I was informed a few days ago that Stephanie's shunt surgery is now scheduled for this coming Tuesday, February 12th. She's already had her pre-op physical this week and will meet with Anaesthesia next Monday. The paediatrician put her on antibiotics since he confirmed she also has an ear infection that has been perforated! I am definitely getting nervous and hope she can tolerate the miserable first week of low pressure headaches and surgery recovery in general. The last 6 days or so she is constantly saying, "Mommy, I'm tired", and will want to lay down in bed. This is so concerning for us and we wonder if her pressure is really high or if it is just her medication making her feel this lousy. I guess next week's implant will tell us if she gets some relief.
Stephanie is looking forward to having Auntie Karen and some family over tomorrow for turkey dinner and a great visit! I will post again probably the day of surgery to keep everyone updated of her progress.
Have a pleasant weekend! The weather is supposed to be quite mild for us, yay!!
- Dar
Showing posts with label Surgery. Show all posts
Showing posts with label Surgery. Show all posts
Friday, 8 February 2013
Saturday, 2 February 2013
Shunt Surgery News
Well, as always, things aren't going to go quite as planned. Stephanie and I met with the neurosurgeon yesterday and we are planning to implant a shunt within the next couple of weeks. A special valve has to be ordered so we are hoping for around the 19th of February.
The unexpected part came when the surgeon said Stephanie can't have a brain shunt (ventriculoperitoneal shunt) because her ventricles are too small. That leaves us with gettting a lumboperitoneal shunt. This goes into her spine on her lower back and the valve sits under the skin by her oblique muscles and the drain tube runs into her abdomen in the front. I am nervous enough about having something foreign implanted into my little girl, but it makes me even more uneasy knowing that this kind of shunt can cause another serious condition called Chiari Malformation wherein the brain eventually malforms by getting "sucked in" a bit into the spinal column at the base of your brain/neck. It is a risk, a small one, but it happens to people and I had already read alot about it on one of the forums I frequent. These are real people dealing with this additional condition. Yikes! One day at a time Darlyn, one day at a time.
So the next couple of weeks will consist of a few more appointments - pre-op physical, anesthesia follow up etc.
As for some good news, Stephanie is really enjoying our new home! We moved a couple of weeks ago and it has been great for all of us to spend time on the same level. We moved from a two story house into a bungalow and it was a good decision! She is enjoying exploring the new space and my husband and I are able to include her in more daily activities since she used to spend most of her time in her room on the second floor. He even had her sweeping the kitchen yesterday!
Until next post - keep smiling!
The unexpected part came when the surgeon said Stephanie can't have a brain shunt (ventriculoperitoneal shunt) because her ventricles are too small. That leaves us with gettting a lumboperitoneal shunt. This goes into her spine on her lower back and the valve sits under the skin by her oblique muscles and the drain tube runs into her abdomen in the front. I am nervous enough about having something foreign implanted into my little girl, but it makes me even more uneasy knowing that this kind of shunt can cause another serious condition called Chiari Malformation wherein the brain eventually malforms by getting "sucked in" a bit into the spinal column at the base of your brain/neck. It is a risk, a small one, but it happens to people and I had already read alot about it on one of the forums I frequent. These are real people dealing with this additional condition. Yikes! One day at a time Darlyn, one day at a time.
So the next couple of weeks will consist of a few more appointments - pre-op physical, anesthesia follow up etc.
As for some good news, Stephanie is really enjoying our new home! We moved a couple of weeks ago and it has been great for all of us to spend time on the same level. We moved from a two story house into a bungalow and it was a good decision! She is enjoying exploring the new space and my husband and I are able to include her in more daily activities since she used to spend most of her time in her room on the second floor. He even had her sweeping the kitchen yesterday!
Until next post - keep smiling!
Thursday, 24 January 2013
Unfortunate Turn of Events
As I've mentioned in my last post, we have been preparing for Stephanie to have her second brain surgery coming up next week. After yesterday's lumbar puncture, this is not going to happen just yet.
Stephanie had a lumbar puncture (spinal tap) yesterday to determine if the fluid pressure in her brain (intracranial hypertension or aka pseudotumor cerebri) was reasonable enough for the surgeon to be comfortable with opening up her skull. It turns out her fluid pressure was 41! This may not mean anything to most of you reading but the number should be around 10-20. On July 10, 2010 she was admitted to hospital and her first lumbar puncture was a pressure of 76, one of the highest they have ever seen. This resulted in massive hemorrhaging of her optic discs, leaving her with damaged vision and excrutiating head pain. Throughout the last couple of years her pressure has mostly been in the 20 or 30 range...still too high but we continued to try to manage it with Diamox and Prednisone.
With yesterday's results, the decision has been made to surgically implant a Ventriculoperitoneal Shunt in order to drain the excess fluid. If left untreated, it would damage brain tissue and vision and leave her in tremendous pain on a daily basis. The symptoms are the same as if you had a brain tumor, but there is no tumor to treat or remove.
Anyway, we knew that one day she may have to have a shunt but we were expecting to deal with the seizures right now and complete her second brain surgery to help alleviate the number of seizures she has each day. A shunt is a lifetime ordeal - infections, revision surgeries, complications etc.
Now we are faced with placing the shunt first, getting her pressure to a reasonable level over time and then considering the second part of her brain surgery. Just another thing to add to her already very complicated little kid life.
The neurologist was expecting to speak to the neurosurgeon last night to determine when Stephanie can be scheduled for surgery. I am anxiously awaiting an email or phone call now to find out what happens next and when.
I will keep everyone posted of the events as they unfold.
Ugh!
Stephanie had a lumbar puncture (spinal tap) yesterday to determine if the fluid pressure in her brain (intracranial hypertension or aka pseudotumor cerebri) was reasonable enough for the surgeon to be comfortable with opening up her skull. It turns out her fluid pressure was 41! This may not mean anything to most of you reading but the number should be around 10-20. On July 10, 2010 she was admitted to hospital and her first lumbar puncture was a pressure of 76, one of the highest they have ever seen. This resulted in massive hemorrhaging of her optic discs, leaving her with damaged vision and excrutiating head pain. Throughout the last couple of years her pressure has mostly been in the 20 or 30 range...still too high but we continued to try to manage it with Diamox and Prednisone.
With yesterday's results, the decision has been made to surgically implant a Ventriculoperitoneal Shunt in order to drain the excess fluid. If left untreated, it would damage brain tissue and vision and leave her in tremendous pain on a daily basis. The symptoms are the same as if you had a brain tumor, but there is no tumor to treat or remove.
Anyway, we knew that one day she may have to have a shunt but we were expecting to deal with the seizures right now and complete her second brain surgery to help alleviate the number of seizures she has each day. A shunt is a lifetime ordeal - infections, revision surgeries, complications etc.
Now we are faced with placing the shunt first, getting her pressure to a reasonable level over time and then considering the second part of her brain surgery. Just another thing to add to her already very complicated little kid life.
The neurologist was expecting to speak to the neurosurgeon last night to determine when Stephanie can be scheduled for surgery. I am anxiously awaiting an email or phone call now to find out what happens next and when.
I will keep everyone posted of the events as they unfold.
Ugh!
Sunday, 30 December 2012
Preparing For Another Surgery
Belated Merry Christmas! I know it's been awhile since I last posted, and alot has happened since then. Upon our return from Disney World, my husband and I sold our house and bought a new one! Needless to say this was stressful and time consuming...but we are excited to make the big move to just outside our city limits. Stephanie will be getting a much bigger room finally and no stairs! Unfortunately, just after accepting an offer on our house, with a possession date of February 1, 2013, Stephanie's Neurologist confirmed that we would be moving ahead with her second brain surgery, Corpus Callsotomy. The kicker was that the date is set for January 29th!
Luckily we were able to find a great home and will move for January 19th, giving us a few days to get settled before the big surgery. The previous surgery was a big risk and we thought it would help Stephanie get some of the relief she needed from all her seizures. This was not the case and she continues to suffer from numerous daily seizures. Now we are faced with completing the separation of the two hemispheres of her brain. A recent MRI showed some tissue still connected in the anterior part of the brain and the 1/3 that was left intact in the posterior part of the brain. The surgeon will sever the remaining fibres of callosum and the two hemispheres of her brain will be completely separated. This in itself may cause some additional post physiotherapy issues between the two halves of her body and how she functions. There is risk of her losing her speech ability as well, which was our main reason for only severing 2/3 of the callosum during the first surgery. But now we feel that we have to try everything we can in order to help her get some relief and hopefully slow down any damage the seizures are causing. We've come this far, we have to keep going for her sake.
It is still the worst feeling in the world to have to make this decision to put my child in harms way in hopes of saving her in the future. Would all parents do this? No, I don't think so. Some would advocate further medications. Some would advocate the Ketogenic Diet, etc. etc. Stephanie isn't herself in this condition. She is so heavily medicated right now in preparation for her surgery that she can barely function without wanting to lay down and sleep. In preparation for this surgery, we again have to first determine if her intracrainial pressure is low enough for the surgeon to be comfortable opening her up. This means heavier doses of medication and a lumbar puncture the week before surgery to determine if she is indeed eligible...same procedure we followed this last year. The first time around in April, 2012 her pressure was too high and the surgery was cancelled. We pushed to try the medication trials again and sure enough her pressure was low enough to have the surgery in July.
Let's cross our fingers that Stephanie's body will cooperate and will be healthy enough for another brain surgery. She needs this. We need this.
Luckily we were able to find a great home and will move for January 19th, giving us a few days to get settled before the big surgery. The previous surgery was a big risk and we thought it would help Stephanie get some of the relief she needed from all her seizures. This was not the case and she continues to suffer from numerous daily seizures. Now we are faced with completing the separation of the two hemispheres of her brain. A recent MRI showed some tissue still connected in the anterior part of the brain and the 1/3 that was left intact in the posterior part of the brain. The surgeon will sever the remaining fibres of callosum and the two hemispheres of her brain will be completely separated. This in itself may cause some additional post physiotherapy issues between the two halves of her body and how she functions. There is risk of her losing her speech ability as well, which was our main reason for only severing 2/3 of the callosum during the first surgery. But now we feel that we have to try everything we can in order to help her get some relief and hopefully slow down any damage the seizures are causing. We've come this far, we have to keep going for her sake.
It is still the worst feeling in the world to have to make this decision to put my child in harms way in hopes of saving her in the future. Would all parents do this? No, I don't think so. Some would advocate further medications. Some would advocate the Ketogenic Diet, etc. etc. Stephanie isn't herself in this condition. She is so heavily medicated right now in preparation for her surgery that she can barely function without wanting to lay down and sleep. In preparation for this surgery, we again have to first determine if her intracrainial pressure is low enough for the surgeon to be comfortable opening her up. This means heavier doses of medication and a lumbar puncture the week before surgery to determine if she is indeed eligible...same procedure we followed this last year. The first time around in April, 2012 her pressure was too high and the surgery was cancelled. We pushed to try the medication trials again and sure enough her pressure was low enough to have the surgery in July.
Let's cross our fingers that Stephanie's body will cooperate and will be healthy enough for another brain surgery. She needs this. We need this.
Sunday, 26 August 2012
Home Sweet Home
After a long and drawn out stay at Children's Hospital, Stephanie and I finally came home last Saturday evening. 27 days in hospital was not what we were expecting when we were admitted on July 23rd for Stephanie's corpus callosotomy surgery. After getting sick a few days after surgery, with vomitting, fever spikes, not wanting to eat or drink and not wanting to sit up or walk, it was determined that she may have some form of infection...meaning meningitis. Because she was already on antibiotics when she was tested, doctors did not accept the negative test results and decided to treat Stephanie with a full course of antibiotics for bacterial meningitis. This meant another 3 weeks of two types of antibiotics.
I am happy to say that she is doing well at home this week! She is tired and does lay down alot but she is eating and drinking well. She's having some post antibiotic bowel issues but nothing we can't handle! We'll be meeting with the neurologist on September 19th to assess her recovery, her seizures and what the next course of action will be. If Stephanie continues to have seizures that involve both sides of her body, we may have to do another MRI to determine how much of the callosum was severed and if we need to have the second surgery to severe it completely. As always, time will tell...
Welcome home Stephanie!!!!
I am happy to say that she is doing well at home this week! She is tired and does lay down alot but she is eating and drinking well. She's having some post antibiotic bowel issues but nothing we can't handle! We'll be meeting with the neurologist on September 19th to assess her recovery, her seizures and what the next course of action will be. If Stephanie continues to have seizures that involve both sides of her body, we may have to do another MRI to determine how much of the callosum was severed and if we need to have the second surgery to severe it completely. As always, time will tell...
Welcome home Stephanie!!!!
Monday, 11 June 2012
Surgery Plan
So we have a plan (or plans) in place. Either way Stephanie will be having surgery at the end of July.
Once again we are going to try to get Stephanie's intracranial pressure down by significantly increasing her Diamox medication and putting her on a second round of steroids until July 18th. On that day, the neurologist will do another lumbar puncture to check her opening pressure. If the pressure is reasonable (the surgeon wants it to be under 20 cm H2O), Stephanie will undergo the Corpus Callosotomy that we are hoping for. If her pressure is still too high, she will be receiving a VP Shunt, which should hopefully decrease her pressure over time so that she may be eligible for the corpus callosotomy in the future.
Only time will tell how this plays out but for now at least we can expect some type of surgery by the end of July. One step closer to getting some much needed relief for Stephanie, both from her seizures and her increased pressure.
Wish her luck!!!
Once again we are going to try to get Stephanie's intracranial pressure down by significantly increasing her Diamox medication and putting her on a second round of steroids until July 18th. On that day, the neurologist will do another lumbar puncture to check her opening pressure. If the pressure is reasonable (the surgeon wants it to be under 20 cm H2O), Stephanie will undergo the Corpus Callosotomy that we are hoping for. If her pressure is still too high, she will be receiving a VP Shunt, which should hopefully decrease her pressure over time so that she may be eligible for the corpus callosotomy in the future.
Only time will tell how this plays out but for now at least we can expect some type of surgery by the end of July. One step closer to getting some much needed relief for Stephanie, both from her seizures and her increased pressure.
Wish her luck!!!
Tuesday, 29 May 2012
Waiting...
So this week we are waiting to hear more about what treatment will give Stephanie a better quality of life. In my last post I mentioned that she couldn't have the corpus callosotomy due to her increased intracranial pressure. We saw the neurosurgeon last week and discussed alternate options. We could try the Vagus Nerve Stimulator and give her a VP shunt sometime afterwards to deal with her pressure. I still don't have much hope that the VNS will make much difference for her. The other option is to go ahead with the shunt first, hoping that it would decrease her pressure enough to allow the surgeon to perform the corpus callosotomy. Either option is still months worth of fine tuning the setttings (VNS and shunt both need to be set to an adequate level to work for Stephanie). I emailed the neurologist last week and he advised he would be speaking with the surgeon this week to come up with a plan. Surgery could be for the end of June/beginning of July.
On another note, Stephanie's collar bone is healing well and she no longer needs to wear the figure of 8 brace! What a trooper! I still cannot believe that this kid broke her bone and continued with daily life as if nothing had happened...we can learn from this!
Oh, and one of the Make-A-Wish volunteers called last week to let us know that Jewel has granted other wishes and that they were still in the process of contacting and making arrangments. In the meantime, they will be purchasing Jewel merchandise to send over to Stephanie to enjoy. How great is that?! I guess I had better get moving with obtaining a passport for Steph...yikes!
On another note, Stephanie's collar bone is healing well and she no longer needs to wear the figure of 8 brace! What a trooper! I still cannot believe that this kid broke her bone and continued with daily life as if nothing had happened...we can learn from this!
Oh, and one of the Make-A-Wish volunteers called last week to let us know that Jewel has granted other wishes and that they were still in the process of contacting and making arrangments. In the meantime, they will be purchasing Jewel merchandise to send over to Stephanie to enjoy. How great is that?! I guess I had better get moving with obtaining a passport for Steph...yikes!
Friday, 4 May 2012
Surgery Postponed
Today is a difficult day. Stephanie was being considered for Corpus Callosotomy surgery, which was going to be performed either May 8th or 15th. I say "considered" because the neurosurgeon was reluctant to do the surgery due to Stephanie's increased intracranial pressure. She has been on prednisone for the month of April in hopes of lowering her pressure to a level (under 20cm H2O) that made the surgeon more comfortable with the risks of the surgery. On Wednesday, her lumbar puncture revealed that not only was her pressure too high, it was even higher than in February! At that time it was 28cm H2O and now it's 33cm H2O. After continually injuring herself from drop seizures, including breaking her collarbone a few weeks ago, I really had very high hopes for this surgery and the quality of life it might have brought to Stephanie. The consideration now is for the Vagus Nerve Stimulation implant to reduce her seizures and/or a VP shunt to control the Intracranial Hypertension. We nervously await any news from the neurologist and neurosurgeon for a decision and surgery dates.
On another note, for those of you that aren't friends or family and want to get to know Stephanie's story from the beginning, please browse the links/pages on the right hand side of this blog to learn more about her, her medical conditions and hospital visits, and of course all the great and happy things in Stephanie's life!!! Since this is still a work in progress, please forgive any missing information as I continue to edit descriptions and upload pictures. And as my husband so kindly reminded me, I will include the happy moments in Stephanie's life! She is a gift in our lives and I think all those who love her agree that she is much, much more to us than just the medical challenges I have outlined on this site!
The internet has been an invaluable tool for me during the last couple of years and researching has been a great coping mechanism. I feel that the more I know about a medical condition etc. the more in control I feel over what is happening to Stephanie and the better I can help her get through it. I hope that makes sense. The greatest help for me has been reading and following other parents and families that have chosen to share their stories and experiences. For this I am forever grateful and I hope that my choice to share can also be of help, in any small way, to that one person searching for some answers and comfort.
On another note, for those of you that aren't friends or family and want to get to know Stephanie's story from the beginning, please browse the links/pages on the right hand side of this blog to learn more about her, her medical conditions and hospital visits, and of course all the great and happy things in Stephanie's life!!! Since this is still a work in progress, please forgive any missing information as I continue to edit descriptions and upload pictures. And as my husband so kindly reminded me, I will include the happy moments in Stephanie's life! She is a gift in our lives and I think all those who love her agree that she is much, much more to us than just the medical challenges I have outlined on this site!
The internet has been an invaluable tool for me during the last couple of years and researching has been a great coping mechanism. I feel that the more I know about a medical condition etc. the more in control I feel over what is happening to Stephanie and the better I can help her get through it. I hope that makes sense. The greatest help for me has been reading and following other parents and families that have chosen to share their stories and experiences. For this I am forever grateful and I hope that my choice to share can also be of help, in any small way, to that one person searching for some answers and comfort.
Sunday, 18 March 2012
Welcome!
The intial startup of this blog is taking longer than I expected and I now realize that because I tend to try to make everything perfect, it might take forever before I get this thing up and running! So with that said, I will get back at it for now and let you all see the progress as I get things uploaded and provide as much detail about Stephanie`s journey as I can. My next post will most definitely be about Stephanie, her conditions and what brought us here today.
Cheers!
Cheers!
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