections all the time!).
I'm sorry you are going to be going through all of this, but I pray it will be worth it in the end! I'll be praying for you and your family this week. Please post and keep us up to date with his prognosis!
Erica
I hope everything turns out good! Good luck !