So for the past few weeks Levi has not been feeling well. For almost two weeks now he's had flu-like symptoms of gagging with and without meals, and vomiting with meals. I thought it was a flu bug, but now not so sure. We went to the ER last Friday. They gave him some fluids but he was only slightly dehydrated, and took many tests, all which came back normal, thank God. They figured he had a virus. Once Tuesday rolled around and he was still sick, not eating or drinking much, no urination or bowel movements, we knew we had to take him in again. We were admitted overnight for hydration, but I've still been concerned that so many new symptoms cropped up at the same time, I wondered if it was not a virus, but some other underlying cause. Thankfully, the neurology team agreed with me, and we are in the midst of running tests. The normal phenobarb level test, which may result in a dose of IV phenobarb, and a test to check his thyroid. They want to rule out seizures as a cause of the new symptoms. I don't really feel like it's seizure related because the seizures have been less frequent and more mild since he's been sick, but you just never know. I love that they are very thorough and look at every possible cause! I've definitely been known to be wrong at times in the past. lol In fact, I allowed IV fluids with a small amount of sugar (which is very restricted on the ketogenic diet) because I was mostly concerned with hydrating him. Now he's been having many more seizures today. I'm thinking that was the wrong decision! The dietitian has let the nurses know which IV fluids he should have, so hopefully that will resolve in time once the fluids are changed. Right now he's sleeping peacefully with Daddy.
We did have the dreaded G-tube discussion. I have spent the last year force feeding this little guy in the attempt to avoid any type of tube feeding. I completely broke down in front of a whole team of doctors and med students this morning when they brought it up, even though I knew at some point it would be discussed. How embarassing! I'm feeling better now, though. Even though it was something I never wanted to happen, I really have to look at the greater good here. 1) Levi would get all the fluids and nutrition he needs every day, 2) We wouldn't have to spend a large part of the day making him eat food he doesn't want. That being said, I'm still praying that this whole thing is due to a nasty virus and once he gets over it and is well hydrated he'll have more of an appetite!
The OT is coming up at 3:00 to watch him eat and evaluate him. It would be nice if it is Molly. She taught him to suck the bottle again after he was in a coma when we were here originally. On the bright side, Levi has been very happy and animated today! We haven't seen him this happy in weeks! I'll try to keep fresh updates as I have information.
We did have the dreaded G-tube discussion. I have spent the last year force feeding this little guy in the attempt to avoid any type of tube feeding. I completely broke down in front of a whole team of doctors and med students this morning when they brought it up, even though I knew at some point it would be discussed. How embarassing! I'm feeling better now, though. Even though it was something I never wanted to happen, I really have to look at the greater good here. 1) Levi would get all the fluids and nutrition he needs every day, 2) We wouldn't have to spend a large part of the day making him eat food he doesn't want. That being said, I'm still praying that this whole thing is due to a nasty virus and once he gets over it and is well hydrated he'll have more of an appetite!
The OT is coming up at 3:00 to watch him eat and evaluate him. It would be nice if it is Molly. She taught him to suck the bottle again after he was in a coma when we were here originally. On the bright side, Levi has been very happy and animated today! We haven't seen him this happy in weeks! I'll try to keep fresh updates as I have information.
Levi and Daddy
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