Back in Dallas

Hi guys.. So finally we are back home in dallas. Srikar is doing fine and well. He is very happy to be back in dallas. He is happy to see his grandparents. His food pipe is also taken off and he is taking everything now by mouth. And on sunday he had his favorite food.. Mango Sauce. :).. And he has been smiling alot now that be is back home away from the hospital.

Thank you everyone for your prayers for Srikar. It was all your prayers, love and support that were with Srikar and with us in our hard times and now we are safely back home in Dallas. Thanks a lot.

surprisingly taking bottle

Srikar is surprisingly taking bottle from today morning. We had an appointment with a feeding therapist as per his Neurologist suggestion. Therapist is happy to see him take bottle and eat and some solids. So she didn't have much to work with him. If the neurologist is happy with his feeding we might take off his NG tube tomorrow

Dallas here we come......

Finally out of Hospital !!!!

Hi all.... As I am blogging from the room in Children's House Srikar is laying on the adjacent bed having his feed. Yes, we are out of the Hospital. Yesterday we were a little sure we will be out of the hospital in this week and today by evening 6:00 pm we were discharged from the hospital and we are now at the Children's House. Everything is well with Srikar. He had an EEG this morning and Dr. Vining confirmed that no seizure activity was recorded during the EEG. But he had one just before the EEG.

Other than not taking his food by bottle Srikar is doing great. For now they taught us how to feed using the NG tube. So for now all his food is through a small pump. From morning all people from different departments worked with us and helped us get out of the hospital. It is 35 days we were in the hospital. Srikar has an appointment tomorrow morning at Kennedy Krieger Rehab center and Friday morning he has an appointment with Dr. Vining.

And the good news we will be back home in Dallas on Saturday. Tickets are booked and Srikar is all excited to get back home from here as soon as possible. (And we are too).

not taking bottle

Srikar stopped taking bottle from last week. His swallow test today came out to be normal, and nobody could explain us why he is not taking bottle. When we gave him some puree he took it. He did not have any fevers from last two days which is very exciting.He had seizures three times today. He had one when the neurologist is checking him. He might get an EEG tomorrow to check where the seizures are originating. I hope he is not getting them from his good side. Just when we think things are starting to improve, we go backwards again. He is sleepy most of the time from last few days. He looks very very tired.
Since his swallow test came out normal, we might go home sometime this week with a feeding tube.
We are tired ,exhausted and badly want to go home. We are hoping he will feel better once we go home.

A Happy day

Hi... So finally Srikar shouted at me today. Wasn't well yesterday so was not able to visit Srikar yesterday. So when I went to see him this morning he looked at me for some time like a minute and then shouted at me with a smile. As if he's asking me " Where have you been?". I can't express the heights of my happiness. First time he has done something like this after the surgery. Just wanted to share this happy moment. Srikar is doing fine and well. Don't know yet when we will be discharged from here but we will have a better picture by tomorrow morning.

2 seizures last night

As happy was I yesterday when I left the Hospital I was as much sad to learn this morning that Srikar had 2 seizures last night. Fever spiked up around midnight and came back around 5:00 am. Mom was holding him he had the seizures. And these lasted for like 15 seconds each. These were the longest after the surgery. Just came to know abt this. thought of updating. Please pray for Srikar's quick recovery. Thank you.

A day of relief

Today was a day of relief. In the afternoon Srikar was taken for the MRI and the Spinal Tap. He was there for around 3 hrs. They stopped his antibiotics last night. He had fever last night. But they are not a regular as they were used to be. Today it spiked up after 14 hrs which used to be a 6 hr interval. We was given anesthesia for his lumbar puncture so he was sleeping all day. He woke up in the middle for a little bit but again went back to sleep. I will say he was sleeping like a baby when I left the hospital :).

In the eveing Dr. Carson came by to tell us that there is nothing in the MRI to be worried about. Everything is fine with his MRI and the Lumbar puncture also was clear. He also told us that his spinal fluid looked clear and the initial tests are all negetive. But they are testing it for another couple of days to see if there is anything. He had a little fever in the evening.

A day of relief for our little guy. Mostly of the anesthesia but we r happy that he is so peacefully asleep today.

Fussy Days Yesterday and Today

It will be a whole month tomorrow since we arrived at John Hopkins Hospital here in Baltimore. Srikar is doing ok but his fevers are not coming down. He is getting fevers every 6 hours. He is been staying very fussy all the time. He has been crying a lot. Yesterday we saw him a little happy in the evening. He was doing all the moving his hands and legs act that he used to do at home. He was playing along with us.

But again at night he vomited his milk. He was very fussy all day today. I think he is angry with the doctors and nurses. Everytime they come he will start crying. I think he wants to go home.

They were scheduled to do a spinal tap today and an MRI scan tomorrow. But I think they scheduled them both for tomorrow. They still can't figure out why his fevers are spiking up every 6 hours. So they are stopping his antibiotics tonightand see if they are causing the fever.

Yesterday I was happy to see Srikar the way he used to be. playing, hitting is hands and legs to the bed, making faces, trying to talk as if he has lots to say. And of course a new habit. I will post the video later.

Thank you all for keeping Srikar in your prayers and praying for his well being.

seizures

Srikar is still battling with high fevers. He had a CT scan today and everything looks OK according to the doctors. He had a seizure today afternoon which lasted for 7 sec. He had a seizure day before yesterday, but we weren't sure if it is a seizure or not. But today he definitely had one. Dr. Vining his neurologist doesn't have an answer right now for his seizure, but she thinks it might be due to his high fever. It is scary to see him seizuring especially after the surgery.

Please keep Srikar in your prayers

fever

Srikar is having high fevers from last two days. He is having fever every 6~8hrs. Doctors stopped his antibiotics on Friday to check if his fever is due to reaction by medicine. He had high fever on Saturday and is back on antibiotics. He is getting two antibiotics from saturday, but his fever is still not under control.

Please keep Srikar in your prayers.