For the last few weeks since raising the dose of Reglan (a med to promote intestinal motility) Levi has had only a couple very small vomiting episodes. He's still only been receiving half of his daily calories, we just can't get that much volume into him. We gave up continuous overnight feeds because he kept throwing up in the early morning hours, and switched to plain water to keep him hydrated. He tolerated that very well.
He's been getting three bolus feeds throughout the day at 180-190 ml. Yesterday I increased to 200 ml per feed. About an hour after the first two feeds, Levi sneezed, which caused him to throw up. Later in the evening it escalated until he couldn't keep anything down, even water or a dose of Zofran (nausea med). Mom stayed with him overnight so I could get some sleep. He kept jumping in pain and gagging/vomiting all night. He has had "coffee grounds" vomit before, but this morning it was all brown with clusters of "coffee grounds", definitely worse than before, so we took him to the ER. All the normal tests were run, and he was admitted. As usual, everything came back normal.
All day he has continued jerking in pain and being extremely nauseas. He threw up in the ER, also dark brown, but mixed with fresh blood. So far no one knows where the blood is coming from. The doctors are theorizing that it could be coming from the lungs and will speak with the pulmonologist about performing a bronchoscope to check the lungs and throat. Pulmicort really didn't help his breathing issues much, and our doctor told us this would be the next step.
We had a care conference today with the dietitian, neurologist, and gastroenterologist. We will change his ketogenic formula and see if he tolerates that better. We discussed adding a fourth bolus feed, which didn't go well last time I tried, and may need to be given late at night. I spoke again about how all the GI issues seem to directly correlate to the G-tube surgery last year. Our neurologist said that sometimes surgery can lower the threshold for pain, and it's possible that Levi perceives pain where most of us would not. The GI doctor agreed that many of his patients with chronic GI issues complain of pain that doesn't necessarily stem from a disease. If this is the case that may explain to them why Neurontin has been so helpful when they didn't think it would be. Maybe in the future we will try Lyrica. This scenario seems to fit, and made a lot of sense to me. It was great to get together in the same room and brainstorm!
Now it is evening, right about Levi's normal bedtime, and I've just put him in a feeder seat like the one he has at home. Even after Reglan and Zofran, his stomach is still extremely upset. He's so exhausted he can hardly keep his eyes open, but the minute he falls asleep he's waking up sick. He's only had snatches of sleep for over 24 hours now. We're really concerned! It's the same type of issue we've been dealing with for the last year, and yet it's different at the same time, and definitely worse. Please keep Levi in your thoughts and prayers, and share with your friends. This little guy needs another healing miracle! He's fought through so many obstacles, it's time for him to put this behind him and see all the joy that life can offer. I can think of so many things that used to seem important: walking, talking, running, crawling, eating by mouth, etc. I see now that none of that really matters. If he could just be done with these medical problems, if he could just feel good and be happy, that's all that really matters.
Here's a video from last weekend, swinging in his new swing.
http://www.youtube.com/watch?v=mXVbpBe1LKk
He's been getting three bolus feeds throughout the day at 180-190 ml. Yesterday I increased to 200 ml per feed. About an hour after the first two feeds, Levi sneezed, which caused him to throw up. Later in the evening it escalated until he couldn't keep anything down, even water or a dose of Zofran (nausea med). Mom stayed with him overnight so I could get some sleep. He kept jumping in pain and gagging/vomiting all night. He has had "coffee grounds" vomit before, but this morning it was all brown with clusters of "coffee grounds", definitely worse than before, so we took him to the ER. All the normal tests were run, and he was admitted. As usual, everything came back normal.
All day he has continued jerking in pain and being extremely nauseas. He threw up in the ER, also dark brown, but mixed with fresh blood. So far no one knows where the blood is coming from. The doctors are theorizing that it could be coming from the lungs and will speak with the pulmonologist about performing a bronchoscope to check the lungs and throat. Pulmicort really didn't help his breathing issues much, and our doctor told us this would be the next step.
We had a care conference today with the dietitian, neurologist, and gastroenterologist. We will change his ketogenic formula and see if he tolerates that better. We discussed adding a fourth bolus feed, which didn't go well last time I tried, and may need to be given late at night. I spoke again about how all the GI issues seem to directly correlate to the G-tube surgery last year. Our neurologist said that sometimes surgery can lower the threshold for pain, and it's possible that Levi perceives pain where most of us would not. The GI doctor agreed that many of his patients with chronic GI issues complain of pain that doesn't necessarily stem from a disease. If this is the case that may explain to them why Neurontin has been so helpful when they didn't think it would be. Maybe in the future we will try Lyrica. This scenario seems to fit, and made a lot of sense to me. It was great to get together in the same room and brainstorm!
Now it is evening, right about Levi's normal bedtime, and I've just put him in a feeder seat like the one he has at home. Even after Reglan and Zofran, his stomach is still extremely upset. He's so exhausted he can hardly keep his eyes open, but the minute he falls asleep he's waking up sick. He's only had snatches of sleep for over 24 hours now. We're really concerned! It's the same type of issue we've been dealing with for the last year, and yet it's different at the same time, and definitely worse. Please keep Levi in your thoughts and prayers, and share with your friends. This little guy needs another healing miracle! He's fought through so many obstacles, it's time for him to put this behind him and see all the joy that life can offer. I can think of so many things that used to seem important: walking, talking, running, crawling, eating by mouth, etc. I see now that none of that really matters. If he could just be done with these medical problems, if he could just feel good and be happy, that's all that really matters.
Here's a video from last weekend, swinging in his new swing.
http://www.youtube.com/watch?v=mXVbpBe1LKk
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