one day left to live series - 7 months and 20 days

Days of bad timings.

The excited trip to Houston was far more than just excited. We reached Houston at around 1:30 pm CT on the 16th of June and within 2 hours we were in Dr.Lekshmi's clinic for Sripathi's most dreaded vaccination shot, the DTaP. Miss.Ruby, Dr.Lekshmi's nurse gave him the shot and he did not feel a thing, so obviously he did not cry. That's Ms.Ruby's lucky hands, nobody feels the pain of shots. Sripathi did just well that evening and slept well that night. The next morning I gave him is seizure medications as usual and put him down for a nap and I stepped into the shower. Within minutes my I heard him almost scream and I just jumped out of the tub and at the same moment my mom carried and brought Sripathi to the bathroom, I held him and tried to calm him but he went crazy and I noticed he was seizing. So told my mom to call Aravind and he came and carried Sripathi while i tried to dry myself and get the Diastat. It was horrible the way he was screaming, so far he has never made a noise while seizing, this time was totally diferent and his seizure was also getting severe, he was shivering and trembling, probably looked like the tonic clonic seizures i've heard about. I gave him the diastat rectally and unfortunately he pooped. And we were not sure if we can administer another dose. And he didn't stop seizing for well over 10 minutes and he was screaming all the while. And slowly he stopped and fell aleep for over an hour on m lap. My bad: I shouldn't have left his side, should have woken up earlier and had my shower before he woke.




Ok thought that was it for the day, we were all tired and he was overly exhausted from that one seizure. But things were from bad to worst as the day progressed. Later that afternoon when he was sleeping and Aravind was by his side I went to have lunch and as i was half way through i heard the same loud scream and I rushed to find him seizing. So to stop him from shaking and seizing and screaming we gave him another diastat and after a while he stopped and went to sleep, I put him beside me on the bed and we slept for over 2 hours. Then all of a sudden he waked up screaming and seizing. This time around it lasted 4 minutes well 1 minute less than the diastat cut off. So we were hoping, hoping real hard that nothing severe happens during the night. And luckily he had just one 30 second seizure at around 11 and then he slept well.



Today we were getting ready to leave to Texas children's hospital and just minutes before we left he seized for less than 30 seconds. We then reached the hospital in less than 45 minutes and right when we put him on the stroller he seized, again for less than 30 seconds. by the way these were all laughing seizures, yes he kind of giggles when he seizes. Then the EEG lasted for over one and a half hour including all the setting up of electrodes and stuff. During which time he never seized. duh. I though if he did seize during the EEG then neuros could read more about his seizure activity. Anyways 45 minutes after the EEG he did seizure twice and each lasted for probably only 10 seconds. Then we had his bloodwork done for longchain fatty acids and pipecolic acid. oh I forgot to mention, the doctor from the Genetics department mentioned that we can ignore the PHF8 gene duplication for now, because they don't have much information nor research in that area and so they are continuing to do these acid tests probably to check on his inborn metabolic disorders.



After the bloodwork we had a quick lunch as the cafeteria on the 3rd floor right across the laboratry and headed to the 9th floor for the appointment with Dr.W. We were way to early but then again we did not want to drive back and forth. And the doctor was kind enough to see us early. And yes he did seize while we were waiting for the appointment. Phew after all the bad and worst things in succession which took me on a guilt trip, the doctor had something pleasing to say. He said that Sripathi's EEG though still certainly very abnormal because his brain is not working as it should. But the best part is the several series of spikes seen in his earlier EEG 3 months back have sort of disappeared now. Which is like a great thing. Which means there are chances that his brain can develop. We still have a long way to go but atleast we are on the road now. Ok now my question was whether he still needs this dreaded vaccine? And after some thinking Dr.W agreed to hold on the DTaP. So bye bye to the next three doses for now. I do not want to stand and watch Sripathi suffer with all those ridiculous reactions of unstoppable screaming and shivering and seizing. And Dr.W said we could increase Sripathi's Keppra to 5 ml for a week and then go back to 4 just to control these out of the vaccine seizures. Also give him a bolus of 4 ml today.

Then Aravind left to bring the car which was parked 20 minutes away from the Hospital as the garage 12 was full when we arrived. In that time I went to the progressive care unit on the 7th floor of the West tower, hoping to see Hannah and Carrie. Well not much luck, one Sripathi was not allowed into the room where Hannah was staying. next they gave me Hannah's room extension number and I called, but looks like Carrie was not around and nobody answered. So I left a card with a nurse and asked her to leave it in 711.

I've seen enough of unwell children for a day, we returned home gave Sripathi his bolus medicine and later in 2 and half hours time i gave him his regular seizure medication and the bad and carless parent that i'm forgot to start increasing that dose to 5 ml as told by the doctor. Why am I like this. bang me.

I should not be blogging in this frame of mind.