After a nice Christmas Concert at Cook Children's Medical Center with Randy Travis, Charlie Pride, and some other Country stars, Jessie was released and is now home.
Pictures below, including one with Jessie and Randy Travis.
http://www.star-telegram.com/2010/12/22/2723369/country-singers-entertain-patients.html
So, Jessie is beginning to feel much better and we feel blessed to have her home. On the down side, she has had 3 seizures since surgery. That really bites. It is too early to call the surgery unsuccessful. We'll give it a few months, and give her brain time to heal from the trauma of brain surgery, and then we will know for sure.
No need to speculate until then. One Day at a time and Thanks to God ! Thanks to you all for your prayers, emails, Facebookings, Texts, Calls, Gifts, Visits. We Love You.
Blessings to all for a Merry Christmas. Cris
Wednesday, December 22, 2010
Monday, December 20, 2010
Things are Looking Up!
Hi All,
It looks like we have turned the corner on Jessies' Redo surgery. Tomorrow will be day 6, and she is turning the corner and beginning to feel pretty good again. She still has a few more days in the hospital, I'm certain, and the swelling is still pretty bad, but we are seeing smiles again.
For those of you who are not aware, 5 days ago, Jessie underwent a redo hemispherectomy surgery to battle returning seizures from her original Hemispherectomy in 2008 for Rasmussen's. Her original surgery was at Johns Hopkins by Dr. Ben Carson, and the Redo was performed at Cook Children's in Fort Worth, Texas by Dr. David Donahue.
Even though her original hemispherectomy was anatomical, there was some tissue and connections that were remaining and seizing. Dr. Donahue retraced a complete Corpus Collosotomy and disconnected some other tissue in the frontal lobe that was remaining.
I can't tell you if this surgery was successful yet, and really shouldn't try for months...and even then, it will be an optimistic guess. All of you know who have Hemi Kids know what I mean.
Jessie had a really rough time over the past few days, but is now starting to "turn the corner", and finally ate today and even held it down. She has been plagued with nausea, headaches, and lethargy since surgery, most likely from Chemical Meningitis. This is fairly common for these type of surgeries.
I continue to update regularly on Facebook.
Thanks for all of your support. I think that Jessie will be home for Christmas...hopefully seizure free for good.
Kind Regards,
Cris and Kristi Hall
To Learn More about Hemispherectomy, see http://www.HemiFoundation.org
It looks like we have turned the corner on Jessies' Redo surgery. Tomorrow will be day 6, and she is turning the corner and beginning to feel pretty good again. She still has a few more days in the hospital, I'm certain, and the swelling is still pretty bad, but we are seeing smiles again.
For those of you who are not aware, 5 days ago, Jessie underwent a redo hemispherectomy surgery to battle returning seizures from her original Hemispherectomy in 2008 for Rasmussen's. Her original surgery was at Johns Hopkins by Dr. Ben Carson, and the Redo was performed at Cook Children's in Fort Worth, Texas by Dr. David Donahue.
Even though her original hemispherectomy was anatomical, there was some tissue and connections that were remaining and seizing. Dr. Donahue retraced a complete Corpus Collosotomy and disconnected some other tissue in the frontal lobe that was remaining.
I can't tell you if this surgery was successful yet, and really shouldn't try for months...and even then, it will be an optimistic guess. All of you know who have Hemi Kids know what I mean.
Jessie had a really rough time over the past few days, but is now starting to "turn the corner", and finally ate today and even held it down. She has been plagued with nausea, headaches, and lethargy since surgery, most likely from Chemical Meningitis. This is fairly common for these type of surgeries.
I continue to update regularly on Facebook.
Thanks for all of your support. I think that Jessie will be home for Christmas...hopefully seizure free for good.
Kind Regards,
Cris and Kristi Hall
To Learn More about Hemispherectomy, see http://www.HemiFoundation.org
Saturday, December 18, 2010
Post Surgical Trials
Quick Update on Jessie. I am mostly doing my updates on Facebook now, so if you are looking for more up-to-date status, please send a Friend Request to Cris Hall.
Jessie had 104.2 fever earlier. This sounds bad, but after brain surgery, this does not indicate a bacterial infection like it would in you or I. Basically, the spinal fluid has so much debris in it, the body goes into an immune response with fever. Hopefully over the next few days, this will get better.
She is still unable to hold food down, and is mostly lethargic, not drinking or eating.
She is out of PICU, and we are in a private room, which is nice. Kristi’s mom and dad are here now, and that made Jessie smile this morning. She has not had any more seizures, since the one immediately post surgery. Hopefully, that was just due to post-surgical irritation.
Thanks for all of your prayers.
Kind Blessings to all of you.
Cris and Kristi
http://www.HemiFoundation.org
Jessie had 104.2 fever earlier. This sounds bad, but after brain surgery, this does not indicate a bacterial infection like it would in you or I. Basically, the spinal fluid has so much debris in it, the body goes into an immune response with fever. Hopefully over the next few days, this will get better.
She is still unable to hold food down, and is mostly lethargic, not drinking or eating.
She is out of PICU, and we are in a private room, which is nice. Kristi’s mom and dad are here now, and that made Jessie smile this morning. She has not had any more seizures, since the one immediately post surgery. Hopefully, that was just due to post-surgical irritation.
Thanks for all of your prayers.
Kind Blessings to all of you.
Cris and Kristi
http://www.HemiFoundation.org
Wednesday, December 15, 2010
Surgery Tomorrow
Today, we will be at Cook Children’s Medical Center for Pre-Op, Registration, and all the other pre-operative stuff that you have to do. Jessie’s surgery will be Thursday (tomorrow). I will try to keep everyone updated, probably on Facebook, as that seems to be the most used media these days.
The increase in Tegretol has kept Jessie’s seizure to only a couple a day, and not very intense, so she has been able to continue in school this week. Her seizures look something like a combination of a complex partial, and simple partial seizure, beginning with a tummy ache, then staring, and some twitching in her right eye. They are mild, but they continue to break through the Tegretol dose. It is just a matter of time til we would be back in the ER like last week.
The saddest part, is that yet another year, she misses her class Christmas Party. This is pretty important to a 2nd grader, but she hasn’t complained one time. Kristi and I were looking at our vacation spent this year, and over ½ was spent for hospital time. Really, this has been a harder year for Jessie than her 1st complete year after surgery. We pray that this will be the last one.
So, Dr. Donahue will be going after some tissue and connections that are firing up on the SPECT Scan when Jessie is seizing. It is small amounts of tissue and two connections that need to be severed. Unfortunately, It is full-open, brain surgery just like her 2008 Hemispherectomy. Fortunately, recovery shouldn’t be as long as the first surgery. If all goes well, her stay at Cooks shouldn’t be over a week….God willing less.
On the bright side of things, if Jessie feels well, Christmas time at Cook Children’s is magical. They really spoil the kiddos there all the time, but Christmas is over the top.
Kristi and I once again ask for your prayers. It seems like every time we turn around, we are asking everyone to pray for Jessie. We are not too proud to keep asking, so please pray for Jessie and her doctors and for a quick recovery.
Blessings,
Cris and Kristi Hall
The increase in Tegretol has kept Jessie’s seizure to only a couple a day, and not very intense, so she has been able to continue in school this week. Her seizures look something like a combination of a complex partial, and simple partial seizure, beginning with a tummy ache, then staring, and some twitching in her right eye. They are mild, but they continue to break through the Tegretol dose. It is just a matter of time til we would be back in the ER like last week.
The saddest part, is that yet another year, she misses her class Christmas Party. This is pretty important to a 2nd grader, but she hasn’t complained one time. Kristi and I were looking at our vacation spent this year, and over ½ was spent for hospital time. Really, this has been a harder year for Jessie than her 1st complete year after surgery. We pray that this will be the last one.
So, Dr. Donahue will be going after some tissue and connections that are firing up on the SPECT Scan when Jessie is seizing. It is small amounts of tissue and two connections that need to be severed. Unfortunately, It is full-open, brain surgery just like her 2008 Hemispherectomy. Fortunately, recovery shouldn’t be as long as the first surgery. If all goes well, her stay at Cooks shouldn’t be over a week….God willing less.
On the bright side of things, if Jessie feels well, Christmas time at Cook Children’s is magical. They really spoil the kiddos there all the time, but Christmas is over the top.
Kristi and I once again ask for your prayers. It seems like every time we turn around, we are asking everyone to pray for Jessie. We are not too proud to keep asking, so please pray for Jessie and her doctors and for a quick recovery.
Blessings,
Cris and Kristi Hall
Thursday, December 9, 2010
A Little Bit of Christmas Fun!
12/09/2010Amongst all the craziness that seizures bring to our life, Jessie and I were able to go with her Brownie troop to see the play Rudolph at Casa Manana last Saturday. Jessie and her troop dressed up to attend the play, take tickets, and pass out play bills. The girls (and their moms!) had a great time! I took this picture before we left for the play . . . Jessie looks so grown up! No one knew that we were hiding 29 staples from her scar revision and EEG glue with that cute hat!
Tuesday, December 7, 2010
Jessie's Surgery Date Set
Surgery Date Set
It’s been almost 3 and ½ years since we traveled to Johns Hopkins for Jessie’s initial brain surgery. Any time a hemispherectomy is performed; there is a chance that seizures will return, although they are usually less frequent and less severe than before surgery. We have watched many families go through a second surgery, and have always hoped that this wouldn’t happen to Jessie.
But here we are…..
I have said this many times, and I continue to emphasize it. We are blessed. There are many families, who we have met, that have no options of treatment, no hope for a brighter future. As hard as it may be to believe, we are the lucky ones. We have options and we have hope that Jessie can lead a life free of seizures.
This is what this second surgery is all about. It is about giving her that chance. Watching what the seizures did to her last week in the hospital made it an easy decision. Starting to carry Diastat (Seizure Rescue Medication) again, and increasing her seizure medication just brought back all of the old memories, but this time the decision was easy. Brain surgery is not the only option. We could try increased doses of seizure medication, and that might work, or maybe not. Brain surgery might not even work, but if it does, she can be free of the seizures and medications of epilepsy.
There are no guarantees with brain surgery, and the risks are real and present. On the positive side, however, and if all goes well, her hospital stay shouldn’t be nearly as long as after her hemispherectomy. Also, she shouldn’t lose any function that she currently has, which means no in-patient rehab on the 6th Floor at Cooks.
So, Surgery is scheduled for Thursday, Dec. 16th at Cook Children’s Medical Center. Dr. David Donahue will be doing the surgery. We are confident that he can do the job, as he has considerable hemispherectomy experience. This means that we will not be traveling to Johns Hopkins for this surgery. Dr. Donahue has been taking care of Jessie with shunt surgery and revisions, and we are confident that he can do a fine job on this surgery.
Thanks to all of you for your prayers and gifts for Jessie. Please keep the prayers up. We respectfully ask that in place of gifts, you send a card or make a donation in Jessie’s honor to one of the following organizations.
The Hemispherectomy Foundation http://www.HemiFoundation.org
The RE Children’s Project http://www.rechildrens.org
Citizens United for Research in Epilepsy http://www.cureepilepsy.org
Blessings to All,
Cris
It’s been almost 3 and ½ years since we traveled to Johns Hopkins for Jessie’s initial brain surgery. Any time a hemispherectomy is performed; there is a chance that seizures will return, although they are usually less frequent and less severe than before surgery. We have watched many families go through a second surgery, and have always hoped that this wouldn’t happen to Jessie.
But here we are…..
I have said this many times, and I continue to emphasize it. We are blessed. There are many families, who we have met, that have no options of treatment, no hope for a brighter future. As hard as it may be to believe, we are the lucky ones. We have options and we have hope that Jessie can lead a life free of seizures.
This is what this second surgery is all about. It is about giving her that chance. Watching what the seizures did to her last week in the hospital made it an easy decision. Starting to carry Diastat (Seizure Rescue Medication) again, and increasing her seizure medication just brought back all of the old memories, but this time the decision was easy. Brain surgery is not the only option. We could try increased doses of seizure medication, and that might work, or maybe not. Brain surgery might not even work, but if it does, she can be free of the seizures and medications of epilepsy.
There are no guarantees with brain surgery, and the risks are real and present. On the positive side, however, and if all goes well, her hospital stay shouldn’t be nearly as long as after her hemispherectomy. Also, she shouldn’t lose any function that she currently has, which means no in-patient rehab on the 6th Floor at Cooks.
So, Surgery is scheduled for Thursday, Dec. 16th at Cook Children’s Medical Center. Dr. David Donahue will be doing the surgery. We are confident that he can do the job, as he has considerable hemispherectomy experience. This means that we will not be traveling to Johns Hopkins for this surgery. Dr. Donahue has been taking care of Jessie with shunt surgery and revisions, and we are confident that he can do a fine job on this surgery.
Thanks to all of you for your prayers and gifts for Jessie. Please keep the prayers up. We respectfully ask that in place of gifts, you send a card or make a donation in Jessie’s honor to one of the following organizations.
The Hemispherectomy Foundation http://www.HemiFoundation.org
The RE Children’s Project http://www.rechildrens.org
Citizens United for Research in Epilepsy http://www.cureepilepsy.org
Blessings to All,
Cris
Thursday, December 2, 2010
Seizures and What to do Next
Jessie is having a much better day today. She is eating again, smiling, and active. She is a different kid than she was yesterday. She even did her homework today. Praise God and the doctors for watching over our girl !!
Her seizures today are much less severe and less frequent. Because they had to give her rescue medicine 2 days ago (Ativan) for a Status Seizure (one that won’t stop on its own), and other sedation for yesterday’s MRI, it appears that the cycle is broken, temporarily. This buys us some time and allows her to gain strength, eat, and rest from the seizures. Here primary epilepsy medication (Tegretol) has been increased, and will continue to increase to hold off the seizure activity.
Dr. Hernandez (epileptologist) came by today, and showed me her EEG. It was obvious that she was having seizures in the right hemisphere. He also showed me her MRI today. He showed me that there was some leftover tissue and two connections that were the suspect areas. The SPECT scans should verify this. We will know tomorrow.
The good news is that there is no seizure activity in the Left Hemisphere (her good side). This, of-course, would be devastating news for a child that only has the left half of her Cerebral Cortex.
So what are the next steps? Well, unfortunately, it looks like Jessie will have to undergo brain surgery to have this tissue removed and the connections clipped. Medication is usually very ineffective, in the long-term, for Rasmussen’s tissue, and Kristi and I don’t want to take a chance with the connections that are still there. The last thing that we need is seizure activity crossing over to the good Hemisphere. This follow-up surgery is not uncommon in the Hemispherectomy community…which is unfortunate. In the “Hemi Community” we call this surgery a “Redo”, which is bit of a misnomer.
The rehabilitation should be much easier this time, and her hospital stay should be much shorter than in 2008. As you all know, Jessie an extremely strong-willed child, and she is going to be fine, especially with all of you praying for her and God continuing with His glorious plan for her.
Thanks to everyone for your prayers, cards, gifts and visits. The prayers are the most important thing. We ask that if feel compelled to do something for Jessie over the next few weeks, please consider a donation to one of the following Public Charities in Jessie’s Name. You can donate online or by mail, just specify “Jessie Hall” in the comment field. All three below are IRS 501c3 organizations, which means you get a nice end-of-the-year deduction.
The Hemispherectomy Foundation : http://www.hemifoundation.org/
The RE Children’s Project : http://www.rechildrens.org/
Citizen’s United for Research in Epilepsy : http://www.cureepilepsy.org/
Blessings to All for your support over the past few days.
Cris
Her seizures today are much less severe and less frequent. Because they had to give her rescue medicine 2 days ago (Ativan) for a Status Seizure (one that won’t stop on its own), and other sedation for yesterday’s MRI, it appears that the cycle is broken, temporarily. This buys us some time and allows her to gain strength, eat, and rest from the seizures. Here primary epilepsy medication (Tegretol) has been increased, and will continue to increase to hold off the seizure activity.
Dr. Hernandez (epileptologist) came by today, and showed me her EEG. It was obvious that she was having seizures in the right hemisphere. He also showed me her MRI today. He showed me that there was some leftover tissue and two connections that were the suspect areas. The SPECT scans should verify this. We will know tomorrow.
The good news is that there is no seizure activity in the Left Hemisphere (her good side). This, of-course, would be devastating news for a child that only has the left half of her Cerebral Cortex.
So what are the next steps? Well, unfortunately, it looks like Jessie will have to undergo brain surgery to have this tissue removed and the connections clipped. Medication is usually very ineffective, in the long-term, for Rasmussen’s tissue, and Kristi and I don’t want to take a chance with the connections that are still there. The last thing that we need is seizure activity crossing over to the good Hemisphere. This follow-up surgery is not uncommon in the Hemispherectomy community…which is unfortunate. In the “Hemi Community” we call this surgery a “Redo”, which is bit of a misnomer.
The rehabilitation should be much easier this time, and her hospital stay should be much shorter than in 2008. As you all know, Jessie an extremely strong-willed child, and she is going to be fine, especially with all of you praying for her and God continuing with His glorious plan for her.
Thanks to everyone for your prayers, cards, gifts and visits. The prayers are the most important thing. We ask that if feel compelled to do something for Jessie over the next few weeks, please consider a donation to one of the following Public Charities in Jessie’s Name. You can donate online or by mail, just specify “Jessie Hall” in the comment field. All three below are IRS 501c3 organizations, which means you get a nice end-of-the-year deduction.
The Hemispherectomy Foundation : http://www.hemifoundation.org/
The RE Children’s Project : http://www.rechildrens.org/
Citizen’s United for Research in Epilepsy : http://www.cureepilepsy.org/
Blessings to All for your support over the past few days.
Cris
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