Well, the past 3 weeks Hunter has started sounding watery and gasping and reswallowing pretty much all day long. We thought he was aspirtating (spelling, sorry) so we took him to the HORRIBLE GI doc (we have an appt. for a second opinion but not until May 26) and he admitted us to the hospital to do an NG tube. It seemed to help a little with the watery sound.
The pulmonary doc came to see him and determined that he is not aspirating and his lungs are ok. The problem seems to be the reflux and his Infantile Spasms together. He is very uncoordinated when he eats, gasping and gulping and reswallowing, which explains the wateryness. He literaly looks stressed and uncomfortable whenever he eats, before and after. They did a swallow test but it didnt work because he wasn’t that hungry and wasn’t about to eat the barium.
I was about to scream and/or cry all day today. It seems like no one cares and didn’t want to help us because Hunter isn’t “critical”. I finally lost it and asked for a social worker and she came and started the ball rolling finally. We are scheduled to check back into the hospital on Monday and they are going to FINALLY do a PH probe on him and then another swallow test on Tuesday. 6 hospital visits in just under 4 months.
After we get the results I guess we will go from there. He currently is hooked up to the NG tube. My guess is we will either proceed with surgery, an NJ tube, or just resume our “normal” schedule. I hate how he is 9 months old today and no closer to any relief or answers. I cry to him every day that I want him to feel good and I will do anything to get him to feel good. Hopefully my prayers will be answered.
His spasms have not stopped yet either. The meds do not seem to be working. We have an appointment on Wed. with the neurologist and I think we will either give one more med a try or try the Ketogenic diet (mimics starvation, supposed to stop seizures). I dont know how this will play out if he has a feeding tube. They said they make a Keto diet formula, so I guess thats how we will have to do it.
Anyways, I am mentally exhausted and I just want to cry all the time. Hunter cannot develop at all until we can get all of this crap under control and he has some relief in his life.
Please pray for Hunter and keep him in your thoughts.
Thanks
Dawniee3112006-4-7 21:47:28
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