We were suposed to go on an appointment, this is one we have already canceled before, but yesterday Kiera was having an off day and then vomited.
Ove the night hours, Kiera was very agitated, so agitated she wriggeled herself right out of her brief! She then had a 9 minute seizure and finnaly fell asleep around 6am. I am hoping that this is not heading into something more and as of right now her lungs sound fine.
It seems that we might be teetering right now.... we will see how the rest of the night goes. Kiera's O2 has droprd down in the low 80's 2 times today which required oxygen, but her lungs are still sounding ok....
Kiera's Road with CDKL-5 I am writing this blog as a journal, but also to bring awarness to this rare disorder. Thank you for reading!
Tuesday, September 14, 2010
Tuesday, August 24, 2010
Very long seizures again...
Well it's not unexpected because we are decreasing one of her seizure meds but Kiera had a 31 minute GTC seizure on Sunday, the day before she had a very hard GTC that lasted 14 minutes. They are so strong I am surprised that she has not broke anything yet with them.
With lowering the Lyrica, she has lost a little weight. Kiera is now at 102 LBS. I think that she will continue to loose as we go off the lyrica but we are not alarmed, neither my husband or I were overweight in our young 20's.
We have brought in a Palliative care team to help with the future needs that Kiera might be facing. Kiera has restrictive lung disease on the right, secondary to neuromuscular scoliosis. As her curve progresses her lung capacity will diminish and Kiera may have more pain from her back. Surgery is always an option, but it's not for everyone. We will know more in December after her Ortho appointment as far as where her curve is.
We have been working to get Kiera back up into her stander but she is not a big fan :( I am not surprised though, it's been over 1 1/2 years since she was in her stander and there have been a lot of changes with her body since then.
We are also looking for a suitable bed for Kiera, the one she has just has not held up to the use that we need it too. The zipper has been fixed a number of times over the last 3 years, and the crank to go up and down and elevate her head, keep bending and the more it gets fixed, the weaker it is, so eventually that is going to break! Kiera needs her bath chair adapted again because of the curve on her spine has increased AND her wheelchair seat needs to be looked at or a new one made... I feel like it's a loosing battle with all of her equipment and bracing!!!!
We were supposed to see her dietitian today but I cancelled it, I am tired of having appointments 'just because it's time' today's appointment would have not changed anything, so why get Kiera up so early to shower, dress, fix her hair (all of which she does not care for) and drive through rush hour traffic for 25-30 minutes, just for a check-up? I just don't see it!
This Saturday is my birthday and I love my birthday ( I don't know why, I just do!) but this birthday I will be spending it at a funeral. I will be 3 1/2 to 4 hours away from Kiera, I hope that she will be okay over the weekend.
On a more up beat note, I bought Kiera real Cheerleaders pom-pon's, they are the color of our Football team the Vikings!!! I am so bad, I want to give them to her today, but her Birthday is not until October!!!!! I think I am going to have my husband hide them from ME so I don't 'accidentally put them in my car and somehow they end up at Kiera's home'!!!!!
With lowering the Lyrica, she has lost a little weight. Kiera is now at 102 LBS. I think that she will continue to loose as we go off the lyrica but we are not alarmed, neither my husband or I were overweight in our young 20's.
We have brought in a Palliative care team to help with the future needs that Kiera might be facing. Kiera has restrictive lung disease on the right, secondary to neuromuscular scoliosis. As her curve progresses her lung capacity will diminish and Kiera may have more pain from her back. Surgery is always an option, but it's not for everyone. We will know more in December after her Ortho appointment as far as where her curve is.
We have been working to get Kiera back up into her stander but she is not a big fan :( I am not surprised though, it's been over 1 1/2 years since she was in her stander and there have been a lot of changes with her body since then.
We are also looking for a suitable bed for Kiera, the one she has just has not held up to the use that we need it too. The zipper has been fixed a number of times over the last 3 years, and the crank to go up and down and elevate her head, keep bending and the more it gets fixed, the weaker it is, so eventually that is going to break! Kiera needs her bath chair adapted again because of the curve on her spine has increased AND her wheelchair seat needs to be looked at or a new one made... I feel like it's a loosing battle with all of her equipment and bracing!!!!
We were supposed to see her dietitian today but I cancelled it, I am tired of having appointments 'just because it's time' today's appointment would have not changed anything, so why get Kiera up so early to shower, dress, fix her hair (all of which she does not care for) and drive through rush hour traffic for 25-30 minutes, just for a check-up? I just don't see it!
This Saturday is my birthday and I love my birthday ( I don't know why, I just do!) but this birthday I will be spending it at a funeral. I will be 3 1/2 to 4 hours away from Kiera, I hope that she will be okay over the weekend.
On a more up beat note, I bought Kiera real Cheerleaders pom-pon's, they are the color of our Football team the Vikings!!! I am so bad, I want to give them to her today, but her Birthday is not until October!!!!! I think I am going to have my husband hide them from ME so I don't 'accidentally put them in my car and somehow they end up at Kiera's home'!!!!!
Tuesday, July 27, 2010
Thank You!
For all of you that have made comments on this blog, thank you! I have to translate your comments most of the time, but your messages are very nice! :)
Tuesday, July 13, 2010
Wow, it's already been one year since Kiera's surgery
It's hard to believe that a year has gone by already since Kiera had her emergency surgery last July 4th.
I still remember how I felt when I was asked for my verbal consent to go ahead with emergency surgery. I also can remember what the drive home from up north was like and having the fear that we were not going to get there before something horrible would happen.
Her scar is still there, and issues around the surgery, but unrelated are still present....and always will be now. she was critical and had to be placed on a ventilator even before the surgery due to aspirating on the contrast the Doctors gave her. But Kiera's here, and has proven to be a very strong young woman.
Over the last few day's Kiera has been in one of her giggly moods which makes everyone around her very happy, love that!!!
I still remember how I felt when I was asked for my verbal consent to go ahead with emergency surgery. I also can remember what the drive home from up north was like and having the fear that we were not going to get there before something horrible would happen.
Her scar is still there, and issues around the surgery, but unrelated are still present....and always will be now. she was critical and had to be placed on a ventilator even before the surgery due to aspirating on the contrast the Doctors gave her. But Kiera's here, and has proven to be a very strong young woman.
Over the last few day's Kiera has been in one of her giggly moods which makes everyone around her very happy, love that!!!
Wednesday, June 16, 2010
Things are going okay right now, but Kiera's seizures are still up and we are choosing to ride them out...of course we have the rescue medication and all, but we have learned over the years to not jump every time she goes through these cycles.
last week we had to put into play her new protocol for aspiration episodes while at home. She had a emisis last week but her 02 sats did not drop this time ( they don't drop every time when she throws up) but the plan was put into play and Kiera did well.
I have always said that if I ever needed to go through any type of surgery, I will not complain what-so-ever only because Kiera has gone through SO much in her last 23 years and all the surgeries were because my husband and I made the decision to go ahead with each and every one of them. Kiera had no say in the matter. Two weeks ago I had to have something done and I have never been put under in my whole life. I needed to have an IV and it was placed in the bend of my elbow... wow, did that hurt! I started to think about every time Kiera has had to have IV's and she can have one in for quite some time, and I was feeling the pain....? what does Kiera go through every time?
On a more positive note, our organization had just received our 501(c)3 status!!! We are now listed as a registered non-profit organization. Our name is 'International Foundation for CDKL5 research' (IFCR) Our web site will be launched very soon. We have a lot of work to do this year and our hope is to find more ways to fund the research that so desperately needs to continue so our dream of finding a cure can be more attainable.
last week we had to put into play her new protocol for aspiration episodes while at home. She had a emisis last week but her 02 sats did not drop this time ( they don't drop every time when she throws up) but the plan was put into play and Kiera did well.
I have always said that if I ever needed to go through any type of surgery, I will not complain what-so-ever only because Kiera has gone through SO much in her last 23 years and all the surgeries were because my husband and I made the decision to go ahead with each and every one of them. Kiera had no say in the matter. Two weeks ago I had to have something done and I have never been put under in my whole life. I needed to have an IV and it was placed in the bend of my elbow... wow, did that hurt! I started to think about every time Kiera has had to have IV's and she can have one in for quite some time, and I was feeling the pain....? what does Kiera go through every time?
On a more positive note, our organization had just received our 501(c)3 status!!! We are now listed as a registered non-profit organization. Our name is 'International Foundation for CDKL5 research' (IFCR) Our web site will be launched very soon. We have a lot of work to do this year and our hope is to find more ways to fund the research that so desperately needs to continue so our dream of finding a cure can be more attainable.
Wednesday, June 2, 2010
There comes a time where you just have to let go, or at least accept how things are and where they might be heading.
About 1 1/2 weeks ago Kiera ended up in the hospital again because prior to going in, she was having issues with gagging that finally turned into vomiting. Kiera's O2 dropped again and with suctioning and oxygen, it just would not go back up. 911 was called for transport.
I was with a friend while he was shopping for new flooring, the store that we happened to be at, at the moment was between Kiera's home and the hospital. About 20 minutes after I got the call that she was heading into the hospital, I saw an ambulance driving about 70 miles per hour on the freeway. I just knew that Kiera was in that vehicle.... the timing was right and I just felt sick.
The chest x-ray did show aspiration, so Kiera remained on oxygen and started on an iv antibiotic. On day 2 she was back to herself!
The hospitalization just prior to this one was identical to this one.... but this is not typical if you have read my earlier notes.
Kiera was out of the hospital within 4 days! The hospital proposed writing a protocol that might keep Kiera at home (in situations like the last two) and try to clear her up at home. My fear...or one of my fears is the fact that while at home, we have never been successfully getting her O2 even up into the low 90's after an episode and the response time for the EMT's is around 10 minutes.
Her Doctor is working on the first draft and I hope that by this Friday I will be able to read what he has so far. I am worried for the first time that we will have to put this protocol into play.
I do however understand partly where the hospital is coming from. They say that if these kind of situations come up and we can take care of this at home, that would be best for Kiera... I agree with this wholeheartedly, but Kiera can turn very quickly so it feels like this could be a ticking time bomb.
Over the Memorial weekend my husband and I were able to get away to my in laws home up north. It was a nice long weekend and much needed. Before leaving for out of town I always tell Kiera's home that we are not going to be in town, well now it's a joke with us all. We always say "Don't tell Kiera" I can count on both hands how many times we raced back home because Kiera was in trouble.... you have to laugh about things sometimes!
We were planing on staying up north through Tuesday, but after looking at my calendar I saw that Kiera had an appointment that day :( so at first I tried to reschedule but the next available appointment was not for another 6 months. This was with her spine Doctor and we had some issues that I did not feel we could wait for another 6 months, so we could not cancel.
In earlier notes I talked about Kiera's TLSO (back brace) and how she has not been able to wear it. I have also talked about the placement of Kiera's new J tube and my frustrations with the whole thing.
Let me back up just a bit, we see this Doctor every 6 months so our last visit was last December. Kiera had a spine x-ray while in her TLSO and in her stander. Kiera did not like this at all because she had not worn the brace or stood in her stander for over one year. While taking this x-ray in December Kiera started to cry and then went into a seizure, doing this calmed her body enough to get a good x-ray.
That x-ray showed her curve at 49 degrees.
This time we took her out of her wheelchair and she was placed on a small bench (this is always so hard to do and Kiera can not sit without total support) she looked awful and again, she was very uncomfortable. This x-ray showed a 75 degree curve. Surgery is usually recommended at 50 degrees.
When we were called back to talk with her Doctor, the x-rays were already up on the lighted screen and I remember thinking to myself 'that has got to be about 75 degrees'.
Kiera's Doctor came in and I started with the problem with her back brace. Since Kiera's twisted bowel surgery last July that caused the Doctors to have to relocate her J tube, bracing Kiera's back has become impossible...for a few reasons. One huge issue is that there needs to be so much pressure applied to Kiera's hips and the new J is right above the bend of her waist. placing the brace then causes stomach acids to leak out and it burns her skin immediately. The burn is very bad and hurts Kiera, understandably so. The burn itself is very difficult to heal after it happens. SO.... the brace is out....unless we can find a GI doctor that will agree to do another surgery on her J tube, that is highly doubtful at this point.
I then asked about the progression of a nueromuscular curve if we can't use the brace and how that would effect her lung function. He said that her curve will most likely continue to get worse and in turn so could her lung function. Kiera's right lung is already compromised because of the direction of the curve on the top part of her back.
We then talked about pain with this degree of Kyphosis. He said that some people that are more' with it' with in their days, will say that it is painful, others might say that they are not in pain. We have been seeing more signs and symptoms of pain with Kiera.
We also talked about the true benefits of continuing the use of her stander (Kiera can not use her stander without her back brace, she just does not have the trunk control) He told me that if at all possible Kiera should get back into it. We will have to see how we can adapt it so she will have the support she needs to be safe while using it. Then there is always 'will she be comfortable in the stander after not using it for so long?'
At the end of this appointment I asked what her x-ray read and he said that it was at a 75 degree curve... but we are comparing apples to oranges, so next time the x-ray will be done in her wheelchair so it will be more comparable to the x-ray from last December.
I feel sometimes I can never get any traction in life.
About 1 1/2 weeks ago Kiera ended up in the hospital again because prior to going in, she was having issues with gagging that finally turned into vomiting. Kiera's O2 dropped again and with suctioning and oxygen, it just would not go back up. 911 was called for transport.
I was with a friend while he was shopping for new flooring, the store that we happened to be at, at the moment was between Kiera's home and the hospital. About 20 minutes after I got the call that she was heading into the hospital, I saw an ambulance driving about 70 miles per hour on the freeway. I just knew that Kiera was in that vehicle.... the timing was right and I just felt sick.
The chest x-ray did show aspiration, so Kiera remained on oxygen and started on an iv antibiotic. On day 2 she was back to herself!
The hospitalization just prior to this one was identical to this one.... but this is not typical if you have read my earlier notes.
Kiera was out of the hospital within 4 days! The hospital proposed writing a protocol that might keep Kiera at home (in situations like the last two) and try to clear her up at home. My fear...or one of my fears is the fact that while at home, we have never been successfully getting her O2 even up into the low 90's after an episode and the response time for the EMT's is around 10 minutes.
Her Doctor is working on the first draft and I hope that by this Friday I will be able to read what he has so far. I am worried for the first time that we will have to put this protocol into play.
I do however understand partly where the hospital is coming from. They say that if these kind of situations come up and we can take care of this at home, that would be best for Kiera... I agree with this wholeheartedly, but Kiera can turn very quickly so it feels like this could be a ticking time bomb.
Over the Memorial weekend my husband and I were able to get away to my in laws home up north. It was a nice long weekend and much needed. Before leaving for out of town I always tell Kiera's home that we are not going to be in town, well now it's a joke with us all. We always say "Don't tell Kiera" I can count on both hands how many times we raced back home because Kiera was in trouble.... you have to laugh about things sometimes!
We were planing on staying up north through Tuesday, but after looking at my calendar I saw that Kiera had an appointment that day :( so at first I tried to reschedule but the next available appointment was not for another 6 months. This was with her spine Doctor and we had some issues that I did not feel we could wait for another 6 months, so we could not cancel.
In earlier notes I talked about Kiera's TLSO (back brace) and how she has not been able to wear it. I have also talked about the placement of Kiera's new J tube and my frustrations with the whole thing.
Let me back up just a bit, we see this Doctor every 6 months so our last visit was last December. Kiera had a spine x-ray while in her TLSO and in her stander. Kiera did not like this at all because she had not worn the brace or stood in her stander for over one year. While taking this x-ray in December Kiera started to cry and then went into a seizure, doing this calmed her body enough to get a good x-ray.
That x-ray showed her curve at 49 degrees.
This time we took her out of her wheelchair and she was placed on a small bench (this is always so hard to do and Kiera can not sit without total support) she looked awful and again, she was very uncomfortable. This x-ray showed a 75 degree curve. Surgery is usually recommended at 50 degrees.
When we were called back to talk with her Doctor, the x-rays were already up on the lighted screen and I remember thinking to myself 'that has got to be about 75 degrees'.
Kiera's Doctor came in and I started with the problem with her back brace. Since Kiera's twisted bowel surgery last July that caused the Doctors to have to relocate her J tube, bracing Kiera's back has become impossible...for a few reasons. One huge issue is that there needs to be so much pressure applied to Kiera's hips and the new J is right above the bend of her waist. placing the brace then causes stomach acids to leak out and it burns her skin immediately. The burn is very bad and hurts Kiera, understandably so. The burn itself is very difficult to heal after it happens. SO.... the brace is out....unless we can find a GI doctor that will agree to do another surgery on her J tube, that is highly doubtful at this point.
I then asked about the progression of a nueromuscular curve if we can't use the brace and how that would effect her lung function. He said that her curve will most likely continue to get worse and in turn so could her lung function. Kiera's right lung is already compromised because of the direction of the curve on the top part of her back.
We then talked about pain with this degree of Kyphosis. He said that some people that are more' with it' with in their days, will say that it is painful, others might say that they are not in pain. We have been seeing more signs and symptoms of pain with Kiera.
We also talked about the true benefits of continuing the use of her stander (Kiera can not use her stander without her back brace, she just does not have the trunk control) He told me that if at all possible Kiera should get back into it. We will have to see how we can adapt it so she will have the support she needs to be safe while using it. Then there is always 'will she be comfortable in the stander after not using it for so long?'
At the end of this appointment I asked what her x-ray read and he said that it was at a 75 degree curve... but we are comparing apples to oranges, so next time the x-ray will be done in her wheelchair so it will be more comparable to the x-ray from last December.
I feel sometimes I can never get any traction in life.
Monday, March 1, 2010
How time can get away from me...
It's been so long since I have blogged anything here.
July is past us now and Kiera's surgery site is looking good. We are still having issues with the J tube site, it's been a constant battle with leaking that leads to a big rash around her stomach.
Her Doctors keep telling us that J's are notorious for this, but I tend to disagree only for the fact that the old j did not do this, it was up a bit higher than the new one so I think that might be part of the issue.
We have tried everything we can think of and nothing seems to help the rash, but then why would anything help when there is a constant issue with leaking?
I hope to one day find the answer but I hope that would not involve another surgery.
Kiera has been doing okay since July although a few times in and out of the hospital, but mostly related to the surgery.
She was just in for 3 days for what we think may have been a intestinal bug, but with Kiera nothing is ever simple.
Kiera seemed to have had a cold the day prior and the next morning we had an early appointment. While getting ready Kiera vomited, the house called me to see what we should do about the appointment and it was decided that we cancel because this was going to be an all day appointment and if Kiera was not feeling well, I did not want to put her through this.
The house called the clinic to cancel, then with-in a half an hour they called me back to say that Kiera had thrown up 2 more times and that her Oxygen was down to the mid to low 60's. They tried suctioning and gave 10LT of O2, that only brought her Oxygen up to the mid 80's. 911 was called and the EMT's made the decision to take Kiera to a local hospital rather than the one that we use in the city to get her stabilized.
We met her at the hospital and she did not look great, she was pale and she continued to vomit. Her heart rate was higher than her normal (she has tachycardia) and her blood pressure was at her normal low, but the Doctors were worried about this until we told them that this was where Kiera's numbers are most of the time.
At one point her fingers and toes got very gray and the nail beds were purple, then she started to just shiver, she would do that and then quit, then do it again... very scary to see as her mom.
She did need to be on oxygen up until the day she left the hospital but did not need to remain on it.
So in the end it seemed to be a 24 hour bug with the added aspiration episode to complicate things for a bit.
Kiera just had a nice break from her seizures since the hospital stay, she went 13 days without any seizures!!
But now they are back with a vengance, it's strange how things can change so quickly in just a day.
Yesterday she had 5 seizures ranging between 7 to 13 minutes, two of them required rescue meds and today 3 seizures, so just to try to stop them from continuing today, she received another rescue med.
We will see what tomorrow will bring.
July is past us now and Kiera's surgery site is looking good. We are still having issues with the J tube site, it's been a constant battle with leaking that leads to a big rash around her stomach.
Her Doctors keep telling us that J's are notorious for this, but I tend to disagree only for the fact that the old j did not do this, it was up a bit higher than the new one so I think that might be part of the issue.
We have tried everything we can think of and nothing seems to help the rash, but then why would anything help when there is a constant issue with leaking?
I hope to one day find the answer but I hope that would not involve another surgery.
Kiera has been doing okay since July although a few times in and out of the hospital, but mostly related to the surgery.
She was just in for 3 days for what we think may have been a intestinal bug, but with Kiera nothing is ever simple.
Kiera seemed to have had a cold the day prior and the next morning we had an early appointment. While getting ready Kiera vomited, the house called me to see what we should do about the appointment and it was decided that we cancel because this was going to be an all day appointment and if Kiera was not feeling well, I did not want to put her through this.
The house called the clinic to cancel, then with-in a half an hour they called me back to say that Kiera had thrown up 2 more times and that her Oxygen was down to the mid to low 60's. They tried suctioning and gave 10LT of O2, that only brought her Oxygen up to the mid 80's. 911 was called and the EMT's made the decision to take Kiera to a local hospital rather than the one that we use in the city to get her stabilized.
We met her at the hospital and she did not look great, she was pale and she continued to vomit. Her heart rate was higher than her normal (she has tachycardia) and her blood pressure was at her normal low, but the Doctors were worried about this until we told them that this was where Kiera's numbers are most of the time.
At one point her fingers and toes got very gray and the nail beds were purple, then she started to just shiver, she would do that and then quit, then do it again... very scary to see as her mom.
She did need to be on oxygen up until the day she left the hospital but did not need to remain on it.
So in the end it seemed to be a 24 hour bug with the added aspiration episode to complicate things for a bit.
Kiera just had a nice break from her seizures since the hospital stay, she went 13 days without any seizures!!
But now they are back with a vengance, it's strange how things can change so quickly in just a day.
Yesterday she had 5 seizures ranging between 7 to 13 minutes, two of them required rescue meds and today 3 seizures, so just to try to stop them from continuing today, she received another rescue med.
We will see what tomorrow will bring.
Subscribe to:
Posts (Atom)