So, I guess they took me serious on Friday night. At 8 am on Saturday morning I had the attendant from neurology and the attendant on the floor in Jacob's room. The spells had started again, and we actually got an answer to what they are.
Jacob has developed an imbalance of his inner ear. This leads to dizziness, and in Jacob so bad that he actually looses control of his whole body and his eyes are rolling back. He is breathing fine, and they do come with movements. It is most like the vestibule-cochlear nerve which connects the inner ear to the brain that is impacted. You treat this with medication, and for some this will completely go away. For some, this is something you have to live with. Both hearing and vision loss can come with it as well, so we have to keep an eye on that in the future.
It is a huge relief to know what it is, and it does make sense that they are not seizures. I can trigger them with movements, which you can't do with seizures. We also are now able to medicate it right rather than pumping in more seizure meds in Jacob. We'll still might have to give him valium at times as he has spells lasting for hours as we had on Friday night. He has still spells, but we seem to have started to figure out how we can avoid some of them, and also have to make Jacob less dizzy. Skin contact seems to be the key.
We also seem to have a plan to leave the hospital now. The doctors feel that we have a cure for his spells, and he is also going to be followed by the movement specialist at Children's with start next week for long-term care.
Tomorrow morning we will have another GI study that will show how Jacob passes his stool. This is a daily struggle for Jacob, and the thinking is that if he will have surgery to fix his reflux, we might as well also fix that. After the study, we will consult with Jacob's GI surgeon. If he needs GI surgery, we will be discharged tomorrow and come back for the surgery as soon as there is an opening. At that time, Jacob will also get his medical port.
If he doesn't need GI surgery, they will put him on the surgery schedule on Tuesday for his medical port.
So, we don't know yet when we will be discharged, but at least there is a plan. I feel so much better about that.
Jacob is sleeping right now, but is giving us more smiles and is doing great as long as we don't move him too much. Sarah and Joakim have an afternoon off from the hospital. Sarah had a play date this morning, and now off to Swedish school. I had the morning off, and got all Christmas decorations down! You do start appreciating the small things in life.
Thanks again for all calls, visits, e-mails, and updates in the guest book! It's great for Jacob and the rest of us to have all that support.