In Loving Memory of Srikar.

Dear Srikar.. May your soul rest in peace.

SRIKAR POTLURI (Jun 20, 2008 - Mar 20, 2010)

Funeral service :
Monday, March 22, 2010.
Time : Viewing starts at 10:00 am
Address: Hughes Funeral Homes,
9700 Webb Chapel Road,
Dallas, TX 75220-3556
Phone : (214) 350-9951‎

still in same condition

Srikar is still in same condition. He is not responding much today, like yesterday when we touched him. His shunt and external drain is removed. They placed a new external drain. His antibiotics dosage is increased little bit today. His body is still not able to regulate the temperature, and also his blood pressure kept dropping two times last night and two times during day time. we are waiting for the anitbiotics to kick in and clear the infection which might be another three to four days to see any difference. We are also worried how his brain is effected due to infection. We will know once he has an MRI, which will happen once his blood pressure is in control.

Please keep Srikar in your prayers for few more days.

bad day

I should say Srikar had a bad day today compared to worst day yesterday. His blood pressure dropped two times today. He is still not responding. Finally they found the bug today and are giving the necessary antibiotics. They did a 30 min EEG for any seizures ,and found out the right brain has very low voltages, but no seizures. The PICU doctor asked the neurologist if they can do it for more time as he has not happy with the 30 min result. So they started the EEG later today evening for 24 hrs.
The neurologist is also waiting for the infection to come down to check for any brain damage. We are concerned how much this infection has damaged his good brain. when we pinch his hands he is moving his hands and see some EEG activity, but when we touch or pinch his feet, he pulls them back, but EEG doesn't show anything.
They might remove the shunt tomorrow afternoon, if he is stable tonight and tomorrow morning.
Please keep Srikar in your prayers for smooth removal of shunt, and for speedy recovery from the infection

critical, but stable

Srikar is in critical condition, but stable. Afternoon his blood pressure went down and almost went to cardiac arrest. The doctor found it on time and worked on him. Right now he is getting blood , phosphates, potassium and calcium.
Please keep srikar in your prayers.

infection

We came to know that his infection is bacterial meningitis. He had a CT scan, and we see that there is fluid build up, and the looks the shunt is not pumping enough of it. so they put an external drain and also a small incision near his chest and took out the shunt tube for external drainage. According the neurosurgeon, pressure is very low, but doesn't know why the fluid is building up.
We see some fluid coming out from the shunt, but nothing from the external drain.
He is on antibiotics and electrolytes. He will be getting some blood also. Central line and picc line are placed few minutes ago.
He is on ventilator and is very very sick. Please keep srikar in your prayers.

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.

trying to crawl

It has been a long time since I updated about Srikar. No major milestones, but he is improving a lot. His is trying to crawl on his tummy. His head control improved a lot. He is babbling and shouting for hours and wants somebody to play with him all the time when he is awake. Though he doesn't like the ramp, he gets down the ramp and tries to move some distance.He is working on his sitting posture.
He thinks grandma is to pamper him and feed him, but not for therapy. He doesn't let grandma do therapy, and whenever he is hungry and sees grandma he starts to cry for food, eventhough me and dad are sitting right there, he doesn't bother to ask us.

We called Hopkins couple of weeks ago to discuss about his seizures. They asked us to send them latest MRI and EEG which he had this week. We tried four medications with no success in controlling his seizures. MRI clearly showed a connection between left and right hemisphere, and the neurologist thinks the seizures are originating from his left hemisphere in the deep midsection.

We will be flying to California during Thanksgiving week to his uncle's place. We always notice that when we are outdoors for couple of hours and after coming home, Srikar behaves as if he missed home and is excited and happy to be home. This will be an intersting trip to see how Srikar takes it.

rolling over

Srikar rolled over for the first time today after the surgery. He used to rollover once in while before the surgery.He was trying to roll over for the last three days. Today morning I put him on his back. He turned to his side and was trying to roll over. He is trying his best to do so. Finally after 8~10 tries he rolled over and was smiling at me. He rolled over couple of times today by himself.

Our little guy still has cough and runny nose. He got a break from his therapy this week.

fever

Srikar is having fever from Thursday afternoon. Yesterday we took him to pediatrician, for blood test just to make sure his fever is not due to infection. Blood test came out normal. He was only taking milk for the last two days. He looks very tired and dehydrated. He is feeling little better today.He had little bit of solids for lunch. He is having more seizures than usual due to his fever.
We went to a Plastic surgeon at Children's Medical for Srikar's nevus and extra tissue on his left cheek and neck last week. The doctor told there isn't any laser which works for his nevus and because of the possible shunt infection they cannot do anything about the extra tissue. I was disappointed with the doctor's response. I was hoping laser could remove his nevus.
We will start Developmental services with ECI from next monday. It is going to be 3 sessions/month and increase it to 4 sessions/month.
He is babbling a lot nowadays, and is also getting used to ramp. He loves to play peek-a-boo.

New Ramp

So this week had been a productive week. We noticed that Srikar is creeping a little when placed on his tummy. So we thought that if he is kept on some slope he will try to crawl. So last weekend we went to the Home Depot and built a ramp for Srikar. Father and Grandpa were the ones who built it and from a couple of days we are placing Srikar in the ramp.

On the first day Srikar was a little scared of the new development from flat surface to an inclined surface but yesterday and today he is doing much better. He isn't crawling yet but he is creeping little and little to reach the bottom end. And sometimes if he is angry he just lies there as if he is protesting... :) ...

Thank you Brande and Monika for your valuable information about the ramp. It was very helpful.

His therapy is also going great. He has been much more active in his OT, PT and ST. All his therapists are happy with his development. He has been holding his head straight much longer and he has been sitting in his Bumbo seat for a longer time.

Thanks to Srikar's Therapists Sarah (PT), Alyssa (OT) and Darrah (ST) for working so hard with Srikar and be a part of his progress.

starting new medication

Srikar is put on new medication to control his myoclonic jerks. He is having 20 ~25 of those everyday. Sometimes he is not bothered by those, but sometimes he takes few seconds to come out of those.
His incision on his stomach and head are healing well according to the Neurosurgeon who did shunt surgery.
Srikar also had appointment with Pediatric opthalmologist last week. His optic nerves are looking fine, but his eyes are little bit out of sync which is common in Hemi kids. Opthalmlogist might do a small procedure to correct his eyes in future. But for now we wait and see how he develops.

Nowadays he is enjoying his therapy and also finding ways to get away. He acts as if he is tired and wants to sleep As soon as I bring him out he is all smiling and shouting. He is using his left hand to explore other things and is moving his right hand up and down when he is happy and angry.

He is having great time with his grandparents and aunt.

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 .