infection

Srikar is having fever for the last few days. He is having high fever from today.
Yesterday he had Lumbar Puncture to check for any infection. But the fluid did not show of any infection. His white blood cell count is also very high, for a few days. His blood test result came out to be normal. But till now they are not able to find out what infection he might be having. He had a CT scan done few hours ago. we are waiting on the results.

His staples were removed yesterday. He still has the fluid in his head on the left side.

Please pray for Srikar that his fever and infection goes away pretty soon.

out of PICU

Srikar is out of PICU today morning. His sleep timings are really messed up. He is sleeping all day and kind of awake during night. We tried to feed him through bottle today to check if can take food by mouth. He did fine with the bottle. We will try to give him more feeds through bottle tomorrow. He is trying to cry whenever he is uncomfortable, but he is not able to do becasue of hoarse voice due to the breathing tube. So we are not able to know how he doing with the pain.

waiting to leave PICU

Srikar was more awake today evening. He was trying to chew his left hand, (due to teething) which he is used to do before the surgery. He was moving his left hand and leg . He is moving little bit of his right hand and leg. He looks very very tired though. We are supposed to leave the PICU today, but waiting for a bed to become available in the other floor.

shaking

We had concerns yesterday about Srikar's shaking and tremors. Yesterday evening I noticed that Srikar was shaking his good hand (left hand). Initially I thought he might be cold and covered him. But later I saw his hand still shaking and he is lip smacking and lightly raising his eyebrows. We are concerned and let the PICU doctor know this. He said that it might be seizures or might be shaky due to sedation for long time. Today morning we discussed this with Neuro surgeon and Neurologist and both of them assured that, this is due to the brain healing and rewiring process.They are expecting more shaking for few more weeks. We are relieved to know that these are all part of brain healing process.

Otherwise Srikar is doing good and we might be out of PICU tomorrow.

Drain tube is out

Srikar had his drain tube removed this evening from his head.
He got very nasty skin rashes on his cheeks and forehead due to the bandages used to hold his breathing tube and head. Looks like his rashes are irritating and he is using his left hand to rub on it.
If Srikar takes it well we might be out of PICU in a couple of days.

breathing tube is out

Srikar is recovering slowly. His breathing tube was removed today. He opened his eyes yesterday, but looked very drowsy. Today he is little more awake, but still very very sleepy.
The wrap around his head was removed this morning, and we can see the incision and staples. We had a hard time looking at his incision and staples. The drain from his head will be removed soon.

Thank you all for your prayers and continue to keep him in your prayers.

04/20 Update

Today Srikar seemed to be more like Srikar. Swelling on his face is reduced by a considerable amount. His bed is raised to an angle of 35 degrees. He is sticking his tongue a little bit out (He always used to do that at home). His cheeks are still a little swollen. He is moving his left hand alot. They have reduced his sedation and they are planing to remove his air tube by tomorrow. And they are also thinking to wake him up tomorrow. They started to feed him the formula again today. Dr. Vining came by to check on him in the evening.

We also received a package from "The Hemispherectomy Foundation" for Srikar. Thank you for praying for Srikar's recovery and well being. Coincidentally its his 10th month B'day today. Hopefully he will cut his cake in a couple of days. 

Another Update!!!!

Just came back from the hospital after visiting Srikar. He is doing fine. His head is raised another 20 degrees. His swelling is lot less than this morning. He is having some urine infection and is being treated with antibiotics. He is moving his body a little bit. In the morning his eyelids were all swollen up but now he looks a lot like himself. Yesterday his nose was completely leveled into his face. Now I can see his nose. He is recovering slowly.

Update 04/19

Hi,

   Srikar is doing fine. He is looking a little less swollen than yesterday. Yesterday they turned his head to straight from right. He looked to me all swollen up yesterday. Today morning he seemed to be less swollen. His temperature is normal and his heart rate is stable. Yesterday his heart rate was all over the place which made us a little worried. But today its all fine. They raised his head a little to an angle of 10 degrees and keep it that way for about 24 hours. 

Srikar is doing fine and is recovering. Thank you all for your prayers for his well being. Please keep him in your prayers for his recovery.

Update 04/17

Hi,
Srikar is doing fine. He had some issues regarding his hemoglobin count and he was given one unit of blood. He had a CT scan this afternoon and everything is fine. He seemed to me a little puffy. He is doing fine and we think his air pipe will come off tomorrow.

We are all praying for his recovery and hope you will also keep him in you prayers for a couple more days. Thank you all for your well wishes and prayers for Srikar.

The Day After!!!

10:00 am - Went and visited Srikar. He is doing fine.. But lots of tubes and pipes going in and out of him.. I think there are like 10 -12 things connected to his body. We are told he is doing fine and there are no seizures so far.

11:50 am - Just came back from the PICU. Srikar is doing fine. Dad is sitting besides him. He is moving a little once in a while which is good as per Dr. Vining who dropped by this morning to check on Srikar.

2:20 pm - Just went to check on Srikar again. He is doing fine. They started feeding him formula by tube today.

3:50 pm - Dr. Carson came by to check on Srikar. He said that he is pleased with Srikar's progress. Dr. Carson said the moments in Srikar are exactly what he has expected. He joking said that Srikar might have read the manual and is doing exactly by the book.. :).. He also said that the functionality might have been transferred to the good side before the surgery itself.

I got a chance to take a picture of him this morning but I am not posting the picture here on the blog. But I am putting the link below. Please be advised that he is connected with many pipes and tubes going in and out of his body. Its not a pretty sight. If you want to see the pictures the link is below. Viewer discretion is advised.

Click here to see Srikar's Picture in PICU.

8:30 pm - I just came after checking on Srikar. 7:00 pm to 8:00 pm was shift change so we had to leave. We went back at 8:00 and Srikar is doing fine. Everything is going accordingly. He looks a bit more swollen but we were told that it is normal for 24 to 48 hours of surgery.

10:00 pm - I went again into the ICU to check on Srikar. He is doing fine. They were cleaning his food tube and air tube at the time I went in. He is moving a little. His right eye look a little more swollen than I saw him last time. He is also having a little low temperature but nothing to worry about.

Thank you all for your prayers and well wishes. Please keep praying for Srikar. Please keep Srikar in your prayers for his quick recovery.

11:00 pm - We came back from the hospital just now and Srikar is stable and doing fine. We got a chance to take another picture of him and it is added to the link below. Viewer discretion is advised.

Click here to see Srikar's Picture in PICU.

Thank you all for you well wishes and support. Please keep praying for Srikar's quick recovery.

Day of the Surgery

Hi,

4:45 am - Today is the day of the surgery. We all woke up pretty early. Srikar is still asleep. Praying to God to be with Srikar and us at all the times and give us strength and courage. We have to take him to the pre-op by 6:00 am.

6:00 am - Just came to the pre-op room at John Hopkins Hospital. Waiting for the paper work. Srikar is still sleeping.

7:15 am - Srikar is all ready for his surgery. Only one parent is allowed to take him into the operating room. His dad took him into the OR. He just went into the OR. We are waiting in the waiting area. Praying for everything to go smoothly.

9:15 am - Just got a word from the OR. They are about to begin the surgery and everything is going smoothly so far.

11:20 am - Dr. Vining just came from the OR and told us that everything is going on smoothly.

12:50 pm - Dr. Vining came by again to tell us the surgery is going on smoothly and Srikar is doing fine. They started removing the tissue. The gave us the hair of Srikar which was shaved off his head beore the surgery as we requested. She told us everything is going on as planned and smooth. She told us that they have removed the temporal lobe and are working on the frontal lobe.

2:35 pm - Dr. Vining came in to give us the update. Everything is going on well. She told us that they are working on the Parietal Lobe. 2/3 of the Frontal Lobe has been sucessfully removed. There is a little more bleeding than expected but she said that is not unusual amount.

2:45 pm - We got another update call from inside the OR. They told us everything is going on smoothly, but we still are hours away from the completion of the surgery. Dr. Vining told us earlier that the surgery is going on a little slower than usual.

4:50 pm - Dr. Vining just came in and gave us an update. All the abnormal tissue has been removed. She told us that they have started cleaning up and closing which will take another hour or hour and half. Everything went as expected as far as resection is concerned.

7:00 pm - Dr. Carson just came by and told us that the surgery is complete and Srikar will be coming out of OR in a few minutes. He said that Srikar tolerated the long surgery very well. The surgery took longer than expected due to tissue abnormality and coagulation issues at the end of the sugery. Dr. Carson said that everything has been taken care of. Dr. Carson termed the surgery to be "Intresting".

7:20 pm - Well, after a little over 12 hours Srikar came out of the OR. They took him into the PICU. By God's Grace everything went well and smoothly.

11:00 pm - Just came back to the room from the PIC. Srikar is doing fine.

Pre-op

Hi ,

Srikar had pre-op today at 10 A.M . Appointment with Dr.Carson also went well on Monday. He explained us the procedure . Dr.Vining dropped by during our appointment on monday. She did have a look at Srikar and said she will be there in O.R during the surgery.

We will be leaving to the hopsital tomorrow morning at 6 A.M. Please keep Srikar in your prayers.

Lakshmi

On Way to Baltimore

Today morning Srikar left for Baltimore along with his parents. He is undergoing brain surgery at John Hopkins Hospital in Baltimore on Wednesday the 15th.

He was sleeping all the way to the airport. He was also sleeping during the security check. He didn't sleep the night before the journey. I guess he knew that he is going somewhere seeing his mom and dad packing the bags.... :)..

Have a nice flight kiddo...
luv
Uncle.

From Uncle To Nephew

Hi Srikar..
May God be with you in these hard times and be always on ur side. Get well soon..
luv..
Uncle.

Srikar

This is Srikar. He is 9 months old. A few months ago Srikar was diagnosed with seizures(infantile spasms). The MRI showed that he has dysplastic(abnormal) tissue on the left side of his brain. The EEG testing showed seizures originating from left side almost continuously. The only way to control his seizures is to undergo a procedure in which left half of cerebral cortex will be removed. He will be undergoing the surgery at John Hopkins Hospital in Baltimore on 15th April.