August 30, 2008
This day has been amazing. Aiden has had even less pain and discomfort today so he wanted to play a lot. We rolled the ball back and forth to each other and we colored. He scooted around the kitchen while I made breakfast and he got in to the Tupperware just like he had done before the surgery. He has a Leap Frog Fridge Phonics and he put the letters in the slot. I would almost forget he had the surgery if it weren't for the "t" shaped incision on his head.
The most amazing thing was when he walked. I posted a video to capture the moment. http://www.youtube.com/watch?v=m6MrU_qrkO4
I can't wait to see his progress once he resumes therapy!
Saturday, August 30, 2008
Friday, August 29, 2008
Second Day Home
August 29, 2008
Aiden slept very well last night. No interruptions from nurses checking his vitals every two hours. He has had more energy today and even less pain. He's been laughing and smiling a lot. He even crawled on all fours despite the left sided weakness. He just gets stronger and stronger every day.
I just got word from Karen Ball at the Sturge-Weber Foundation that the pathologist at UCLA, Dr. Vinters, sent a portion of Aiden's brain tissue to the Blood and Tissue Bank in Maryland for a study on Sturge-Weber Syndrome. Before the surgery, I specified that I wanted to donate Aiden's resected tissue to be researched to help find out what causes this disease and maybe one day find a cure or less invasive treatment for others who have SWS.
Aiden's news story has been rescheduled to air on Monday, Sept. 1st on KABC-Los Angeles, Channel 7 (Southern California). I will also post the news clip on the website. The story is meant to raise awareness for Sturge-Weber Syndrome and to help other parents of SWS kids who are trying to decide if hemispherectomy surgery is right for their child. I would recommend neurosurgeon, Dr. Mathern, at UCLA to anyone considering this surgery. The level of care by doctors and nurses at UCLA was a huge factor in Aiden's quick recovery.
Aiden slept very well last night. No interruptions from nurses checking his vitals every two hours. He has had more energy today and even less pain. He's been laughing and smiling a lot. He even crawled on all fours despite the left sided weakness. He just gets stronger and stronger every day.
I just got word from Karen Ball at the Sturge-Weber Foundation that the pathologist at UCLA, Dr. Vinters, sent a portion of Aiden's brain tissue to the Blood and Tissue Bank in Maryland for a study on Sturge-Weber Syndrome. Before the surgery, I specified that I wanted to donate Aiden's resected tissue to be researched to help find out what causes this disease and maybe one day find a cure or less invasive treatment for others who have SWS.
Aiden's news story has been rescheduled to air on Monday, Sept. 1st on KABC-Los Angeles, Channel 7 (Southern California). I will also post the news clip on the website. The story is meant to raise awareness for Sturge-Weber Syndrome and to help other parents of SWS kids who are trying to decide if hemispherectomy surgery is right for their child. I would recommend neurosurgeon, Dr. Mathern, at UCLA to anyone considering this surgery. The level of care by doctors and nurses at UCLA was a huge factor in Aiden's quick recovery.
Thursday, August 28, 2008
Home
August 28, 2008
It's hard to believe but it's true. Aiden is home from the hospital!
Aiden has been doing so well, no fever, no infection, no complications whatsoever so everyone agreed it was time to send Aiden home to finish his recovery in a familiar environment.
As soon I put Aiden in the car seat, he perked up. He was so excited to go for a ride in the car. He kept looking over at me and smiling. He knew when we were home because he started making even more familiar sounds. He was happy to be home.
We go back to UCLA next Wednesday for a follow-up appointment and to get the staples removed. Dr. Mathern wants to see Aiden in one month, then again in six months. Otherwise, Aiden is ready to start his outpatient therapy.
Aiden is still pretty weak on his left side, but he was actually able to walk a little bit while I held him around his waist. He enjoyed his first real bath in a week. We've just been snuggling and relaxing since we got home. What an amazing boy!
Keep an eye out for a news broadcast on ABC Channel 7 tomorrow afternoon/evening. They are running a story on Aiden, Sturge-Weber Syndrome and his Hemispherectomy surgery. If you miss it on tv, don't worry. I will be able to post it on Aiden's website in a few days.
It's hard to believe but it's true. Aiden is home from the hospital!
Aiden has been doing so well, no fever, no infection, no complications whatsoever so everyone agreed it was time to send Aiden home to finish his recovery in a familiar environment.
As soon I put Aiden in the car seat, he perked up. He was so excited to go for a ride in the car. He kept looking over at me and smiling. He knew when we were home because he started making even more familiar sounds. He was happy to be home.
We go back to UCLA next Wednesday for a follow-up appointment and to get the staples removed. Dr. Mathern wants to see Aiden in one month, then again in six months. Otherwise, Aiden is ready to start his outpatient therapy.
Aiden is still pretty weak on his left side, but he was actually able to walk a little bit while I held him around his waist. He enjoyed his first real bath in a week. We've just been snuggling and relaxing since we got home. What an amazing boy!
Keep an eye out for a news broadcast on ABC Channel 7 tomorrow afternoon/evening. They are running a story on Aiden, Sturge-Weber Syndrome and his Hemispherectomy surgery. If you miss it on tv, don't worry. I will be able to post it on Aiden's website in a few days.
Wednesday, August 27, 2008
Post Op - Seventh Day
August 27, 2008
Today was a busy day for Aiden. Heather, Aiden's representative from Regional Center came to visit and see first hand how well he's doing. Regional Center helps Aiden obtain services and special equipment for his needs. Heather also donated blood at Aiden's blood drive a few weeks ago.
Dr. Mathern came in this morning around 10:00 AM and said that Aiden passed his clamp test and the drain would be taken out. Around 1:00 PM, a neurosurgery resident came in and removed the bandage and the drain. The incision looks better than I thought it would. It looks like it will heal very nicely. I counted 36 staples. At 3:30 PM, we took Aiden down for a CT scan to make sure everything looked okay after the drain had been out for a few hours. I posted pictures on the "photos" page on his website.
A doctor on the floor said the CT looked okay to her but Dr. Mathern would have to make the final call, so we won't know for sure until tomorrow.
Grandma Fran and John came by to visit in the evening. Since Aiden is not hooked up to anything but a pulse oximeter, we were able to hold him. It was heavenly!
Today was a busy day for Aiden. Heather, Aiden's representative from Regional Center came to visit and see first hand how well he's doing. Regional Center helps Aiden obtain services and special equipment for his needs. Heather also donated blood at Aiden's blood drive a few weeks ago.
Dr. Mathern came in this morning around 10:00 AM and said that Aiden passed his clamp test and the drain would be taken out. Around 1:00 PM, a neurosurgery resident came in and removed the bandage and the drain. The incision looks better than I thought it would. It looks like it will heal very nicely. I counted 36 staples. At 3:30 PM, we took Aiden down for a CT scan to make sure everything looked okay after the drain had been out for a few hours. I posted pictures on the "photos" page on his website.
A doctor on the floor said the CT looked okay to her but Dr. Mathern would have to make the final call, so we won't know for sure until tomorrow.
Grandma Fran and John came by to visit in the evening. Since Aiden is not hooked up to anything but a pulse oximeter, we were able to hold him. It was heavenly!
Tuesday, August 26, 2008
Post Op - Sixth Day
August 26, 2008
Aiden is regaining his strength. He sat up and held his head up on his own today. He is off IV fluids now as he has been drinking plenty on his own. He was given his last dose of Dilantin and steroids yesterday so all he is on now is the antibiotic. Poor guy had IVs coming out of everywhere. Now he's just got the dual port in his inner thigh for blood draws and morphine. Aiden experienced a lot of pain today so he has had 3 doses of morphine.
Dr. Mathern felt that Aiden's drain was ready to be test clamped as his brain fluid has been clear today and he was only draining out a very small amount. This likely means his left hemisphere is doing it's job and the drain might be taken out tomorrow morning if his intracranial pressure remains low through the night. If the left hemisphere can't absorb the brain fluid properly, they will have to put in an internal shunt that will run from his head to his stomach. The pressure has been low since they clamped the drain at 7:00 PM. Keeping my fingers crossed.
All the doctors and nurses are really impressed with Aiden's progress. It feels good to hear them say how amazingly he is recovering.
Aiden is regaining his strength. He sat up and held his head up on his own today. He is off IV fluids now as he has been drinking plenty on his own. He was given his last dose of Dilantin and steroids yesterday so all he is on now is the antibiotic. Poor guy had IVs coming out of everywhere. Now he's just got the dual port in his inner thigh for blood draws and morphine. Aiden experienced a lot of pain today so he has had 3 doses of morphine.
Dr. Mathern felt that Aiden's drain was ready to be test clamped as his brain fluid has been clear today and he was only draining out a very small amount. This likely means his left hemisphere is doing it's job and the drain might be taken out tomorrow morning if his intracranial pressure remains low through the night. If the left hemisphere can't absorb the brain fluid properly, they will have to put in an internal shunt that will run from his head to his stomach. The pressure has been low since they clamped the drain at 7:00 PM. Keeping my fingers crossed.
All the doctors and nurses are really impressed with Aiden's progress. It feels good to hear them say how amazingly he is recovering.
Monday, August 25, 2008
Post Op - Fifth Day
August 25, 2008
Today we had a visit from Sarah Swank. Her daughter, Hannah, was also born with Sturge-Weber Syndrome and underwent a hemispherectomy two years ago, also performed by Dr. Mathern. We connected through our support group back in January, 2008 when we were told Aiden might need a hemispherectomy. Sarah invited Aiden, Jason and I over to have dinner with her and her husband Mark, and their kids Hannah and Weston. We all shared our experiences with Sturge-Weber, they told us about their experience with Hannah's hemispherectomy and we were able to see first hand how a child with half a brain could function. Their family really helped us in the decision making process for Aiden.
Aiden continues to heal but the drain is still not ready to come out. So, we just continue to patiently wait here in the PICU.
A little bonus today was James Van Der Beek (from Dawson's Creek) and his wife Heather McComb brought toys to all the kids in the PICU. They took the time to pose with Aiden in a picture! They were both very kind.
Today we had a visit from Sarah Swank. Her daughter, Hannah, was also born with Sturge-Weber Syndrome and underwent a hemispherectomy two years ago, also performed by Dr. Mathern. We connected through our support group back in January, 2008 when we were told Aiden might need a hemispherectomy. Sarah invited Aiden, Jason and I over to have dinner with her and her husband Mark, and their kids Hannah and Weston. We all shared our experiences with Sturge-Weber, they told us about their experience with Hannah's hemispherectomy and we were able to see first hand how a child with half a brain could function. Their family really helped us in the decision making process for Aiden.
Aiden continues to heal but the drain is still not ready to come out. So, we just continue to patiently wait here in the PICU.
A little bonus today was James Van Der Beek (from Dawson's Creek) and his wife Heather McComb brought toys to all the kids in the PICU. They took the time to pose with Aiden in a picture! They were both very kind.
Sunday, August 24, 2008
Post Op - Fourth Day
August 24, 2008
Aiden's dad, Brian, left early this morning to head back to Indiana. He was very sad to leave Aiden. Grandpa Ray came in today from Virginia to be with us and help out at the hospital.
The swelling in Aiden's head has gone down and he looks like he normally does, minus the bandage around his head. We are still in ICU because the fluid that is draining from Aiden's head is still red and needs to run clear before they can do a test clamp on the drain. They do a test clamp to make sure Aiden's remaining left hemisphere can absorb the brain fluid properly. Once that is established, they will decide to either leave the drain in longer or take it out. Once the drain is removed, then the bandage can be removed and then we would soon be moved to a less critical room. I'm not sure how long it will take for the fluid to run clear but they estimate a few more days.
Aiden was in quite a bit more discomfort today but he is eating and drinking well and his "pipes" are working. No infections or fevers, although we were told he'd get a fever around day 6. That is typical. All of his labs come back normal everyday, so that is great news. We are just taking our time and making sure Aiden heals properly. Everyone here at UCLA is taking such good care of him.
Aiden's dad, Brian, left early this morning to head back to Indiana. He was very sad to leave Aiden. Grandpa Ray came in today from Virginia to be with us and help out at the hospital.
The swelling in Aiden's head has gone down and he looks like he normally does, minus the bandage around his head. We are still in ICU because the fluid that is draining from Aiden's head is still red and needs to run clear before they can do a test clamp on the drain. They do a test clamp to make sure Aiden's remaining left hemisphere can absorb the brain fluid properly. Once that is established, they will decide to either leave the drain in longer or take it out. Once the drain is removed, then the bandage can be removed and then we would soon be moved to a less critical room. I'm not sure how long it will take for the fluid to run clear but they estimate a few more days.
Aiden was in quite a bit more discomfort today but he is eating and drinking well and his "pipes" are working. No infections or fevers, although we were told he'd get a fever around day 6. That is typical. All of his labs come back normal everyday, so that is great news. We are just taking our time and making sure Aiden heals properly. Everyone here at UCLA is taking such good care of him.
Saturday, August 23, 2008
Post Op - Second Day & Third Day
August 23, 2008
Yesterday, we were told that Aiden needed to start taking his regular oral seizure medication, Topamax, so they could take him off the IV drug, Dilantin. I was a little worried about how Aiden would handle eating and swallowing because we have to mix Topamax with a little pureed fruit. Well, he did great. He opened his mouth for the spoon and closed his lips around the spoon with no problem! Then Dr. Mathern came to check on Aiden and was very pleased to hear his progress report and ordered me to go home. So, I went home to get some sleep and Brian, Aiden's dad, stayed with him through the night. I got eleven hours of sleep last night and that's the best rest I've gotten in months.
Brian called me this morning and said Aiden has been doing "better than great". He's been moving his left arm,, saying "da da da da da-da" and humming "twinkle twinkle"!!!! It's like nothing has changed, which is good because things will only get better from here.
Brian said they did have to give Aiden some morphine in the middle of the night, but we were told by Dr. Mathern the pain would start to set in around day 2, so we expected that.
All in all, we couldn't have hoped for a better outcome. We are all so thankful. Jason and I are on our way to the hospital now. I can't wait to see Aiden.
Stay tuned. More to come...
Yesterday, we were told that Aiden needed to start taking his regular oral seizure medication, Topamax, so they could take him off the IV drug, Dilantin. I was a little worried about how Aiden would handle eating and swallowing because we have to mix Topamax with a little pureed fruit. Well, he did great. He opened his mouth for the spoon and closed his lips around the spoon with no problem! Then Dr. Mathern came to check on Aiden and was very pleased to hear his progress report and ordered me to go home. So, I went home to get some sleep and Brian, Aiden's dad, stayed with him through the night. I got eleven hours of sleep last night and that's the best rest I've gotten in months.
Brian called me this morning and said Aiden has been doing "better than great". He's been moving his left arm,, saying "da da da da da-da" and humming "twinkle twinkle"!!!! It's like nothing has changed, which is good because things will only get better from here.
Brian said they did have to give Aiden some morphine in the middle of the night, but we were told by Dr. Mathern the pain would start to set in around day 2, so we expected that.
All in all, we couldn't have hoped for a better outcome. We are all so thankful. Jason and I are on our way to the hospital now. I can't wait to see Aiden.
Stay tuned. More to come...
Friday, August 22, 2008
A special "Thank You"
Being anxious all day and then excited about Aiden's post-op status, I neglected to thank everyone who made the day go much easier than it would have with out them. First of all, thanks to my mom, John, Dawn and Matt for being there at the hospital with us all day yesterday. Brian, Jason and I don't know what we'd have done without your support. Second, we want to thank everyone who called, texted, emailed and signed the guestbook. During that looooong waiting period, your words were extremely comforting. Next, we want to thank the kids and their teachers at the church in Tennessee for making the cards for Aiden and emailing us pictures. Check them out on the "photos" link on this website. Most importantly, thank you Dr. Mathern for doing such an amazing job with Aiden's surgery. Your skilled hands and mind have put us all in awe.
Post Op - First Morning
August 22, 2008Getting to see Aiden took a while longer than expected. We were finally allowed to go to the PICU around 10:00 PM last night. Aiden was awake and in discomfort. He would open his eyes and look around at all of us and we were told he had been moving both legs and right hand and arm which is fantastic. There is little to no movement in the left hand and arm, which we expected. With time that will get better.
Throughout the night and morning, Aiden only woke up and a few times and complained a little but not too much. I would hold his hand and hum softly to him and he would quickly drift off to sleep. The nurse said Aiden hasn't needed any pain medication and they don't plan on giving him any unless his vitals show he needs it and/or he seems to be in a lot of pain. In fact, the only drip Aiden is on is fluids, no meds. His breathing, blood pressure and sodium levels are all stable. That is such a relief since we were told when Aiden came out of surgery, he'd probably still be intubated, on a ventilator and heavily sedated. But he proved that theory wrong. He is so amazingly strong!
Also, early this morning, I was sitting next to him and I saw his eyes open so I started talking to him and stroking his hand and he smiled at me. What I noticed is that he had a full smile, meaning both sides of his face are functioning. I've heard of kids coming out of surgery with a half smile, temporarily.
We have so much to be thankful for. I am just amazed at him, as always.
Thursday, August 21, 2008
Surgery - Finished
6:35 PM
Let out a big sigh of relief because the surgery is done! We all just did! Aiden just underwent an eleven hour operation.
Dr. Mathern just finished talking with us and he said, in a nutshell, everything went very well and we should be able to see him in about an hour.
He also said that the right side of Aiden's brain was COMPLETELY affected by Sturge-Weber and that everything needed to come out. When they attached the electrodes to the surface of his brain, there was NO activity at all.
Amazingly, Aiden will be awake and alert enough to interact with us a little. Dr. Mathern told us what to expect over the next few days and not to "sweat the small stuff". Overall he was very pleased with the surgery.
Thank each and every one of you for your positive thoughts and prayers.
Let out a big sigh of relief because the surgery is done! We all just did! Aiden just underwent an eleven hour operation.
Dr. Mathern just finished talking with us and he said, in a nutshell, everything went very well and we should be able to see him in about an hour.
He also said that the right side of Aiden's brain was COMPLETELY affected by Sturge-Weber and that everything needed to come out. When they attached the electrodes to the surface of his brain, there was NO activity at all.
Amazingly, Aiden will be awake and alert enough to interact with us a little. Dr. Mathern told us what to expect over the next few days and not to "sweat the small stuff". Overall he was very pleased with the surgery.
Thank each and every one of you for your positive thoughts and prayers.
Surgery - Fourth Update
6:00 PM
Just got a call from the O.R. nurse. They are closing him up and the neurosurgeon, Dr. Mathern will be down to talk to us in about 30 minutes. They say Aiden did well.
Just got a call from the O.R. nurse. They are closing him up and the neurosurgeon, Dr. Mathern will be down to talk to us in about 30 minutes. They say Aiden did well.
Surgery - Third Update
5:00 PM
Just got a call from the O.R. nurse. Everything is going well. They have removed a large portion of the right hemisphere. What remains of the right side is under the microscope and they will decide what else needs to be removed, if anything and then close him up. They expect a few more hours.
Just got a call from the O.R. nurse. Everything is going well. They have removed a large portion of the right hemisphere. What remains of the right side is under the microscope and they will decide what else needs to be removed, if anything and then close him up. They expect a few more hours.
Surgery - Second Update
12:44 PM
We just got word from an epileptologist working with the neurosurgeon that everything is going well and the extraction is about to begin.
We just got word from an epileptologist working with the neurosurgeon that everything is going well and the extraction is about to begin.
Surgery - First Update
12:30 PM
Our sweet Aiden is in the operating room right now. We got our first update out of the O.R. two hours ago letting us know the surgery had begun. The nurse said she will call with another update in about an hour.
Our sweet Aiden is in the operating room right now. We got our first update out of the O.R. two hours ago letting us know the surgery had begun. The nurse said she will call with another update in about an hour.
Wednesday, August 20, 2008
Hospital Admission
August 20, 2008
We are getting ready to go to UCLA Medical Center to check Aiden in and get him ready for his surgery tomorrow. He will be taken to the pre-op area around 6:00 AM. Surgery is scheduled to begin at 7:30 AM and last approximately 10 hours.
I will post updates as I hear from the operating room.
Please keep Aiden in your thoughts and prayers.
We are getting ready to go to UCLA Medical Center to check Aiden in and get him ready for his surgery tomorrow. He will be taken to the pre-op area around 6:00 AM. Surgery is scheduled to begin at 7:30 AM and last approximately 10 hours.
I will post updates as I hear from the operating room.
Please keep Aiden in your thoughts and prayers.
Tuesday, August 12, 2008
Seizures
August 12, 2008
Aiden had a few seizures this morning. The first and second ones were brief so I didn't administer Diastat but once the third one started, I gave it to him and they stopped. He slept for about 2 hours after that and has been fine the rest of the day. I hope with all my heart that this surgery makes them stop for good.
Aiden had a few seizures this morning. The first and second ones were brief so I didn't administer Diastat but once the third one started, I gave it to him and they stopped. He slept for about 2 hours after that and has been fine the rest of the day. I hope with all my heart that this surgery makes them stop for good.
Saturday, August 9, 2008
Blood Drive
August 9, 2008
Aiden's blood drive this Saturday was a huge success. 58 people showed up to donate blood and I was told that was enough for Aiden's surgery and to save an additional 8 lives!
Our family and friends, cadets at the Rio Hondo Police Academy and people who saw Aiden's article in the newspaper, thank you so much for taking the time to come out and donate blood. It was a pleasure seeing you all.
Click here to see the news coverage on the blood drive http://www.youtube.com/watch?v=nGtdENMUFCU
Aiden's blood drive this Saturday was a huge success. 58 people showed up to donate blood and I was told that was enough for Aiden's surgery and to save an additional 8 lives!
Our family and friends, cadets at the Rio Hondo Police Academy and people who saw Aiden's article in the newspaper, thank you so much for taking the time to come out and donate blood. It was a pleasure seeing you all.
Click here to see the news coverage on the blood drive http://www.youtube.com/watch?v=nGtdENMUFCU
Tuesday, August 5, 2008
Date Set for Surgery
August 5, 2008
We got word from Dr. Comi's office in Baltimore and she and Dr. Kossoff both feel the hemispherectomy is necessary. So, we scheduled the surgery for August 21st. We will be admitted the day before to UCLA Medical Center .
This Saturday, August 9th, UCLA will be holding a blood drive in our city to collect blood from donors for Aiden's surgery and for other patients at UCLA.
Our local newspaper in Southern California did an article on Aiden, Sturge-Weber and his up-coming surgery. The story came out in today's paper (SGV Tribune, Highlander, Weekly Star, Pasadena Star and Whittier Daily News).
We got word from Dr. Comi's office in Baltimore and she and Dr. Kossoff both feel the hemispherectomy is necessary. So, we scheduled the surgery for August 21st. We will be admitted the day before to UCLA Medical Center .
This Saturday, August 9th, UCLA will be holding a blood drive in our city to collect blood from donors for Aiden's surgery and for other patients at UCLA.
Our local newspaper in Southern California did an article on Aiden, Sturge-Weber and his up-coming surgery. The story came out in today's paper (SGV Tribune, Highlander, Weekly Star, Pasadena Star and Whittier Daily News).
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