I forgot to mention that we had to cut off Jackson's signature trademark, his curly top knot. Here is a recent picture of how long it was and me cutting it before surgery.
Friday, October 3, 2008
First Haircut
I forgot to mention that we had to cut off Jackson's signature trademark, his curly top knot. Here is a recent picture of how long it was and me cutting it before surgery.
The Big Day is here and final surgery has began
They took Jackson back a little later than expected this morning. He just went down to the operating room at 8:45 am. The first incision will again be like last time around 9:30 am. This surgery will last a good 7 hours! Such a long time, but they will keep us posted every hour and I will try to keep everyone updated.
Again, they will go and take out the entire parietal and temporal regions, and then monitor his activity. So we will pray that is all that is needed, but they may have to resect some more. I am so glad they are looking at things conservatively in phases. This surgeon is really meticulous and you can tell just how caring he is about his patients. He really has a good bedside manner for a surgeon, which we are so happy because we were not able to meet him until recently. We always just worked through Dr. Chugani.
They will have to give Jackson a blood transfusion when he gets in. He has lost a lot between the two surgeries and he will lose more when they start.
He was so peaceful this morning. They did not have to give him that much sedation through the night, so it seemed he was feeling better. He did open his eyes for us before he went back.
Thank you all for praying for him during this long surgery and this final road to recovery! We are so grateful!
Love, meghan and tony
Again, they will go and take out the entire parietal and temporal regions, and then monitor his activity. So we will pray that is all that is needed, but they may have to resect some more. I am so glad they are looking at things conservatively in phases. This surgeon is really meticulous and you can tell just how caring he is about his patients. He really has a good bedside manner for a surgeon, which we are so happy because we were not able to meet him until recently. We always just worked through Dr. Chugani.
They will have to give Jackson a blood transfusion when he gets in. He has lost a lot between the two surgeries and he will lose more when they start.
He was so peaceful this morning. They did not have to give him that much sedation through the night, so it seemed he was feeling better. He did open his eyes for us before he went back.
Thank you all for praying for him during this long surgery and this final road to recovery! We are so grateful!
Love, meghan and tony
Thursday, October 2, 2008
2nd Surgery - Friday 8:00 am
Just wanted to let everyone know that Jackson's surgery will begin at 8:00 am eastern time. The data is back and they will resect portions of his right temporal and parietal lobes, which is located behind the motor cortex. He will still be hooked up to all the grids during the surgery, so once they remove this section they will look to see if the abnormal activity has tapered off and if so then that will be all they resect. If not, then they might have to do a little more but they will let us know throughout the surgery.
We continue to hold to our faith that he will be our same sweet baby boy with a whole new look on life after surgery. We can't wait for seizure free days! Thank you for lifting him up and keeping prayers coming his way.
We continue to hold to our faith that he will be our same sweet baby boy with a whole new look on life after surgery. We can't wait for seizure free days! Thank you for lifting him up and keeping prayers coming his way.
God is Good
We received our first Miracle! Dr. Chugani came in this afternoon to the ICU and told us that what Jackson experienced last night was NOT SEIZURES! Our prayers were answered!!! I wish someone could have told us that last night...that is the frustrating part because it was such a nightmare. However, today we are ever so grateful!
Dr. Chugani thought the Dilaudid caused an agitating reaction, along with the motor mapping he had earlier in the day. He said Dilaudid can be very potent and can cause hallucinations. Plus they had many other drugs in his system. These "episodes" began 20 - 30 minutes after receiving the drug. Jackson just woke up gasping for air and his oxygen levels went low. The next thing we knew an entire team was around him and said he was having an acute seizure. It was hard for me to tell what he was doing exactly, because his hands were tied to the bed rail. He just seemed to be moving in every direction. They finally got his oxygen levels back up and stabilized. Then he had another breathing "episode" and another. This lasted for about an hour. We were just beside ourselves, wondering how we could have done this to our baby!
The rest of the night he looked miserable. Completely out of it and thrashing around. He never rested. Around 4:30 am they decided to intibate him to allow more sedation and testing. The sedation was effecting his breathing on his own. They also did a CAT scan to make sure there was nothing unusual detected with his brain. Everything ended up coming back normal on the scan.
All we were praying for was to have our son back! It was heartbreaking to not know what is causing him to be in so much pain. They even had a Chaplin stay in the room with us (which honestly scared me when he showed up at his bedside) , but he stayed with Jack when he was transferred back to ICU and kept us informed. It was really nice to have someone praying over Jackson the whole time.
We are just so happy that those were not new seizures he was experiencing. We just wish they could have had the Doctors during the night to read the EEG to tell us for sure.
He is resting now in the ICU. They will keep him hooked up to the ventilator until after the surgery tomorrow, even though he is breathing on his own. He has opened his eyes a few times, but mostly sleeping finally! I know we have mentioned before that Jackson is a strong boy, but we just didn't realize the amount of strength within that little body until witnessing what all he went through last night.
Again, we can't thank you enough for all your prayers, and we know God answered them for us last night. We trust that He will answer our prayers for seizure freedom after tomorrow.
Dr. Chugani thought the Dilaudid caused an agitating reaction, along with the motor mapping he had earlier in the day. He said Dilaudid can be very potent and can cause hallucinations. Plus they had many other drugs in his system. These "episodes" began 20 - 30 minutes after receiving the drug. Jackson just woke up gasping for air and his oxygen levels went low. The next thing we knew an entire team was around him and said he was having an acute seizure. It was hard for me to tell what he was doing exactly, because his hands were tied to the bed rail. He just seemed to be moving in every direction. They finally got his oxygen levels back up and stabilized. Then he had another breathing "episode" and another. This lasted for about an hour. We were just beside ourselves, wondering how we could have done this to our baby!
The rest of the night he looked miserable. Completely out of it and thrashing around. He never rested. Around 4:30 am they decided to intibate him to allow more sedation and testing. The sedation was effecting his breathing on his own. They also did a CAT scan to make sure there was nothing unusual detected with his brain. Everything ended up coming back normal on the scan.
All we were praying for was to have our son back! It was heartbreaking to not know what is causing him to be in so much pain. They even had a Chaplin stay in the room with us (which honestly scared me when he showed up at his bedside) , but he stayed with Jack when he was transferred back to ICU and kept us informed. It was really nice to have someone praying over Jackson the whole time.
We are just so happy that those were not new seizures he was experiencing. We just wish they could have had the Doctors during the night to read the EEG to tell us for sure.
He is resting now in the ICU. They will keep him hooked up to the ventilator until after the surgery tomorrow, even though he is breathing on his own. He has opened his eyes a few times, but mostly sleeping finally! I know we have mentioned before that Jackson is a strong boy, but we just didn't realize the amount of strength within that little body until witnessing what all he went through last night.
Again, we can't thank you enough for all your prayers, and we know God answered them for us last night. We trust that He will answer our prayers for seizure freedom after tomorrow.
More Prayers Needed
This is Maggie, Meghan's sister writing this entry...the last 24 hours have been really, really difficult for Jackson, Meghan, and Tony. I will try to keep it as brief as possible, but will explain a little of what occurred yesterday evening and early this morning. Jackson was having some break-through pain yesterday and the Morphine made him itchy. So, they tried another pain drug on him last night (I think it was Dilaudid). After receiving the drug, Jackson began having grand mal seizures (which he had never had before). He had about 3 seizures spread a few minutes apart and then the seizures became constant. It took a long time for them to get the grand mal seizures under control with medication. After they finally got the seizures under control, Jackson was very agitated and he pulled out 2 IVs. The medical team felt it was in Jack's best interest to intubate him and keep him more sedated. The doctor met with Meghan and Tony this morning and said they plan to keep Jack intubated/sedated until his surgery tomorrow. The doctor had Meghan and Tony leave and go get some rest. They said they did not want Jack stimulated today and wanted him to rest. I know Meghan and Tony were very reluctant to leave but are also utterly exhausted. Meghan called and asked me to post this entry and to please ask for prayers today....to pray that Jack will be stable, calm, and relieved of pain. Meghan and Tony are supposed to be back at 1:00 to meet with the doctors. Please, please pray for Meghan and Tony too as there bodies are so weary.....pray that they also get rest and peace today. Our family sincerely appreciates everyone's thoughts and prayers.
- Maggie
- Maggie
Wednesday, October 1, 2008
Another request please...
Jackson is in so much pain...it is just unbearable to watch. The morphine is just not working, and really making it worse with the an irritating reaction. We are now waiting on the Pain management team to approve another drug. In the meantime, please pray for the pain to diminish and that he may rest peacefully. He has had a rough go of this first round. We just want him comfortable as possible.
Update on Day 2 after 1st Surgery - 7:30 pm
We are now out of ICU and in the Video Monitoring room until Friday. Jackson made it to this room about 1 pm. He was still sick this morning and not able to keep anything down. They have kept him feeling pretty good all day with meds and sedatation. He is also real itchy around his nose and forehead from the turban mesh, swelling and the morphine.
The EEG team came at 1 o'clock to do another Motor Mapping part of the diagnostics for surgery. They hooked up machines that sent electrical currents to the grids located on his brain. In response, they look for movement of that particular area of the body that they are targeting. The purpose of finding the motor cortex is so that during surgery they know what functions they are working around as they do not want to give Jackson a deficit. It sounds really awful to send electrical currents to your child, but they said there is no sensitivity in the lining of the brain. He actually slept through the whole process. Once they send the signal, if it is connected to a motor function then that part of the body will move, such as the hand, leg, throat, mouth, etc. Nothing moved on Jackson, so the test did not work on him. However, they said in babies that are 1 to 2 years of age, it is very common to not get results on this particular test because they are so young. If the children are older, they always get results.
As far as detecting the motor cortex, they did another anaylsis yesterday when he was in recovery. They are sure of the motor area now, but this test today was just another way of double checking.
After he was settled, I went to nap from 2 - 5 and showered! That is why I am late on updating the blog.
This evening Jackson is still a little fussy, but does have some of his spunk coming out. He has kept juice down and seems to be feeling better with his nausea. He started talking again to his Daddy and making little sounds. He is still in pain and we are trying to find something else beside the morphine to help him. It makes him really want to itch and grab.
We are staying positive and have full faith in God and this team that Jackson will pull through this with flying colors! He is such a trooper!
Tomorrow morning is when they will give us the results of all the data they have collected. We will discuss the areas of removal with the entire team and will have a good idea about Friday's surgery by tomorrow afternoon. Please pray that they have gathered all the data they need, and their findings will benefit Jackson to complete recovery! We are expecting miracles...and nothing less!
We cannot thank you enough for all your support. Your prayers are helping him so much!!
The EEG team came at 1 o'clock to do another Motor Mapping part of the diagnostics for surgery. They hooked up machines that sent electrical currents to the grids located on his brain. In response, they look for movement of that particular area of the body that they are targeting. The purpose of finding the motor cortex is so that during surgery they know what functions they are working around as they do not want to give Jackson a deficit. It sounds really awful to send electrical currents to your child, but they said there is no sensitivity in the lining of the brain. He actually slept through the whole process. Once they send the signal, if it is connected to a motor function then that part of the body will move, such as the hand, leg, throat, mouth, etc. Nothing moved on Jackson, so the test did not work on him. However, they said in babies that are 1 to 2 years of age, it is very common to not get results on this particular test because they are so young. If the children are older, they always get results.
As far as detecting the motor cortex, they did another anaylsis yesterday when he was in recovery. They are sure of the motor area now, but this test today was just another way of double checking.
After he was settled, I went to nap from 2 - 5 and showered! That is why I am late on updating the blog.
This evening Jackson is still a little fussy, but does have some of his spunk coming out. He has kept juice down and seems to be feeling better with his nausea. He started talking again to his Daddy and making little sounds. He is still in pain and we are trying to find something else beside the morphine to help him. It makes him really want to itch and grab.
We are staying positive and have full faith in God and this team that Jackson will pull through this with flying colors! He is such a trooper!
Tomorrow morning is when they will give us the results of all the data they have collected. We will discuss the areas of removal with the entire team and will have a good idea about Friday's surgery by tomorrow afternoon. Please pray that they have gathered all the data they need, and their findings will benefit Jackson to complete recovery! We are expecting miracles...and nothing less!
We cannot thank you enough for all your support. Your prayers are helping him so much!!
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