scary... scary... night

Srikar was acting all weird from last evening. first his eyes went all the way up and he was shaking and moaning. We let the nurse know about this. After 30 mins or so, his heart beat went all the way up to 205 and his left hand was doing weird things. It lasted for few minutes, and this continued every few minutes. They him two doses of Ataven, and also IV depakote,but the seizures did not stop immediately. he was hitting the bed with his right leg and his left leg was in the air, and his left hand was doing weird things. He was seizing continuously for 30 mins. They checked his shunt, and told us the pressure is not too high, and we asked them to tap it. We came to know that he has an infection, and were moved to PICU around midnight. He slept for few hours and was on antibiotics. Today morning his pupils weren't reacting and he wasn't gagging or coughing when the doctor pressured his tongue. They tapped the shunt today morning, but couldn't get any fluid. They think the shunt might be clogged and right now they are putting Srikar on breathing tube and are getting an emergency CT scan. The plan is to take off the shunt today and treat the infection.
We will update once we talk to the neurosurgeon.

3 rd day of surgery

Srikar had a rough night yesterday. He slept OK today morning. We were shifted from PICU today afternoon. He did not like nurses touching him during the shifting process and started crying. He got pedialyte today afternoon, but did not take it well. He threw up four times from evening and was miserable and nauseated. Rough evening too.... Hopefully he and dad will have uneventful and restful night.

2nd day of surgery

Srikar is sleeping most of the time today. He is having fever from last night. He had a very rough day yesterday, but today was an uneventful day and am hoping the same tonight too. He wakes up for couple of minutes and goes back to sleep. He is not eating/drinking anything yet. If he was little perky and could eat something by mouth, we would have been out of PICU.
He is taking little bit more time than the neurosurgeon expected. Hopefully he will wake up for more time and eat something tomorrow. He also had an NG tube inserted as we are having trouble giving his medications.

day of surgery

9:30 AM got an update from OR that Srikar's surgery started.
12:15 PM Srikar is out of OR and in PICU. Dr. Sacco told us that they disconnected the connection between the hemispheres. We might go inside in 10~15 mins to see him


Srikar is moving little bit. He is waking up, crying and going back to sleep. His breathing tube was removed right after surgery and he is doing well without that.

Srikar woke up 30 mins ago and had 16 seizures. He is bothered by them and started crying whenever he is having one. He got Motrin few minutes ago and went back to sleep. He is crying in his sleep whenever he has a seizure. My heart aches to see him in such a pain.

redo surgery

Srikar is scheduled for redo surgery on 9 Mar 10 i.e tomorrow at Medical city, Dallas by Dr. Sacco and Dr. Price. Getting the surgery done at Hopkins this time is going to financial burden to us as Dr. Carson does not take our new insurance. So we decided to get it done at Dallas this time.

The neurologist at Hopkins, Dr. Vining has some concerns regarding his EEG. His EEG shows right side spikes whereas his clinical seizures always shows his right hand and right leg moving. After discussing with the other neurologists at Hopkins and talking to Dr. So (Srikar's neurologist in Dallas), she too agreed that removing the remaining left side tissue and disconnecting hemispheres might benefit Srikar.

We are concerned about his surgery and recovery as he had a long surgery and recovery last time. Please keep Srikar in your prayers for a smooth surgery and recovery.

wonderful holidays

Srikar had wonderful holidays with family. Srikar's uncles and aunts came to Dallas for holidays. We had fun with family and went to local attractions.
Srikar started rolling over both sides easily. He doesn't want to sit in our laps anymore and prefers to be down on his tummy. He got a stander couple of days ago. He also got a stroller and bathchair.
We tried the stander today for few minutes. After we put him in the stander, he started looking all around the room. He is making open mouth sounds and is working on close mouth sounds.
We haven't heard from Hopkins regarding his surgery date. hopefully we will hear something next week.

back from our trip

Srikar had a good trip to CA. He was excited to see his grandparents especially grandma who flew to CA few days before him. Unfortunately he caught cold and cough the next day, but that did not prevent him from enjoying himself. He was pampered a lot by his uncle & aunt. He was fussy intially when we got in the plane. He did not want to sit in our laps. Once the engine started, he was eagerly listening to the sound and the announcements, and slept after sometime.

I met Shawna who had a left hemi redo after 30 yrs of her first surgery at U.C.Davis . Dad and Srikar couldn't make it as they were sick.


Our neurologist called us this week to discuss about srikar's surgery. He recommended us going ahead with a redo to remove the remaining tissue and also disconnect the hemispheres. We haven't heard back from Hopkins yet.