Jacob is sleeping. I never thought I would feel so relieved. This has been a roller coaster ride. We got the message mid-day that the seizures we saw yesterday in fact were no seizures. This is great news, but now what? We then got the message that he most likely has Sandifer's syndrome. This is caused by reflux but looks exactly like seizures. Everyone was focused on that, and we now waited for the pH probe to tell us the same. We were told that we could go home tomorrow, and that we would do the reflux and medical port surgery in the coming week.
The spells started again around 1 pm, and came every 15 minutes. They are scary, since Jacob arches back, rolls his eyes and you can not get in contact with him. As the day went by, they became more frequent. Again, we were told they were caused by reflux, and nothing to worry about. Medication and surgery long-term would take care of them.
Around dinner time, we found out from the pH probe that none of his spells are reflux. At the same time, the frequency of them had increased to every 2-3 minutes. He was basically in and out of them the whole time. AND - we had no idea what triggered them and what to do about them. The talk about us going home was gone. At the same time, Jacob started vomiting. The problem was that he got spells in the middle of him vomiting, which prohibited him from even being able to vomit...
You think things can not get worse...and then Jacob decides to not come out of the spell for 3 hours (!). The doctors are still concerned how they would like to treat it, since they don't know what it is. I am pushing for seizure meds, since he does have a seizure disorder and this definitely looks like seizures and we all know that seizurse over 5 minutes can have damaging effect. Now the theory was that Jacob had had a reaction to his seizure medications, and we could reverse that with Benedryl. Again, this didn't help.
We had removed his IV line around dinner time, since Jacob was going home tomorrow, but now we needed one again due to the spells and his vomiting. Thank god we got 2 very skilled nurses that got the IV line in on the second attempt.
I was still pushing for the valium as Jacob was seizing hour in and hour out. Heart rate was also consistently dipping. In the end, I got to see the night attendant who finally agreed to give him valium. I also strongly suggested putting him back on the EEG, since this is very different from what we have seen earlier this week. Again, neurology doesn't want it, the team on the floor wants it - but noone wants to make a decision. I know I am going to have to fight for that in the morning again. It's not going to help that it's Saturday.
The 2 nurses who got the IV line in just popped in to check on Jacob. They were happy to see him finally rest. They just told me before they left: "keep fighting for your baby".
So, I know this is for you all to read and see how Jacob is doing, but tonight it's for me to just even think through in my head everything that went on today. I am hoping that it will give me some piece of mind before the spells might start again and arguing with neurology tomorrow again...
Please send Jacob positive thoughts his way. The most important thing to hpe for is that the long spell didn't make any permanent damage tonight.
Good night, Maria.