Tuesday, October 12, 2010
Regarding the previous video
for some reason its not playing to whole video.....im working on it....my computer skills are limited...haha....it seems to be missing over half of it.....ugh.....bare with me....
Wednesday, October 6, 2010
6 weeks today.....
Well where has time gone? I still think we are is total shock that Kaden is gone....shock or is it that we don't wanna accept that we are no longer able to hold, cuddle, kiss, dress, bath, feed and the list goes on and on and on......I have not touched a single thing in his room. Everything is as I left it the day I took him to emerg for the last time. I thought the other day that Id be able to unpack the last bag I packed for him to head to the hospital....well....first I pulled out his med/feed schedule and then there it was....his last pair of sleepers he ever wore...well that ended that I quickly folded them up and placed them back in the bag and slid the bag under the highchair. There it sits and there I sit wondering when and if and how I'm going to be able to unpack that bag.....I cant wash his clothes that are in the hamper or even throw out the syringe that lays on his crib.....all things that in time. I'm sure ill be able to do it but I'm nowhere near ready to deal with that......some people may think 'whats the big deal?' but all I have to say to that is if you haven't been there you really have no idea......losing a child is something u cant even begin to understand unless you've been there.....and its bad enough that we have had to watch other people with their healthy children doing their thing and feeling like I'm in some weird club that I'm the only member to but now we have to be apart of this new group of 'losing a child'.....how unfair is life really? I guess really unfair as Paul and I are living proof of that.....
Elle is doing much better ....she has battled her fair share of illness in the last 6 months or more. She just got out of hospital a week ago and is doing great so far....unfortunately I had to take her into emerg on the anniversary of Kadens death so dealing with that and being in the same room in emerg as Kaden was that last time and having nurses and doctors saying their condolences cause they had just heard was very hard. Thankfully one of the docs that had been taking care of Kaden in some of his last days was on so she was so kind as to speed us through without all the questions that are normally answered......i am soooo grateful to her for that....so so grateful.....so anyways Elle is doing great...smiling, off oxygen and so insanely cute that I just wanna kiss her all day....and sometime I do because I need to enjoy every moment I have with her cause life is just so uncertain.
Elle is doing much better ....she has battled her fair share of illness in the last 6 months or more. She just got out of hospital a week ago and is doing great so far....unfortunately I had to take her into emerg on the anniversary of Kadens death so dealing with that and being in the same room in emerg as Kaden was that last time and having nurses and doctors saying their condolences cause they had just heard was very hard. Thankfully one of the docs that had been taking care of Kaden in some of his last days was on so she was so kind as to speed us through without all the questions that are normally answered......i am soooo grateful to her for that....so so grateful.....so anyways Elle is doing great...smiling, off oxygen and so insanely cute that I just wanna kiss her all day....and sometime I do because I need to enjoy every moment I have with her cause life is just so uncertain.
Saturday, April 17, 2010
Still in the hospital!!!!!!!
Ok i have been ignoring this blog for about two months...sorry!!!!!!!!!! I did have full intentions of keeping up with this thing and had even wrote down a bunch of stuff and then upon getting home truly didn't feel like rehashing all the events....soooo....here i go....
Elle...she is doing well these days...she is in the monitored room at Children's Hospital. Her events over the last two months are as follows...
She got a very bad pneumonia which landed her in hospital. She under went sum treatments to help her breathing..was put on steroids and after about a week was ok to come home. The steroids however caused her to not sleep for over 4 days. Upon bringing her home she was still not sleeping and after being home for two days she started having seizures. The night of her seizures she was very uncomfortable and we honestly thought that she was going to die. She stopped breathing many times and Paul and I both had to resuscitate her before the ambulance arrived...she continued to seizure while they were there and she actually had to be resuscitated all the way to the hospital....very scary for everyone....she was placed in ICU. She was watched for a few days then transferred to the monitored room on the ward. They then hooked her up to an EEG and that is where we discovered she was having massive amounts of sub-clinical seizures that we were not able to see. She was whisked up to ICU and they then started the process of placing her into a medical induced coma....that was a long process to get her where they wanted her to be as far as being in a coma. She eventually got there and then we discovered that she was kinda put under too far so that made coming outta the coma take longer!! While in the coma she needed to be put on the ventilator because she would not be able to breath on her own..once she woke up (which took at least 2 weeks) she was able to come off the ventilator and then took a good couple weeks to get her to be more alert....she is now doing better and everyday she gets stronger and stronger....she is still having seizure activity in her brain but it seems to be localized for now and not spreading and making any clinical seizures that we can see...she is not at her normal baseline yet (50% maybe) but we are hoping that she will continue to get better everyday...she is smiling and using her hands more which is huge..her head control is coming along but she has not been able to sit up on her own for about 2 months now.
Kaden....
Oh my gosh where do i begin...he has been sick sick sick too......he started out with a cold that turned to pneumonia that then landed him in emergency...he was so sick that he landed in ICU on a bi pap machine to help him breath...he was there for about a week then got sent to the monitored room on the ward....he was then transferred up to a different ward as he was doing very well...that Sunday i was coming to the hospital to tell them we wanted to break him free from prison..(haha I call this place prison..i wonder why... :)) BUT...as luck would have it our lil guy who has been seizure free for about 15 months....started having them too!!!!!!!!!!!!! Well he was then taken to ICU where he too was hooked to an EEG only to discover that he was having massive amounts of sub-clinical seizured too!!! By this time I think we had totally lost our minds...Kaden was then placed into a medically induced coma... the plan was to not put him under as much as Elle was and he had a different plan...he may have been even more under in the end...he was on the ventilator for 27 days and I thought that tube was never going to come out!!!!!!!!!! He had various issue while in his coma. He retained massive amounts of fluid on his body and had to be put on lasix to try and get if off his body. He stopped peeing and at one point we were thinking he may have to be put on dialysis!! Anyways over night that night he lost huge amounts of fluid off his body and he lost 6cm off his lil (well big) belly....he was also having sum problems with his blood pressure. He had many IV lines in (same with Elle) and unfortunately his port a cath got very infected and they had to take it out. He became septic (infection in his blood) as a result of that he is now loosing his hair!!!!!!! AAAAHHHHHH NOT THE HAIR!!!!!!!! ya so now Im in mourning with the loss of his fabulous head of hair....
As of today they are both in the same room in the monitored room on the ward...now isn't that cozy!!?? well it is kinda but only because we kinda consider it our second home away from home ... how sad is that??
Elle continues to require alot of suctioning as her cough is very weak still but I'm hoping that will improve in the near future...as for school...and respite those are all things that we are going to have to revisit as what we have at this time is not acceptable in our eyes...
Kaden had a few small seizures the other day but seems at this point to be doing well...smiling and cooing and looking handsome.....
The biggest news right now is that Paul has a trip planned for the 24th to head to San Diego and we have decided that I should go too!!!!!!!!!!!!!!!!!!!YIPEEEEEE!!!!!! So Elle and Kaden will be surrounded in people who love them while we are gone...so we feel that its a safe time for us to go away.....
This may be one big lump of info but if it doesn't make sense to anyone please ask we would be more than happy to answer any questions....
Id also just like to thank a few people as making phone calls can be abit hard when we are at the hospital alot. Thanks to Lorraine and Glen for all the many suppers u have sent over, Thelma for what you sent over, Priscilla and Jack for the book and the visit to the hospital, Angie and family for the sweet notes and gifts for the kiddies, and Shawn and Angie for having us over for dinner.
Joy and Larry for bringing supper to the hospital....Darren for the many hours spent at the hospital with us and everyone else that has taken time outta their busy lives to visit us at the hospital.
A very special thank you to our family members for all the many many hours of support to Paul and I and more importantly our kids....The grandparents and our siblings have been there for us in sooo many ways we cant even begin to repay you for all your efforts....you know who you are and we don't know what we would do without you all....The past two months have been truly one of the worst times in our lives with many new adventures and new people brought into our lives that we never expected to meet. Its been hard to face some of the new things and think about some things we never wanted to face. We love you all very much and thank you again!!!
Ill have to post some pictures when i get home tonight....
Elle...she is doing well these days...she is in the monitored room at Children's Hospital. Her events over the last two months are as follows...
She got a very bad pneumonia which landed her in hospital. She under went sum treatments to help her breathing..was put on steroids and after about a week was ok to come home. The steroids however caused her to not sleep for over 4 days. Upon bringing her home she was still not sleeping and after being home for two days she started having seizures. The night of her seizures she was very uncomfortable and we honestly thought that she was going to die. She stopped breathing many times and Paul and I both had to resuscitate her before the ambulance arrived...she continued to seizure while they were there and she actually had to be resuscitated all the way to the hospital....very scary for everyone....she was placed in ICU. She was watched for a few days then transferred to the monitored room on the ward. They then hooked her up to an EEG and that is where we discovered she was having massive amounts of sub-clinical seizures that we were not able to see. She was whisked up to ICU and they then started the process of placing her into a medical induced coma....that was a long process to get her where they wanted her to be as far as being in a coma. She eventually got there and then we discovered that she was kinda put under too far so that made coming outta the coma take longer!! While in the coma she needed to be put on the ventilator because she would not be able to breath on her own..once she woke up (which took at least 2 weeks) she was able to come off the ventilator and then took a good couple weeks to get her to be more alert....she is now doing better and everyday she gets stronger and stronger....she is still having seizure activity in her brain but it seems to be localized for now and not spreading and making any clinical seizures that we can see...she is not at her normal baseline yet (50% maybe) but we are hoping that she will continue to get better everyday...she is smiling and using her hands more which is huge..her head control is coming along but she has not been able to sit up on her own for about 2 months now.
Kaden....
Oh my gosh where do i begin...he has been sick sick sick too......he started out with a cold that turned to pneumonia that then landed him in emergency...he was so sick that he landed in ICU on a bi pap machine to help him breath...he was there for about a week then got sent to the monitored room on the ward....he was then transferred up to a different ward as he was doing very well...that Sunday i was coming to the hospital to tell them we wanted to break him free from prison..(haha I call this place prison..i wonder why... :)) BUT...as luck would have it our lil guy who has been seizure free for about 15 months....started having them too!!!!!!!!!!!!! Well he was then taken to ICU where he too was hooked to an EEG only to discover that he was having massive amounts of sub-clinical seizured too!!! By this time I think we had totally lost our minds...Kaden was then placed into a medically induced coma... the plan was to not put him under as much as Elle was and he had a different plan...he may have been even more under in the end...he was on the ventilator for 27 days and I thought that tube was never going to come out!!!!!!!!!! He had various issue while in his coma. He retained massive amounts of fluid on his body and had to be put on lasix to try and get if off his body. He stopped peeing and at one point we were thinking he may have to be put on dialysis!! Anyways over night that night he lost huge amounts of fluid off his body and he lost 6cm off his lil (well big) belly....he was also having sum problems with his blood pressure. He had many IV lines in (same with Elle) and unfortunately his port a cath got very infected and they had to take it out. He became septic (infection in his blood) as a result of that he is now loosing his hair!!!!!!! AAAAHHHHHH NOT THE HAIR!!!!!!!! ya so now Im in mourning with the loss of his fabulous head of hair....
As of today they are both in the same room in the monitored room on the ward...now isn't that cozy!!?? well it is kinda but only because we kinda consider it our second home away from home ... how sad is that??
Elle continues to require alot of suctioning as her cough is very weak still but I'm hoping that will improve in the near future...as for school...and respite those are all things that we are going to have to revisit as what we have at this time is not acceptable in our eyes...
Kaden had a few small seizures the other day but seems at this point to be doing well...smiling and cooing and looking handsome.....
The biggest news right now is that Paul has a trip planned for the 24th to head to San Diego and we have decided that I should go too!!!!!!!!!!!!!!!!!!!YIPEEEEEE!!!!!! So Elle and Kaden will be surrounded in people who love them while we are gone...so we feel that its a safe time for us to go away.....
This may be one big lump of info but if it doesn't make sense to anyone please ask we would be more than happy to answer any questions....
Id also just like to thank a few people as making phone calls can be abit hard when we are at the hospital alot. Thanks to Lorraine and Glen for all the many suppers u have sent over, Thelma for what you sent over, Priscilla and Jack for the book and the visit to the hospital, Angie and family for the sweet notes and gifts for the kiddies, and Shawn and Angie for having us over for dinner.
Joy and Larry for bringing supper to the hospital....Darren for the many hours spent at the hospital with us and everyone else that has taken time outta their busy lives to visit us at the hospital.
A very special thank you to our family members for all the many many hours of support to Paul and I and more importantly our kids....The grandparents and our siblings have been there for us in sooo many ways we cant even begin to repay you for all your efforts....you know who you are and we don't know what we would do without you all....The past two months have been truly one of the worst times in our lives with many new adventures and new people brought into our lives that we never expected to meet. Its been hard to face some of the new things and think about some things we never wanted to face. We love you all very much and thank you again!!!
Ill have to post some pictures when i get home tonight....
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