Day 19 : Mon, Feb 27, 2012
We are now into Day 5 at the Santa Clara Valley Medical Center. Last Wed, 22 Feb, Shayman was transferred from Lucile Packard to SCVMC to continue with his next stage of recovery - therapy.
We had spent 14 days at LPCH. It was a roller-coaster of emotions at the beginning. But we have been blessed and he's been progressing great.
We were naturally anxious about his transfer...adjusting to a new environment, to a new team of doctors, new regimen.
On Wed 22 Feb afternoon, I followed in the ambulance transporting Shayman from LPCH to SCVMC. Thankfully, it was uneventful. We settled in pretty well in a single room.
In the 5 days, he's made fantastic improvement. The image of the frail him seemed so far away, but will somehow always be at the back of our minds.
His determination to get up on his feet and regain his independence is by far the greatest motivating factor. His desire to try, never give up. We can see how hard he is trying...to walk, to stand, to maintain control of his muscles, and to talk.
The therapists had done a splint for his right foot as it was leaning inwards and they had to correct the muscles before they stiffen in that manner. But just a day after having it on, the therapist saw a significant improvement on his right big toe, and decided he didn't need the top half of his splint. The splint was to be a temporary one before a custom-made brace was done for him. But just this morning, another piece of good news. His right foot was doing so well, the therapist felt he could do without the leg brace now! Of course, they always cautioned that it was a 'let's see how he does in a day or two'.
Shayman is really vocalizing this morning. Saying his colors while doing his legos, thank you, good, enough. This boy is really trying. And we are so proud of him. We are constantly encouraging him, motivating him.
He's going to be a really happy boy tomorrow when Uncle Dhini comes.
Monday, February 27, 2012
Monday, February 20, 2012
Shayman, our little boy
It's been too long since I last wrote on this blog. Time just flew by day after day and our little angels have grown day by day.
And now I am writing again. It's very painful to write this now. It will probably be very painful to read this next time. But it is a part of our lives; it is a part of Shayman's life, and we want him to understand. It's his right to know.
On Thursday, Feb 9, 2012, our world turned upside down. What was to have been an ordinary trip to the pediatrician turned out to be something totally unforeseen. After a series of tests, he was diagnosed with ADEM - acute disseminated encephalomyelitis. We had never heard of it. It came crashing down on us like a ton of bricks.
On Wednesday, Feb 8, 2012, we had noticed that he was more lethargic than usual, and not wanting to eat or drink, and drooling. We left it as lethargy from the cold he had, and felt that since we were scheduled to see his PD the next morning, he should be fine.
At the PD's office, when his PD, Dr Susan Fong, wanted a second opinion from another doctor, we started to worry. After consulting in private, they recommended we bring him in to the ER right away. She had informed the ER to expect us and gave them the rundown of his history.
We hurried to the Lucile Packard Children's Hospital at Stanford, Palo Alto. It was an agonizing wait at the ER. Shaayla was scared. We were scared.
We were transferred to the treatment room very quickly. By then, Shayman was barely awake. Vitals were done - normal. Then came the need for blood tests, urine test, chest x-rays, spine x-rays, and CT scan. We had to wait again for the results. They couldn't find anything. Next was to do a lumbar puncture.
By then, Suresh had taken Shaayla home for a rest. We knew it was going to be a long night.
Shayman was crying uncontrollably during the spinal tap. I was holding back my tears. They had to stop. When he calmed down, they tried again. This time, with me holding his head and hands. Another 2 nurses held him in the right curled up position that he had to be in. He started crying again. I cried this time. But thank goodness, he got so tired, he fell asleep, calmed down, and the doctor was able to remove the fluids - 4 tubes of it. Then, more waiting...for the results of the spinal tap.
(Day 10 : Now at 3pm, on Sat, Feb 18, 2012. I had placed Shayman's weaker right arm on his head and let go of my hand. He dropped it down to his eye level and kept it there for a good 20sec!!! Before it cam down slowly to his side. Told him how proud I am of him. Told the nurse!!! It showed he was able to control his muscles!!! Fantastic!! )
Before the results of the lumbar puncture arrived, we were moved to the Pediatric ICU. It was scary. All sorts of scenarios were playing in my head. I didn't know what to think. They recommended a MRI scan immediately. It was going to take at least 2 hours and I could not be by his side. I watched our little boy being wheeled alone into the elevator. I sat down in the room and waited. My mind, a blank.
Mid-way, a nurse came. She said he was doing fine. although he woke up in the middle, they gave him a sedative and he slept through the rest of the scan. But during the scan, they had also given him another 2 IVs - one on his foot and one on his arm...in addition to the one already on his left arm.
2.5hrs later, he was wheeled back in to the room. I remember the doctor, very calmly kneeling beside me, telling me his diagnosis - ADEM. I don't know what to make of it. As she spoke, I could only remember crying. I don't know how long it was before I calmed down. I called Suresh who was at home with Shaayla. He called Ramesh. I called my Mum. Sleep was gone from us. Questions started coming - what did we do, what did we not do, could we have done something, why us, why our sweet little boy?
It was hard for our families to take the news. No one really knew how to react because it was so sudden, so unknown, and so difficult to understand. Why our innocent little boy?
Through the night, Suresh and I exchanged messages on our phones. I decided it was too much for both of us to bear and we really needed all the emotional support we could get. I posted about his condition on Facebook. Friends and family started calling, messaging, and posting their wishes, and prayers. We are so thankful for their support.
Day 2 : Friday, 10 Feb, 2012
We were into day 2 of the 5-day course of steroids. Shayman was still drowsy, and very weak. We look forward to day 5 of the steroids, hoping for the best.
Over the weekend, many friends came to visit. Every one had a hard time understanding. I spoke to countless of people - social workers, nurses, doctors, even the chaplain...all in the hope of finding some relief.
Day 3 : Saturday, 11 Feb. 2012
I was with Shaayla at the post office when Suresh called. He didn't sound right over the phone. We hurried to the hospital. Doctors had told him that even after full recovery, Shayman might have some learning disability.
That thought had been on my mind since the first night. I tried to push it away. But with the doctors telling Suresh, I had to confront it.
We were going to be strong and work through this with Shayman.
Thanks to Arthur and Natalie, Shaayla had a good weekend with them and Suresh and I focused on Shayman.
Day 6 : Tue, 14 Feb, 2012
It's Valentine's Day. On this day of love, we wanted nothing more than to hear our little boy laugh again.
Yesterday was the last dose of steroids and today was observation day to decide the next course of action.
Late that night, it was decided. They tried to rouse him from sleep and finally had to pinch his toe to wake him up.
Day 7 : Wed, 15 Feb, 2012
This day was to be day 1 of IVIG. It was basically introducing immunoglobulin into him. But it was not without possible side effects - fever, chills, rashes, erratic blood pressure...I felt myself holding my breadth as the doctor went down the list.
10mins before the IV started, nurses came into the prep the room...breathing masks and a whole lot of other apparatus. It was nerve-wrecking.
Thankfully, the 3.5hrs of IV went by uneventfully.
Day 9 : Fri, 17 Feb, 2012
3rd dose of IVIG was completed today. We could see improvement every day since the IVIG. He was more alert, His reflexes were improving.
Day 11 : Sun, 19 Feb, 2012
Shayman gave a really big smile today. Ms Varsha and Ms Priya from his preschool class at Challenger School paid him a visit and he gave him a really big smile. It made our day.
Day 12 : Mon, 20 Feb, 2012
The weekend was observation, monitoring his progression. Doctors were also monitoring his sodium level as it seemed to be on the low side.
Because he was coughing slightly, doctors started him on a 5-day dose of antibiotics, just to rid his body of any viruses.
Last nite, he was fussy from 12 to 3am, poor Suresh didn't manage a wink. Hopefully he does way better tonite with some benardryl.
It was a good day, overall. It was the President's week holiday for Shaayla, so she came in to the hospital with me. She was a wonderful big sister...cheering him up, reading to him. And most important, playing with the iphone. That perked his attention and I was able to get him to sit up for a good 20mins.
And now I am writing again. It's very painful to write this now. It will probably be very painful to read this next time. But it is a part of our lives; it is a part of Shayman's life, and we want him to understand. It's his right to know.
On Thursday, Feb 9, 2012, our world turned upside down. What was to have been an ordinary trip to the pediatrician turned out to be something totally unforeseen. After a series of tests, he was diagnosed with ADEM - acute disseminated encephalomyelitis. We had never heard of it. It came crashing down on us like a ton of bricks.
On Wednesday, Feb 8, 2012, we had noticed that he was more lethargic than usual, and not wanting to eat or drink, and drooling. We left it as lethargy from the cold he had, and felt that since we were scheduled to see his PD the next morning, he should be fine.
At the PD's office, when his PD, Dr Susan Fong, wanted a second opinion from another doctor, we started to worry. After consulting in private, they recommended we bring him in to the ER right away. She had informed the ER to expect us and gave them the rundown of his history.
We hurried to the Lucile Packard Children's Hospital at Stanford, Palo Alto. It was an agonizing wait at the ER. Shaayla was scared. We were scared.
 |
| Shayman at the ER |
By then, Suresh had taken Shaayla home for a rest. We knew it was going to be a long night.
Shayman was crying uncontrollably during the spinal tap. I was holding back my tears. They had to stop. When he calmed down, they tried again. This time, with me holding his head and hands. Another 2 nurses held him in the right curled up position that he had to be in. He started crying again. I cried this time. But thank goodness, he got so tired, he fell asleep, calmed down, and the doctor was able to remove the fluids - 4 tubes of it. Then, more waiting...for the results of the spinal tap.
(Day 10 : Now at 3pm, on Sat, Feb 18, 2012. I had placed Shayman's weaker right arm on his head and let go of my hand. He dropped it down to his eye level and kept it there for a good 20sec!!! Before it cam down slowly to his side. Told him how proud I am of him. Told the nurse!!! It showed he was able to control his muscles!!! Fantastic!! )
Before the results of the lumbar puncture arrived, we were moved to the Pediatric ICU. It was scary. All sorts of scenarios were playing in my head. I didn't know what to think. They recommended a MRI scan immediately. It was going to take at least 2 hours and I could not be by his side. I watched our little boy being wheeled alone into the elevator. I sat down in the room and waited. My mind, a blank.
Mid-way, a nurse came. She said he was doing fine. although he woke up in the middle, they gave him a sedative and he slept through the rest of the scan. But during the scan, they had also given him another 2 IVs - one on his foot and one on his arm...in addition to the one already on his left arm.
2.5hrs later, he was wheeled back in to the room. I remember the doctor, very calmly kneeling beside me, telling me his diagnosis - ADEM. I don't know what to make of it. As she spoke, I could only remember crying. I don't know how long it was before I calmed down. I called Suresh who was at home with Shaayla. He called Ramesh. I called my Mum. Sleep was gone from us. Questions started coming - what did we do, what did we not do, could we have done something, why us, why our sweet little boy?
It was hard for our families to take the news. No one really knew how to react because it was so sudden, so unknown, and so difficult to understand. Why our innocent little boy?
Through the night, Suresh and I exchanged messages on our phones. I decided it was too much for both of us to bear and we really needed all the emotional support we could get. I posted about his condition on Facebook. Friends and family started calling, messaging, and posting their wishes, and prayers. We are so thankful for their support.
Day 2 : Friday, 10 Feb, 2012
We were into day 2 of the 5-day course of steroids. Shayman was still drowsy, and very weak. We look forward to day 5 of the steroids, hoping for the best.
Over the weekend, many friends came to visit. Every one had a hard time understanding. I spoke to countless of people - social workers, nurses, doctors, even the chaplain...all in the hope of finding some relief.
Day 3 : Saturday, 11 Feb. 2012
I was with Shaayla at the post office when Suresh called. He didn't sound right over the phone. We hurried to the hospital. Doctors had told him that even after full recovery, Shayman might have some learning disability.
That thought had been on my mind since the first night. I tried to push it away. But with the doctors telling Suresh, I had to confront it.
We were going to be strong and work through this with Shayman.
Thanks to Arthur and Natalie, Shaayla had a good weekend with them and Suresh and I focused on Shayman.
Day 6 : Tue, 14 Feb, 2012
It's Valentine's Day. On this day of love, we wanted nothing more than to hear our little boy laugh again.
Yesterday was the last dose of steroids and today was observation day to decide the next course of action.
Late that night, it was decided. They tried to rouse him from sleep and finally had to pinch his toe to wake him up.
Day 7 : Wed, 15 Feb, 2012
This day was to be day 1 of IVIG. It was basically introducing immunoglobulin into him. But it was not without possible side effects - fever, chills, rashes, erratic blood pressure...I felt myself holding my breadth as the doctor went down the list.
10mins before the IV started, nurses came into the prep the room...breathing masks and a whole lot of other apparatus. It was nerve-wrecking.
Thankfully, the 3.5hrs of IV went by uneventfully.
Day 9 : Fri, 17 Feb, 2012
3rd dose of IVIG was completed today. We could see improvement every day since the IVIG. He was more alert, His reflexes were improving.
Day 11 : Sun, 19 Feb, 2012
Shayman gave a really big smile today. Ms Varsha and Ms Priya from his preschool class at Challenger School paid him a visit and he gave him a really big smile. It made our day.
Day 12 : Mon, 20 Feb, 2012
The weekend was observation, monitoring his progression. Doctors were also monitoring his sodium level as it seemed to be on the low side.
Because he was coughing slightly, doctors started him on a 5-day dose of antibiotics, just to rid his body of any viruses.
Last nite, he was fussy from 12 to 3am, poor Suresh didn't manage a wink. Hopefully he does way better tonite with some benardryl.
It was a good day, overall. It was the President's week holiday for Shaayla, so she came in to the hospital with me. She was a wonderful big sister...cheering him up, reading to him. And most important, playing with the iphone. That perked his attention and I was able to get him to sit up for a good 20mins.
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