A Pretty Tough Week

This week had been pretty tough for our little champ. Srikar slept all day on Tuesday (21st) and was not interested in taking food. Even though he woke up a couple of times he was not able to open his eyes and was fussing really bad. So we called his Neurologist and described the symptoms and he told us to go to ER and get a CT done.

We went to the ER and CT was done. Srikar was moved to PICU. On Wednesday LP was done to determine the pressure. LP indicated that Srikar was having hydrocephalus. On Wednesday also Srikar was sleeping all day till the LP. After LP he became more fussy. He started crying a lot. We were worried. We were told that he is having Hydrocephalus he needs a shunt in his brain. and there will be an incision in his head and a small incision near his abdomen.

On Thursday afternoon Dr. Price conducted the surgery and placed the shunt. Everything went well during the surgery. After the shunt surgery Srikar was sleeping all day. In the evening he woke up a little bit. But he was still not taking anything by mouth. On Friday he looked much better. We were moved to the upper floor out of the PICU. He started having his milk.

Saturday was a happy day for Srikar and all of us. We returned home by 2:00pm. Everything went well and Srikar is now much better. With the shunt in place he looks more active than I saw him on Tuesday. A tough week for our champ.. But champions never quit. :)

Please keep Srikar in your prayers and pray for his quick recovery and good health. Thank you all..

Hemispherectomy Reunion and post-op visit

Srikar had EEG and CT done last week. The startles that we are seeing do not register in the EEG like typical seizures, but from the way they looked in the video, his neurologist is leaning towards considering them and treating them as seizures. The CT did not indicate hydrocephalus. Regarding his post-op visit Dr. Carson (Neurosurgeon) is pleased with Srikar's post-op progress and thinks his myoclonic seizures might also be due to his nervous system still rewiring. Dr. Vining (neurologist) recommended couple of medicines for Srikar's Myoclonic seizures. Dr.Vining and Dr.Carson looked at the CT and think intracranial pressure is not an issue. Srikar started cooing, holding his head and definitely smiling a lot which he lost before surgery due to development regression from seizing. Because of the signs of progress, Dr.Vining and Dr.So do not think his current seizures need further surgery, at least in the short-term.

We had an amazing weekend at the reunion and it was nice meeting other kids and their families.

Srikar was also excited to be at the reunion. He didn't take his naps during daytime during those two days. He was looking at the people and lights and posing for the photographers.

Flying was breeze. Srikar was sleeping most of the time during our flight. We have met many familes and thier amazing kids and learned their stories. We did not get to meet all of the kids. Hoefully we will get to know more of them at the next reunion.

Neurologist appointment

Srikar had his neurologist (Dr. S0) appointment yesterday. Srikar is having startles from last few days, which we think might be seizures. Neurologist also mentioned that they might be myoclonic seizures, and wanted to do an 24 hr EEG monitoring. We mentioned him that we are going to John Hopkins next week for a follow up appointment and he scheduled monitoring for monday and tuesday, so that Dr. Vining at J.H can also check the results .