Wednesday, June 15, 2011
The BIG MOVE!!!!
The projection was for us to come to Tampa General Hospital at about two weeks from his surgery date which was June 7th. On Monday June 13th the Neuro team came by for their rounds like normal...the first time For Dr. Tuite (the Doctor who performed his surgery), he was surprised on how far Cameron had come with his healing after his surgery. He said that they where ready to release Cameron to Tampa General ...I was thinking that this was going to take a couple of days to coordinate...With making sure there was a bed at TGH, labs that they would have to run, another MRI before leaving ...blah blah blah..
we where told at around 10 that TGH had a bed open and that the transfer was going to happen on the same day later in the afternoon.
All the test that needed to be run got done....
I don't remember if I have mentioned this earlier in our blog how we have adopted the All Childrens ambulance transport team into our family....Cameron originally was transported to the hospital closest to our house in Tarpon Springs. Well they needed to get Cameron to All Childrens quickly...When the transport team came into to Helen Ellis to get our baby, they where like Angels walking in I had this huge weight lifted off my shoulders....I just can't express the relief...They just made us feel so at ease with the way they cared for our baby and how they explained everything ...in the transport they had me sit in the front and all the advice in what things we should do when we get there to better organize our selves with our stay....
No-one could have predicted that Cameron was going to have emergency brain surgery 3 to 4 hours after they dropped us off... this team came by to check on us and found out his status...they cried with us and supported us through all the things we went through. This team came by every chance they could to check on Cameron and us....they sat with our family and friends in the waiting rooms ...words just can not express all that they mean to us...We have decided that they have become apart of our family...we will be quizing them later on the names of the 17 kids....
It was wonderful that we where able to get to TGH in less then a week after his surgery....It was just over the top that Cameron got Transported to TGH with the same crew that got him to All Childrens Hospital...the joke was the Cameron was a lot more mouthy than the last trip....
Tampa General is boot camp for Cameron he will no less then three hours of therapy a day Monday thru Friday. I'm not sure how things will go on Saturday and Sunday...I believe he will have therapy maybe not the full three hours aday.
Cameron continues to surprise us with a new tricks daily. When the transport team came to get Cameron on Monday he moved himself from the hospital bed to the stretcher and then from the stretcher back to the hospital bed when we got to TGH. When he does these this it is not gracefull...but he did it on his own slowly....
On Tuesday June 15th, at Tampa General a Doctor came in to look at Camerons Pressure wounds he got from when he was in coma....Cameron rolled to his rght side and put his legs over the side of the bed and pushed himself up. Cameron had been practicing this in his therapy sessions but never has done it on his own with out step by step directions on what to do and assistance from others....This was amazing...I had to explain to the doctor here at TGH that this was new for Cameron that he had not done this on his own ever....
Thank you again for all the thoughts and prayers!!!!
we where told at around 10 that TGH had a bed open and that the transfer was going to happen on the same day later in the afternoon.
All the test that needed to be run got done....
I don't remember if I have mentioned this earlier in our blog how we have adopted the All Childrens ambulance transport team into our family....Cameron originally was transported to the hospital closest to our house in Tarpon Springs. Well they needed to get Cameron to All Childrens quickly...When the transport team came into to Helen Ellis to get our baby, they where like Angels walking in I had this huge weight lifted off my shoulders....I just can't express the relief...They just made us feel so at ease with the way they cared for our baby and how they explained everything ...in the transport they had me sit in the front and all the advice in what things we should do when we get there to better organize our selves with our stay....
No-one could have predicted that Cameron was going to have emergency brain surgery 3 to 4 hours after they dropped us off... this team came by to check on us and found out his status...they cried with us and supported us through all the things we went through. This team came by every chance they could to check on Cameron and us....they sat with our family and friends in the waiting rooms ...words just can not express all that they mean to us...We have decided that they have become apart of our family...we will be quizing them later on the names of the 17 kids....
It was wonderful that we where able to get to TGH in less then a week after his surgery....It was just over the top that Cameron got Transported to TGH with the same crew that got him to All Childrens Hospital...the joke was the Cameron was a lot more mouthy than the last trip....
Tampa General is boot camp for Cameron he will no less then three hours of therapy a day Monday thru Friday. I'm not sure how things will go on Saturday and Sunday...I believe he will have therapy maybe not the full three hours aday.
Cameron continues to surprise us with a new tricks daily. When the transport team came to get Cameron on Monday he moved himself from the hospital bed to the stretcher and then from the stretcher back to the hospital bed when we got to TGH. When he does these this it is not gracefull...but he did it on his own slowly....
On Tuesday June 15th, at Tampa General a Doctor came in to look at Camerons Pressure wounds he got from when he was in coma....Cameron rolled to his rght side and put his legs over the side of the bed and pushed himself up. Cameron had been practicing this in his therapy sessions but never has done it on his own with out step by step directions on what to do and assistance from others....This was amazing...I had to explain to the doctor here at TGH that this was new for Cameron that he had not done this on his own ever....
Thank you again for all the thoughts and prayers!!!!
Sunday, June 12, 2011
Cameron was moved out of the ICU on Thursday and onto the seventh floor.
Cameron had an MRI on Wednesday and everything was fine with his swelling. He also had an x-ray on his head....he has lots of metal holding his skull together......
Cameron continues with a low fat diet because of his pancreatitus. The labs they run for this are starting to look better. It will be nice when this clears up because his menu will expand and we can get more meat on his bones. Cameron had lost just over ten pounds while he has been in here.
Neuro surgical team wants Cameron out of his bed at least three times a day for an hour each time.
Cameron has caught up to or passed where he was before his surgery on all his progresses he has made....
We had Cameron in his wheel chair today and went outside by the hospitals garden for a little bit today.
This is the first time in over six weeks Cameron has out in the sunlight.....
Cameron had an MRI on Wednesday and everything was fine with his swelling. He also had an x-ray on his head....he has lots of metal holding his skull together......
Cameron continues with a low fat diet because of his pancreatitus. The labs they run for this are starting to look better. It will be nice when this clears up because his menu will expand and we can get more meat on his bones. Cameron had lost just over ten pounds while he has been in here.
Neuro surgical team wants Cameron out of his bed at least three times a day for an hour each time.
Cameron has caught up to or passed where he was before his surgery on all his progresses he has made....
We had Cameron in his wheel chair today and went outside by the hospitals garden for a little bit today.
This is the first time in over six weeks Cameron has out in the sunlight.....
Tuesday, June 7, 2011
Well Cameron had his surgery to have his skull put back in today...and there were concerns from our perspective...we really had just felt that Cameron had been through so much over the coarse of five weeks and four days.
Doctor Tuite would have liked for Cameron to have waited for about three months for this surgery. Maybe by then he would have had a little more weight on his bones, his pancreatitus would have been gone, his red blood cell count to be higher, and for Cameron not to have the pressure wounds on the back of his head as a source of infection, maybe his blood clot to have been gone and off of blood thinners, maybe just maybe Cameron would be off of his heart medicines.....
But the fact that Cameron was doing better then anyone in this situation had ever done. (This means he SURVIVED!!!) Dr. Tuite and all the other doctors on his case felt that he would get so much more out of rehab if he didn't have to come back for another surgery....They also talked this over with the head rehab doctor over at Tampa General. Dr Tuite thought that maybe Cameron wouldn't get pushed as hard as needed with his skull missing. This is something we new would have to happen..that this is a good thing and part of what needed to happen to get Cameron better and home with his family. It just can be hard when they change the path that you thought you were taking
Everything went well with the surgery as well as it could go. He was complaining alot which is very good...according to the staff here.
We are back in the ICU and we have had all kinds of visitors ....mostly from all Cameron's past nurses and ICU doctors...they all just love him and are enjoying seeing him awake and doing so well.
Cameron had a good dinner tonight and hopefully we will all get a good nights sleep.
Thank you all that kept us in your thoughts and prayers!!!
Doctor Tuite would have liked for Cameron to have waited for about three months for this surgery. Maybe by then he would have had a little more weight on his bones, his pancreatitus would have been gone, his red blood cell count to be higher, and for Cameron not to have the pressure wounds on the back of his head as a source of infection, maybe his blood clot to have been gone and off of blood thinners, maybe just maybe Cameron would be off of his heart medicines.....
But the fact that Cameron was doing better then anyone in this situation had ever done. (This means he SURVIVED!!!) Dr. Tuite and all the other doctors on his case felt that he would get so much more out of rehab if he didn't have to come back for another surgery....They also talked this over with the head rehab doctor over at Tampa General. Dr Tuite thought that maybe Cameron wouldn't get pushed as hard as needed with his skull missing. This is something we new would have to happen..that this is a good thing and part of what needed to happen to get Cameron better and home with his family. It just can be hard when they change the path that you thought you were taking
Everything went well with the surgery as well as it could go. He was complaining alot which is very good...according to the staff here.
We are back in the ICU and we have had all kinds of visitors ....mostly from all Cameron's past nurses and ICU doctors...they all just love him and are enjoying seeing him awake and doing so well.
Cameron had a good dinner tonight and hopefully we will all get a good nights sleep.
Thank you all that kept us in your thoughts and prayers!!!
Monday, June 6, 2011
Sunday Cameron had physical Therapy ....during this therapy session the therapist decided to try to have Cameron stand. Cameron had the help of J.P. and the therapist to do this. They said they hardly helped him up that it was mostly Cameron pushing up on his own. Cameron's brother's and sister where there to see this along with Aunt Danielle and Uncle Kayton...this was very emotional for all of us to be apart of. Cameron still does not have balance or the coordination to do this on his own but he is building his strength which is just amazing!!!
I think Lauren said it best....on a face book post
I think Lauren said it best....on a face book post
Sunday, June 5, 2011
I'm sorry that I haven't posted an update recently. Thankfully Cameron continues to get a little stonger everyday ...
Cameron had an echo done on Monday, His heart is up to 66%. His Cardiomyopathy has not made huge improvements in the past week, but this will take a longer period of time to heal....
Cameron still has the Pancreatitus, but what ever numbers they follow on this has come down in the past couple of tests that have run. This is good so they didn't have to perform the CT scan.
They decided to perform his swallow study on Thursday. This went well the plan was to go ahead to put the NG tube in (feeding tube through nose). Cameron would be able to eat starting with a low fat diet. At the same time give Cameron something like a Pedi-sure through his NG tube. They thought it would take Cameron a little while to be able to consume enough calories on his own by mouth.
They put the NG tube in Thusday night and I would talk to him about why this was in his nose and I thought he understood. Then he would forget what we talked about or he would have very strong erdge to itch it or take it out ..Needless to say he had to have this put in a couple of times because he kept taking it out.
They decided Friday morning not to put the NG tube in a third time. The doctors decided to give Cameron a chance to eat and start building up his appetite, and still continue the TPN through IV until Cameron was eating and drinking enough calories on his own. They hoped that Cameron would be eating and drinking enough for the I-V to be tapered off by this Tuesday.
Well today Cameron is already completely off of his I-V fluids.
Cameron has gone to the gym for physical therapy for a couple of days this week. It's nice for us to get out of our room for the hour or so a day...
It is very hard to watch your son who has always been a healthy athletic boy, be so dependant on so many for help with every movement.
On Tuesday they had Cameron roll side to side on a matt...Cameron had to sit straight up and practice reaching for objects on the right and placing them to the left of him. The therapist are still having to help him with any major movements that require core and balance. there are two therapist that work with him at once because Cameron's muscles and movements are so limited.....
Wednesday they repeated the sitting up straight and reaching from right to left. After that they have Cameron lay on his back and rolled him to his stomach. They had a pillow under his chest so that his head was elevated a little. This was very hard to do physically and emotionally. This reminded me of watching an infant trying to raise his head while laying on his belly...cameron does not have strength to raise his head or enough strength in his to arms push himslef up.
Thursday, Friday, and Saturday they have put Cameron on a table that straps him to it, it has a board under his feet that and then it slowly moves him to a standing position. This is very hard for Cameron todo. This really stretches his legs....
Up until this weekend Cameron didn't know everything that has happened to him yet. I think Cameron remembers the week leading up to him coming to the hospital. We have only explained to him that he got very sick and that he was asleep for little over two weeks to try to get him well.... IF you ask him how he is? he will answer, " not too well." We assure him that he is getting better everyday.
When we explain how much time has gone by or that he is 12 years old and his birthday has passed he gets very emotional....
We go through this a couple of times a day everyday......
The child life counselor has made a board game and a calander all about Cameron's hospital stay and all the things that have happened to him while he has been here. This helps tell the story to Cameron and helps trigger questions that Cameron may have for us to answer about what is going on with him.
The doctors say that they are planning on us going to Tampa General Hospital on Tuesday of this week.
We are excited for Cameron to have intense therapy for his recovery, at the same time a little nervous for what may come.
Cameron had an echo done on Monday, His heart is up to 66%. His Cardiomyopathy has not made huge improvements in the past week, but this will take a longer period of time to heal....
Cameron still has the Pancreatitus, but what ever numbers they follow on this has come down in the past couple of tests that have run. This is good so they didn't have to perform the CT scan.
They decided to perform his swallow study on Thursday. This went well the plan was to go ahead to put the NG tube in (feeding tube through nose). Cameron would be able to eat starting with a low fat diet. At the same time give Cameron something like a Pedi-sure through his NG tube. They thought it would take Cameron a little while to be able to consume enough calories on his own by mouth.
They put the NG tube in Thusday night and I would talk to him about why this was in his nose and I thought he understood. Then he would forget what we talked about or he would have very strong erdge to itch it or take it out ..Needless to say he had to have this put in a couple of times because he kept taking it out.
They decided Friday morning not to put the NG tube in a third time. The doctors decided to give Cameron a chance to eat and start building up his appetite, and still continue the TPN through IV until Cameron was eating and drinking enough calories on his own. They hoped that Cameron would be eating and drinking enough for the I-V to be tapered off by this Tuesday.
Well today Cameron is already completely off of his I-V fluids.
Cameron has gone to the gym for physical therapy for a couple of days this week. It's nice for us to get out of our room for the hour or so a day...
It is very hard to watch your son who has always been a healthy athletic boy, be so dependant on so many for help with every movement.
On Tuesday they had Cameron roll side to side on a matt...Cameron had to sit straight up and practice reaching for objects on the right and placing them to the left of him. The therapist are still having to help him with any major movements that require core and balance. there are two therapist that work with him at once because Cameron's muscles and movements are so limited.....
Wednesday they repeated the sitting up straight and reaching from right to left. After that they have Cameron lay on his back and rolled him to his stomach. They had a pillow under his chest so that his head was elevated a little. This was very hard to do physically and emotionally. This reminded me of watching an infant trying to raise his head while laying on his belly...cameron does not have strength to raise his head or enough strength in his to arms push himslef up.
Thursday, Friday, and Saturday they have put Cameron on a table that straps him to it, it has a board under his feet that and then it slowly moves him to a standing position. This is very hard for Cameron todo. This really stretches his legs....
Up until this weekend Cameron didn't know everything that has happened to him yet. I think Cameron remembers the week leading up to him coming to the hospital. We have only explained to him that he got very sick and that he was asleep for little over two weeks to try to get him well.... IF you ask him how he is? he will answer, " not too well." We assure him that he is getting better everyday.
When we explain how much time has gone by or that he is 12 years old and his birthday has passed he gets very emotional....
We go through this a couple of times a day everyday......
The child life counselor has made a board game and a calander all about Cameron's hospital stay and all the things that have happened to him while he has been here. This helps tell the story to Cameron and helps trigger questions that Cameron may have for us to answer about what is going on with him.
The doctors say that they are planning on us going to Tampa General Hospital on Tuesday of this week.
We are excited for Cameron to have intense therapy for his recovery, at the same time a little nervous for what may come.
Monday, May 30, 2011
05-30-2011
Cameron continues to do a little better everyday.
His new favorite pass time is to shoot whoever is in the room with his Nerf guns. He has been busy this weekend playing Uno with his brothers and sister.....
Cameron is doing well out of the ICU, however we do miss all the nurses and staff down there.
They are now checking his vitals every eight hours..this started as every hour , then back to two hours, and then to four hours and finally every eight...Respiratory therapy was cut from every four hours to an as needed basis. These are all awesome things because Cameron is able to get more rest and it is all signs that Cameron is getting better.
Cameron still has the Pancreatitus and it will probably get a CT done on it this week if the numbers don't look better. The blood work they took to check on Cameron's liver looked fine.
Cameron still does not have a NG tube and continues to get TPN through his IV(this is how he eats). Cameron has adjusted to getting his meds mixed in his pudding okay.
Today during Physical therapy they got him into a wheel chair. This was a nice change for Cameron they wheeled him around with his Nerf gun in Hand. Tomorrow they said they would take him to the Physical therapy gym.
The physical therpist said that on their end he is a ready for Tampa General Hospital. The two things holding him up is the pancreatitus and the bllod clot that he has.
We believe that we will be moved from All Children's to Tampa General Hospital in the next couple of weeks. This is were the best children's rehabilitation center is located. They are projecting that Cameron will need to be there for two to three months. Then after that he will have out patient rehabilitation. Cameron continues to make progress daily, and we are thankful for each step he takes.
His new favorite pass time is to shoot whoever is in the room with his Nerf guns. He has been busy this weekend playing Uno with his brothers and sister.....
Cameron is doing well out of the ICU, however we do miss all the nurses and staff down there.
They are now checking his vitals every eight hours..this started as every hour , then back to two hours, and then to four hours and finally every eight...Respiratory therapy was cut from every four hours to an as needed basis. These are all awesome things because Cameron is able to get more rest and it is all signs that Cameron is getting better.
Cameron still has the Pancreatitus and it will probably get a CT done on it this week if the numbers don't look better. The blood work they took to check on Cameron's liver looked fine.
Cameron still does not have a NG tube and continues to get TPN through his IV(this is how he eats). Cameron has adjusted to getting his meds mixed in his pudding okay.
Today during Physical therapy they got him into a wheel chair. This was a nice change for Cameron they wheeled him around with his Nerf gun in Hand. Tomorrow they said they would take him to the Physical therapy gym.
The physical therpist said that on their end he is a ready for Tampa General Hospital. The two things holding him up is the pancreatitus and the bllod clot that he has.
We believe that we will be moved from All Children's to Tampa General Hospital in the next couple of weeks. This is were the best children's rehabilitation center is located. They are projecting that Cameron will need to be there for two to three months. Then after that he will have out patient rehabilitation. Cameron continues to make progress daily, and we are thankful for each step he takes.
Friday, May 27, 2011
Wednesday 5-25-11
Cameron was busy today with all of his normal speech therapy, and respiratory therapy.
During speech the therapist brought Cameron breakfeast, eggs and bisquits with honey.
Cameron just had a couple of smalllllll bites of each but seemed to do ok with it.
They decided to go ahead and have Cameron do a swallow study...Since early in the morning he decided to pull out his NG tube again....(I notice that he is successful in doing this when J.P. is sitting with him and I'm not there......)
This is where they give him different consistancies of food for him to swallow....they gave him pasta, bread, apple sauce, ice cream and juice. They do this while x-raying him on video. They study the video to make sure that he closes his airway while swallowing.
It was exhaustng for Cameron just to get to the room that they had to perform this in. They had to put him on a special chair...that was not comfortable if you could move yourself around...it was horrible for Cameron. He has to have somebody support his head, back, and his limbs....this chair had no sides and had to be X-ray friendly.
Cameron did okay on swallowing things like apple sauce, pudding or yogurt. He is not okay swallowing liquids apparently the timing for liquids is harder then the pure consistancy.
For now Cameron does not have his NG tube back in. They switched all of his medicines to pills. They crush the pills and put them in either applesauce or pudding. He then has to eat them in just a couple of bites.
(For me it was easier for it to go thru the NG tube because it could be done while he was sleeping or anything...) Now we have to coax him into taking the bites....this is not easily done.
Cameron still has pancreatitus and because of this he still can not eat...by way of food or NG tube. He is being fed stil by TPN. It's been about two weeks that we have had this diagnosis. The GI doctors are going to run some blood work on his liver to make sure everything is ok. ( these two organs work together)
Thursday 5-26-11
Well we are officially out of the ICU!!!!!!!!!! We have MOVED up to the 8th floor this afternoon.
Cameron had fun during speech therapy this morning, he played UNO and I spy after he did his special word exercises....
They had Cameron sit on the edge of his bed during physical and occupational therapy. Cameron needs the practice still to try to sit up and gain head control. Each day we notice he is able to tolerate this little longer then the day before.
Aunt Kim came up to sit with Cameron yesterday, while I went to a school function. This was the first time that we (either dad, J.P. or myself) have left him all at once. Cameron had fun shooting the nerf dart guns that Aunt Kim got him for his birthday. They had Mema and Pop pop keep them company for a little bit.
Cameron didn't end up sleeping too much...maybe three hours.....which meant I got about the same amount...
Cameron was busy today with all of his normal speech therapy, and respiratory therapy.
During speech the therapist brought Cameron breakfeast, eggs and bisquits with honey.
Cameron just had a couple of smalllllll bites of each but seemed to do ok with it.
They decided to go ahead and have Cameron do a swallow study...Since early in the morning he decided to pull out his NG tube again....(I notice that he is successful in doing this when J.P. is sitting with him and I'm not there......)
This is where they give him different consistancies of food for him to swallow....they gave him pasta, bread, apple sauce, ice cream and juice. They do this while x-raying him on video. They study the video to make sure that he closes his airway while swallowing.
It was exhaustng for Cameron just to get to the room that they had to perform this in. They had to put him on a special chair...that was not comfortable if you could move yourself around...it was horrible for Cameron. He has to have somebody support his head, back, and his limbs....this chair had no sides and had to be X-ray friendly.
Cameron did okay on swallowing things like apple sauce, pudding or yogurt. He is not okay swallowing liquids apparently the timing for liquids is harder then the pure consistancy.
For now Cameron does not have his NG tube back in. They switched all of his medicines to pills. They crush the pills and put them in either applesauce or pudding. He then has to eat them in just a couple of bites.
(For me it was easier for it to go thru the NG tube because it could be done while he was sleeping or anything...) Now we have to coax him into taking the bites....this is not easily done.
Cameron still has pancreatitus and because of this he still can not eat...by way of food or NG tube. He is being fed stil by TPN. It's been about two weeks that we have had this diagnosis. The GI doctors are going to run some blood work on his liver to make sure everything is ok. ( these two organs work together)
Thursday 5-26-11
Well we are officially out of the ICU!!!!!!!!!! We have MOVED up to the 8th floor this afternoon.
Cameron had fun during speech therapy this morning, he played UNO and I spy after he did his special word exercises....
They had Cameron sit on the edge of his bed during physical and occupational therapy. Cameron needs the practice still to try to sit up and gain head control. Each day we notice he is able to tolerate this little longer then the day before.
Aunt Kim came up to sit with Cameron yesterday, while I went to a school function. This was the first time that we (either dad, J.P. or myself) have left him all at once. Cameron had fun shooting the nerf dart guns that Aunt Kim got him for his birthday. They had Mema and Pop pop keep them company for a little bit.
Cameron didn't end up sleeping too much...maybe three hours.....which meant I got about the same amount...
Wednesday, May 25, 2011
Sunday 05-22-11
Cameron was busy Sunday morning he pulled his NG tube and his nose trumpet....They did put the NG tube back. The speech therapist came in and had him try some more ice chips, and then moved on to having Cameron try some apple juice, he didn't do so well the first time it went down his airway. A little while later during therapy he tried it again and did ok with it.
Later in the day I asked him how the apple juice was he said he didn't like it and he spit it out on purpose. Cameron had a very long nap on Sunday and didn't end up sleeping very soundly during the night.
Monday 05-23-11
Wow what accomplishments he had today....Cameron's nurse was on a mission for him to sit in a chair and she did it first thing in the morning. It took THREE people to do this. The nurse had to hold Cameron like an over sized infant. It was so hard to watch Camerons head lay on her sholder because he didn't have control of it. He sat in the chair for about ten minutes, that was all that he could handle.
Cameron was able to get a good nap in and then he had physical therapy, occupational therapy, and speech therapy all at once in the afternoon. Cameron was able to try a popsicle, juice and gatorade today, they thickened the gatorade (they made almost like a pudding consistency) to make it easier for Cameron to swallow.
He is still getting respiratory therapy about every four hours. He really doesn't care for this they still pat hard on his chest for him to loosen the flem up in his chest. This is helpful for when he coughs and each day and is getting stronger.
The cardioologist came by after they performed his echo on his heart. Cameron's heart is up to 55% and the Cardiomyopathy seemed to be getting a little better.
Cameron still has pancreatitus and still is not getting fed through his NG tube. He is still getting TPN (total parental nutritionthrough his IV.
Tuesday 05-24-11
Cameron slept really well Monday night from 10:30 P.M. to 4:00 A.M. After that he was dosing off and on.
During Cameron's physical therapy they moved him to the edge of the bed to perform some leg exercises off the edge like kicking. The occupational therapist held Cameron up from behind. They positioned cameron's arms to the side so that he would know how to hold himself up and balance himself. Let me be clear Cameron has no strength to do anything on his own he is always assisted by the hospital staff.
During speech therapy Cameron drank some apple juice and tried some jello. They converted his bed to a chair positition to change things for him a little...
Cameron continues to get Respratory therapy every four hours wether he likes it or not
Cameron's speech is getting better and louder. After having the breathing tube he just didn't have the muscles to project so that we could hear him....
Cameron is getting a little better everyday, they are small steps which is great as long as they go in the rite direction...
Thank you for keeping us in your prayers.
Cameron was busy Sunday morning he pulled his NG tube and his nose trumpet....They did put the NG tube back. The speech therapist came in and had him try some more ice chips, and then moved on to having Cameron try some apple juice, he didn't do so well the first time it went down his airway. A little while later during therapy he tried it again and did ok with it.
Later in the day I asked him how the apple juice was he said he didn't like it and he spit it out on purpose. Cameron had a very long nap on Sunday and didn't end up sleeping very soundly during the night.
Monday 05-23-11
Wow what accomplishments he had today....Cameron's nurse was on a mission for him to sit in a chair and she did it first thing in the morning. It took THREE people to do this. The nurse had to hold Cameron like an over sized infant. It was so hard to watch Camerons head lay on her sholder because he didn't have control of it. He sat in the chair for about ten minutes, that was all that he could handle.
Cameron was able to get a good nap in and then he had physical therapy, occupational therapy, and speech therapy all at once in the afternoon. Cameron was able to try a popsicle, juice and gatorade today, they thickened the gatorade (they made almost like a pudding consistency) to make it easier for Cameron to swallow.
He is still getting respiratory therapy about every four hours. He really doesn't care for this they still pat hard on his chest for him to loosen the flem up in his chest. This is helpful for when he coughs and each day and is getting stronger.
The cardioologist came by after they performed his echo on his heart. Cameron's heart is up to 55% and the Cardiomyopathy seemed to be getting a little better.
Cameron still has pancreatitus and still is not getting fed through his NG tube. He is still getting TPN (total parental nutritionthrough his IV.
Tuesday 05-24-11
Cameron slept really well Monday night from 10:30 P.M. to 4:00 A.M. After that he was dosing off and on.
During Cameron's physical therapy they moved him to the edge of the bed to perform some leg exercises off the edge like kicking. The occupational therapist held Cameron up from behind. They positioned cameron's arms to the side so that he would know how to hold himself up and balance himself. Let me be clear Cameron has no strength to do anything on his own he is always assisted by the hospital staff.
During speech therapy Cameron drank some apple juice and tried some jello. They converted his bed to a chair positition to change things for him a little...
Cameron continues to get Respratory therapy every four hours wether he likes it or not
Cameron's speech is getting better and louder. After having the breathing tube he just didn't have the muscles to project so that we could hear him....
Cameron is getting a little better everyday, they are small steps which is great as long as they go in the rite direction...
Thank you for keeping us in your prayers.
Sunday, May 22, 2011
05-21-2011
Thursday May 19th. We asked for there not to be any visitors for Cameron we wanted him to have very low to no stimulation. J.P. and I had to really monitor how Cameron was getting suctioning done by his nurses and his respiratory therapist. Some got a little offended and said that they have been doing this along time...we kindly informed them that we understand that but this was the first time working on our son and made them listen to the brief medical history on Cameron....
Cameron had his last sub clinical seizure on Thursday at 12:30 P.M. The Neurologist saw some activity on the EEG but not anything for long period of times and Cameron is ways responsive before, during and after. The Neurologist has adjusted Cameron's seizure medicines.
The cardiologist had another echo done and his heart is back down to 50% But this was okay for Cameron's cardio team because they have taken him off all heart medicines. Cameron's left ventricle was working at 50% all by its self!! and this should improve with time.
A couple of days ago they did discover that Cameron has Cardiomyopathy and on this echo this seemed to improve as well.
The cardio team wanted to check to see if Cameron's twin, Tyler has this same condition. They wanted to see if they were born with it. Tyler had an Echo on Wednesday and thankfully Tyler does not have it. So the cardiologist thinks that Cameron got this heart condition from all the stress on his heart from this ...virus.
Friday May 20th. We still limited visitors for Cameron. The Neurologist did okay for Cameron to have his physical therapy and speech therapy. Cameon got to have three ice chips during speech therapy and he loved them!!! Each day Cameron is getting a little stronger with the coughing. He tries to talk but it is very difficult to understand.
Saturday May 21st. Cameron was able to get the EEG off of his head. J.P. said that he pulled out his NG tube (feeding tube) on his own. So he had to get that placed back in. Cameron over the coarse of the past couple of days was able to be weaned off the nasal seapap machine. (this machine forced air threw his nose)
He had his physical therapy, occupational therapy, and his speech therapy. Cameron enjoyed about 8 to 10 ice chips through the day. Cameron recognized said mema and pop pop's names...
Cameron had his last sub clinical seizure on Thursday at 12:30 P.M. The Neurologist saw some activity on the EEG but not anything for long period of times and Cameron is ways responsive before, during and after. The Neurologist has adjusted Cameron's seizure medicines.
The cardiologist had another echo done and his heart is back down to 50% But this was okay for Cameron's cardio team because they have taken him off all heart medicines. Cameron's left ventricle was working at 50% all by its self!! and this should improve with time.
A couple of days ago they did discover that Cameron has Cardiomyopathy and on this echo this seemed to improve as well.
The cardio team wanted to check to see if Cameron's twin, Tyler has this same condition. They wanted to see if they were born with it. Tyler had an Echo on Wednesday and thankfully Tyler does not have it. So the cardiologist thinks that Cameron got this heart condition from all the stress on his heart from this ...virus.
Friday May 20th. We still limited visitors for Cameron. The Neurologist did okay for Cameron to have his physical therapy and speech therapy. Cameon got to have three ice chips during speech therapy and he loved them!!! Each day Cameron is getting a little stronger with the coughing. He tries to talk but it is very difficult to understand.
Saturday May 21st. Cameron was able to get the EEG off of his head. J.P. said that he pulled out his NG tube (feeding tube) on his own. So he had to get that placed back in. Cameron over the coarse of the past couple of days was able to be weaned off the nasal seapap machine. (this machine forced air threw his nose)
He had his physical therapy, occupational therapy, and his speech therapy. Cameron enjoyed about 8 to 10 ice chips through the day. Cameron recognized said mema and pop pop's names...
Wednesday, May 18, 2011
05-17-11 thru 5-18-11
Well we have hit some bumps in our journey to Cameron getting well. I believe he purposely waited for me to be completely be rehydrated to start acting up....
Cameron is still not coughing Strong enough to be able to loosen all the mucus in his throat. He just sounds terrible. I almost feel as though he is drowning in the mucus. The nurses and the respiratory therapist have to suction it out threw both his nose and his mouth. It is horrible to watch and hear.......
Cameron did have a busy day yesterday, he had physical therapy, speech therapy, and occupational therapy.
They had him sitting up in his bed, of coarse the two physical therapist had to completely hold him up it reminded me of when he was new born trying to get him to sit up.
Cameron just has not been able to sleep for the past couple of days....because of his breathing. When I watch him he takes shallow breathes and will start to Doze off , then wakes himself to take a deep breath.
I feel like Cameron has just been having a hard time since they have taken the breathing tube out. He seems to be in pain and never comfortable. It is very hard to watch this as a mother, as a step father, a sister, and as brothers.
Early this morning around 5:00 I went to get the nurse because Cameron was sounding like he was drowning in his mucus. His nurse came in to suction him and the respiratory therapist came into assist, Cameron did his normal struggle when they do this (trying to push their hands away and making his stinky face). After a bit he stopped, it appeared as though he lost consciousness, they then asked what he looks like when he has seizures. The very first of Cameron's seizures was the typical shaking limbs and foaming at the mouth. After that with all he has been through it was more likely to be the limp unconcious appearance.
Thankfully Dr. Stock was the attending early this morning.
Dr Stock was the Docor who was here in the evening that Cameron was admitted nearly three weeks ago and witnessed first hand that Cameron's seizures are not typical (Cameron has Sub Clinical Seizures that can only be seen on an EEG), that Cameron could still be seizing nuerologically.
She ordered for them to get him down immediately for the CT scan and then ordered for and EEG to be put on Cameron (the nurses were argueing that he wasn't seizing any more and didn't need a CT or EEG) . The scan appeared to be ok, they wanted to check to be sure it wasn't more damage to Cameron's brain and check for a stroke.
To our relief the CT came back negitive for Stroke or any new damage, however the EEG later that morning showed a second seizure which they quickly gave Cameron medication to help him. He came too about 2 hours later. Nodding his head, speaking with his raspy voice and squizing our hands with his. What a relief again.
Later that afternoon durning his Vitals Check they found him to have a 103 fever, once again they gave him some tylenol to help with his fever and it also went away about an hour later. Around 9:00 pm our nurse got a call from his Neurologist saying he was having Sub Clincal Seizures again (these type of seizures can only be seen on an EEG). The strange thing is he was also responsive to comands before and after the call from the doctor. So once again more medication. As of 11:00pm tonight he is once again stable and JP and I will have anther sleepless night watching his EEG and Stats.
Cameron is still not coughing Strong enough to be able to loosen all the mucus in his throat. He just sounds terrible. I almost feel as though he is drowning in the mucus. The nurses and the respiratory therapist have to suction it out threw both his nose and his mouth. It is horrible to watch and hear.......
Cameron did have a busy day yesterday, he had physical therapy, speech therapy, and occupational therapy.
They had him sitting up in his bed, of coarse the two physical therapist had to completely hold him up it reminded me of when he was new born trying to get him to sit up.
Cameron just has not been able to sleep for the past couple of days....because of his breathing. When I watch him he takes shallow breathes and will start to Doze off , then wakes himself to take a deep breath.
I feel like Cameron has just been having a hard time since they have taken the breathing tube out. He seems to be in pain and never comfortable. It is very hard to watch this as a mother, as a step father, a sister, and as brothers.
Early this morning around 5:00 I went to get the nurse because Cameron was sounding like he was drowning in his mucus. His nurse came in to suction him and the respiratory therapist came into assist, Cameron did his normal struggle when they do this (trying to push their hands away and making his stinky face). After a bit he stopped, it appeared as though he lost consciousness, they then asked what he looks like when he has seizures. The very first of Cameron's seizures was the typical shaking limbs and foaming at the mouth. After that with all he has been through it was more likely to be the limp unconcious appearance.
Thankfully Dr. Stock was the attending early this morning.
Dr Stock was the Docor who was here in the evening that Cameron was admitted nearly three weeks ago and witnessed first hand that Cameron's seizures are not typical (Cameron has Sub Clinical Seizures that can only be seen on an EEG), that Cameron could still be seizing nuerologically.
She ordered for them to get him down immediately for the CT scan and then ordered for and EEG to be put on Cameron (the nurses were argueing that he wasn't seizing any more and didn't need a CT or EEG) . The scan appeared to be ok, they wanted to check to be sure it wasn't more damage to Cameron's brain and check for a stroke.
To our relief the CT came back negitive for Stroke or any new damage, however the EEG later that morning showed a second seizure which they quickly gave Cameron medication to help him. He came too about 2 hours later. Nodding his head, speaking with his raspy voice and squizing our hands with his. What a relief again.
Later that afternoon durning his Vitals Check they found him to have a 103 fever, once again they gave him some tylenol to help with his fever and it also went away about an hour later. Around 9:00 pm our nurse got a call from his Neurologist saying he was having Sub Clincal Seizures again (these type of seizures can only be seen on an EEG). The strange thing is he was also responsive to comands before and after the call from the doctor. So once again more medication. As of 11:00pm tonight he is once again stable and JP and I will have anther sleepless night watching his EEG and Stats.
Monday, May 16, 2011
05-16-11 - From MOM
Well yesterday they took Cameron off the breathing machine. Cameron is very uncomfortable and his throat is very soar after having the tube down it for over two weeks. He needs to cough and has lots of flem to cough up but doesn't seem to want to do this because his throat is so soar. They say that it takes lots of muscles to cough and he hasn't used them in over two weeks, so this will take a few days to get used to.
The respiratory therapist comes in about every four hours to turn on the vibrating hospital bed then suction his throat, and yes a rubber tube gets shoved up his nose....yuck!
Cameron had a busy day today.....He had an Echo on his heart and his left ventricle is now up to 57% which is awesome!!!
Cameron has started with speech therapy today, which didn't seem to be anything to major for now.
They are wanting Cameron to be able to swallow normally before they start him on clear liquids.
The therapist showed me some games to play so that he can relearn this. They seemed very happy with everything that Cameron can already do...
Cameron started physcal therapy last week and this continues. I believe they will start having him sit up in his bed in the next coouple of days.
He also has pancreitus. They discovered this a couple of days ago and stopped feeding him through the NG tube ( tube threw his nose) and started back IV feeding him TPN (total parent nutrition). They say this is not abnormal and should correct itself after a couple of days. When they were following up on the pancreitus with a sonogram yesterday, they found a blood clot. The clot is near were the central line was. (one of the many I V lines Cameron had in him.) They say this isn't unusual and he is on a blood thinner and they will be monitoring this.
The Neuro sergeons are sending Cameron down for another MRI tomorrow. If everything goes well with this then they will cut back there visits down to once a week. I will miss them and how excited they get when they see Cameron and all his progress, but I know that its because of all his progress that they can reduce the visits.
Our Disease Infectious Doctor came in today to tell us that they still are not sure of what caused this.
We have lists of every test that has been done and every test so far has either been negative....or that he has antibodies for meaning he had in the past and didn't cause this...
We still have about four things (all the Encephalitis diagnosis like west nile, eastern Equine) that we are still waiting on the states results on. They say that we have about a 50% chance of even finding out what this was for sure. We know that it was nothing bacterial and that it was something viral.
I am so thankful for the nurses and doctors here at All Childrens Hospital. I know that Cameron is in the best care here.
Thank you for again for keeping our family in your thoughts and prayers.
jen
The respiratory therapist comes in about every four hours to turn on the vibrating hospital bed then suction his throat, and yes a rubber tube gets shoved up his nose....yuck!
Cameron had a busy day today.....He had an Echo on his heart and his left ventricle is now up to 57% which is awesome!!!
Cameron has started with speech therapy today, which didn't seem to be anything to major for now.
They are wanting Cameron to be able to swallow normally before they start him on clear liquids.
The therapist showed me some games to play so that he can relearn this. They seemed very happy with everything that Cameron can already do...
Cameron started physcal therapy last week and this continues. I believe they will start having him sit up in his bed in the next coouple of days.
He also has pancreitus. They discovered this a couple of days ago and stopped feeding him through the NG tube ( tube threw his nose) and started back IV feeding him TPN (total parent nutrition). They say this is not abnormal and should correct itself after a couple of days. When they were following up on the pancreitus with a sonogram yesterday, they found a blood clot. The clot is near were the central line was. (one of the many I V lines Cameron had in him.) They say this isn't unusual and he is on a blood thinner and they will be monitoring this.
The Neuro sergeons are sending Cameron down for another MRI tomorrow. If everything goes well with this then they will cut back there visits down to once a week. I will miss them and how excited they get when they see Cameron and all his progress, but I know that its because of all his progress that they can reduce the visits.
Our Disease Infectious Doctor came in today to tell us that they still are not sure of what caused this.
We have lists of every test that has been done and every test so far has either been negative....or that he has antibodies for meaning he had in the past and didn't cause this...
We still have about four things (all the Encephalitis diagnosis like west nile, eastern Equine) that we are still waiting on the states results on. They say that we have about a 50% chance of even finding out what this was for sure. We know that it was nothing bacterial and that it was something viral.
I am so thankful for the nurses and doctors here at All Childrens Hospital. I know that Cameron is in the best care here.
Thank you for again for keeping our family in your thoughts and prayers.
jen
Sunday, May 15, 2011
5-14-11/5-15-11 Update
HAPPY BIRTHDAY CAMERON & TYLER!!!
Yesterday we celebrated the twins's 12th birthday. We had lots of visitors and sugary treats to celebrate.
There wasn't too much different yesterday. Cameron is still communicating through head nods and and left eye winks. If you ask him a question thaat he is unsure of he will shrug his shoulders. So far he can tell us if he is in pain and where it's at (if we ask him through process of elimination.), how old he is, if yesterday was his birthday, if he likes this show, if the tv is too loud or quiet, if he wants us to change the channel, if he wants us to read to him, if he's tired, and anything else that requires a yes or no answer (and again, he only answers yes or no if we ask him the question, like "Cameron, is the tv too loud?" or "Cameron, do you like this show?" and "Cameron, are you in pain?... Is it your head?... Is it your arms?") He is also starting to move his arms and legs a little bit more often without stimulation (on his own) or on command (when we ask him to do so).
Today we discovered that Cameron is no longer on any antibiotics and that he has been breathing on his own, completely, since about 7 a.m. this morning. He will probably be taken off of his breathing machine either today or tomorrow and might not have to use a trech.
Tomorrow he has another Echo for his heart and we will be posting the udate for that and anyother news that occurs tomorrow.
Once again we thank EVERYONE for keeping our family in your thoughts and prayers.
Yesterday we celebrated the twins's 12th birthday. We had lots of visitors and sugary treats to celebrate.
There wasn't too much different yesterday. Cameron is still communicating through head nods and and left eye winks. If you ask him a question thaat he is unsure of he will shrug his shoulders. So far he can tell us if he is in pain and where it's at (if we ask him through process of elimination.), how old he is, if yesterday was his birthday, if he likes this show, if the tv is too loud or quiet, if he wants us to change the channel, if he wants us to read to him, if he's tired, and anything else that requires a yes or no answer (and again, he only answers yes or no if we ask him the question, like "Cameron, is the tv too loud?" or "Cameron, do you like this show?" and "Cameron, are you in pain?... Is it your head?... Is it your arms?") He is also starting to move his arms and legs a little bit more often without stimulation (on his own) or on command (when we ask him to do so).
Today we discovered that Cameron is no longer on any antibiotics and that he has been breathing on his own, completely, since about 7 a.m. this morning. He will probably be taken off of his breathing machine either today or tomorrow and might not have to use a trech.
Tomorrow he has another Echo for his heart and we will be posting the udate for that and anyother news that occurs tomorrow.
Once again we thank EVERYONE for keeping our family in your thoughts and prayers.
Saturday, May 14, 2011
5-12-11/5-13-11 Update
Well, it looks like we have some catching up to do.....
Wednesday afternoon the neuro doctors decided to put the EEG back onto Cameron's head (this is the machine that shows Cameron's brain wave patterns. there were about fifty little wires connected to his head) They decided to do this as precaution because Cameron's eyes were acting a little weird a couple of times (as mentioned in the last update). Turns out everything was fine and the EEG came off on Thursday morning.
Thursday Cameron had an MRI done. They had clamped the drain line and wanted to make sure that the fluid was being absorbed properly into his body. It was, so they were able to pull out his drain line.
Cameron's head is now clear of all drain lines and EEG cords....
Cameron also had an Echo done on his heart, we found out that his heart is now up to 50%. slowly making his way up to 70%....
Friday....Wow!!! what an amazing day!!!
Cameron was asked by Neuro Surgeons to hold up his thumb and then to hold up two fingers. He was able to accomplish both!!!
Later in the day Cameron's nurse, Sheryl noticed that he really seemed to be paying attention to what is going on around him. So the Nurse told him that he was in the hospital and that he was very sick and that they were taking care of him. She told him that they would make sure that everything would be explained to him as to what things were being done to him and what it was for.
this is when we developed a system for him to say yes and no.
Cameron now winks his left eye for yes or nods his head slightly up and down.
two eye close for no or he will shake his head a little.
She had asked him a series of questions to answer, like can you feel me touching your foot, then are you in pain? He had answered yes to these questions. She then asked if he was five years old his eyes got real big then he shook is head no, then she asked are you eleven and he said yes.
Needless to say past nurses have come in and have asked to see his accomplishments and are all very happy to see how muh he has iumproved.
Wednesday afternoon the neuro doctors decided to put the EEG back onto Cameron's head (this is the machine that shows Cameron's brain wave patterns. there were about fifty little wires connected to his head) They decided to do this as precaution because Cameron's eyes were acting a little weird a couple of times (as mentioned in the last update). Turns out everything was fine and the EEG came off on Thursday morning.
Thursday Cameron had an MRI done. They had clamped the drain line and wanted to make sure that the fluid was being absorbed properly into his body. It was, so they were able to pull out his drain line.
Cameron's head is now clear of all drain lines and EEG cords....
Cameron also had an Echo done on his heart, we found out that his heart is now up to 50%. slowly making his way up to 70%....
Friday....Wow!!! what an amazing day!!!
Cameron was asked by Neuro Surgeons to hold up his thumb and then to hold up two fingers. He was able to accomplish both!!!
Later in the day Cameron's nurse, Sheryl noticed that he really seemed to be paying attention to what is going on around him. So the Nurse told him that he was in the hospital and that he was very sick and that they were taking care of him. She told him that they would make sure that everything would be explained to him as to what things were being done to him and what it was for.
this is when we developed a system for him to say yes and no.
Cameron now winks his left eye for yes or nods his head slightly up and down.
two eye close for no or he will shake his head a little.
She had asked him a series of questions to answer, like can you feel me touching your foot, then are you in pain? He had answered yes to these questions. She then asked if he was five years old his eyes got real big then he shook is head no, then she asked are you eleven and he said yes.
Needless to say past nurses have come in and have asked to see his accomplishments and are all very happy to see how muh he has iumproved.
Thursday, May 12, 2011
5-11-11 Update
IMPROVEMENTS!!!
During respatory theropy Cameron began moving his left arm quite a few times, the first time it was as if he was about to hit his dad (of course he didn't because he doesn't have corditation yet.). After that he began flopping it around, & then atempted to extend his arm a couple times.
Four hours later during another respatory theropy session not only did he move his left arm again, but also started moving his right arm! He wasn't as active with is right arm that time as he was with the left arm the first time, but we always look forward to ANY improvements. During tat session Cameron also moved his head from side-to-side (only a little bit at a time. It was more like slightly rolling his head to the opposite side of the side he was facing before.) a couple times. JP also thought he saw Cameron slightly move his legs in ward then back outward, but we aren't completely sure if that's what really happen, or f he thought he saw it from all the movement of the respatory theropy.
We are EXREMELY proud of Camerons accoplishments and are looking forward to what he's going to do next.
During respatory theropy Cameron began moving his left arm quite a few times, the first time it was as if he was about to hit his dad (of course he didn't because he doesn't have corditation yet.). After that he began flopping it around, & then atempted to extend his arm a couple times.
Four hours later during another respatory theropy session not only did he move his left arm again, but also started moving his right arm! He wasn't as active with is right arm that time as he was with the left arm the first time, but we always look forward to ANY improvements. During tat session Cameron also moved his head from side-to-side (only a little bit at a time. It was more like slightly rolling his head to the opposite side of the side he was facing before.) a couple times. JP also thought he saw Cameron slightly move his legs in ward then back outward, but we aren't completely sure if that's what really happen, or f he thought he saw it from all the movement of the respatory theropy.
We are EXREMELY proud of Camerons accoplishments and are looking forward to what he's going to do next.
Wednesday, May 11, 2011
5-10-11 over all updated (Lauren's point of view)
So we have decided that while us kids are away from the hospital, we will leave it up to Mom to update the blog since she has a better understanding of what's going on considering she's here WAY more than we are.
So yesterday when we arrived to the hospital we only recieved good news. his heart is now up to 45% when the nurses want it to be up to 70%, so he's working his way up. Cameron also has been doing respatory theropy to get the rest of the fluids out of his lungs.
Last night when we visited Cameron, he was "awake" (opening his eyes) for a good hour before we headed over to the ROnald MDonald House for a night's rest.
This morning JP told us that he had been "awake" for a majority of the night. We're thinking he has his nights and days mixed up. At the moment he is sleeping while we are doing our homework and Tyler plans on reading to him once he "wakes up" again.
So yesterday when we arrived to the hospital we only recieved good news. his heart is now up to 45% when the nurses want it to be up to 70%, so he's working his way up. Cameron also has been doing respatory theropy to get the rest of the fluids out of his lungs.
Last night when we visited Cameron, he was "awake" (opening his eyes) for a good hour before we headed over to the ROnald MDonald House for a night's rest.
This morning JP told us that he had been "awake" for a majority of the night. We're thinking he has his nights and days mixed up. At the moment he is sleeping while we are doing our homework and Tyler plans on reading to him once he "wakes up" again.
Tuesday, May 10, 2011
5-10-11 a.m. Update (Mom's point of view)
Cameron opened his eyes this morning on his own. We were very excited , this was the first time doing this with out being poked and prawed at. When I went to him he seemed to focus in on me and then J.P. Cameron's dad came in shortly after so he got to see Cameron with his eyes open too.
Cameron was propped on his right side and his head was in the direction of the T.V. so we put cartoons on for him for some stimulation that the Nero doctors recommended. He appeared as though he watched the T.V. for about 20-30 minutes. That was all that he could handle he fell asleep.
The Nero Surgeons came in a little while later to examin Cameron. We told them everything that he did this morning and they said that was probably all that would handle for that morning. So they decided not to perform the usual pain stimulation on Cameron today.
Cameron has recieved several respratory theropy sessions in the past 24 hours and will continue until the fluid is cleared out of his right lung.
thank you for all the prayers for our family....
Cameron was propped on his right side and his head was in the direction of the T.V. so we put cartoons on for him for some stimulation that the Nero doctors recommended. He appeared as though he watched the T.V. for about 20-30 minutes. That was all that he could handle he fell asleep.
The Nero Surgeons came in a little while later to examin Cameron. We told them everything that he did this morning and they said that was probably all that would handle for that morning. So they decided not to perform the usual pain stimulation on Cameron today.
Cameron has recieved several respratory theropy sessions in the past 24 hours and will continue until the fluid is cleared out of his right lung.
thank you for all the prayers for our family....
Monday, May 9, 2011
05-09-11 mommy's point of view
Alright now I'm irritated...i already wrote a post for this and it didn't publish...errrrrr
Cameron continues to improve, slowly improve...
Sunday Cameron seemed to be exhausted from Saturdays events of pooping and slightly opening his eyes for us, so he just repeated it (practice makes perfect) Which was wonderful and we were completely happy with.
Today we got wonderful news from the cardiologist that Cameron's left ventricle has improved to 45% it needs to be in 70% range.
He stills continue to fight fevers everyday, they think it might be from his brain healing and trying to reboot as they put it. They also started to do physical thearapy on him today, moving all of his legs and arms to make sure they don't tighten up on him.
The Neurologist came in and took off all his EEG wires so we no longer have the cam T.V. brain activity to watch...(The EEG monitored for Cam's seizures and brain activity.)
When the Nero surgeons were checking over Cameron and they had his eyes opened he actually focused in on me when i called to him.
Later in the day Mema and Poppop came up to visit, Cameron opened his eyes, he focused on me and then on Mema when she called his name.
These small events mean the world to us..
Lauren, Tyler, and Ethan went to school today and will go on Tuesday. They will spend the night with us in the evening on Tuesday and all day Wednesday.
Cameron received his sponge bath today by four nurses, J.P. was jealous.
I will update tomorrow, thank you for your support and prayers.
Cameron continues to improve, slowly improve...
Sunday Cameron seemed to be exhausted from Saturdays events of pooping and slightly opening his eyes for us, so he just repeated it (practice makes perfect) Which was wonderful and we were completely happy with.
Today we got wonderful news from the cardiologist that Cameron's left ventricle has improved to 45% it needs to be in 70% range.
He stills continue to fight fevers everyday, they think it might be from his brain healing and trying to reboot as they put it. They also started to do physical thearapy on him today, moving all of his legs and arms to make sure they don't tighten up on him.
The Neurologist came in and took off all his EEG wires so we no longer have the cam T.V. brain activity to watch...(The EEG monitored for Cam's seizures and brain activity.)
When the Nero surgeons were checking over Cameron and they had his eyes opened he actually focused in on me when i called to him.
Later in the day Mema and Poppop came up to visit, Cameron opened his eyes, he focused on me and then on Mema when she called his name.
These small events mean the world to us..
Lauren, Tyler, and Ethan went to school today and will go on Tuesday. They will spend the night with us in the evening on Tuesday and all day Wednesday.
Cameron received his sponge bath today by four nurses, J.P. was jealous.
I will update tomorrow, thank you for your support and prayers.
Saturday, May 7, 2011
5-6-11/5-7-11 Update
Sorry I didn't post an update yesterday but there wasn't very much to post.
Yesterday Cameron started to initiate about 15-20 breaths a minute on his own with the breathing machine pushing him through the rest of the breath. He also did a little cough, indicating he is starting to become aware of his surroundings. We can also tell that he is agitated by his wild EEG (what measures your brain activity).
Last night his blood pressure was high for what the nurses wanted and he had a fever of 103 degrees. The nurses tried to cool him down by putting cold wash clothes on him. It wasn't until Aunt Tara came in to save the day and started barking orders at him (as JP described it). Then his blood pressure lowered and his temperature went back to normal.
This morning when we got to the hospital JP told us that Cameron had pooped for the first time (which is REALLY good because his bowls are working). He also did another cough and gag. When a doctor came around to check his sensitivity and pain he opened his eyes for a brief second after gently shaking his chest and calling his name. The nurses repeated this to show mom what he did and he twitched his arms and opened his eyes again and it looked as though he briefly looked around and he closed his eyes again. A while after that he started to open his right eye slightly.
We are so proud of his progress and can't wait for Cameron to wake up. Thank you once again for keeping us in your thoughts and prayers and signing up to donate a meal to our family. It is all greatly appreciated.
Yesterday Cameron started to initiate about 15-20 breaths a minute on his own with the breathing machine pushing him through the rest of the breath. He also did a little cough, indicating he is starting to become aware of his surroundings. We can also tell that he is agitated by his wild EEG (what measures your brain activity).
Last night his blood pressure was high for what the nurses wanted and he had a fever of 103 degrees. The nurses tried to cool him down by putting cold wash clothes on him. It wasn't until Aunt Tara came in to save the day and started barking orders at him (as JP described it). Then his blood pressure lowered and his temperature went back to normal.
This morning when we got to the hospital JP told us that Cameron had pooped for the first time (which is REALLY good because his bowls are working). He also did another cough and gag. When a doctor came around to check his sensitivity and pain he opened his eyes for a brief second after gently shaking his chest and calling his name. The nurses repeated this to show mom what he did and he twitched his arms and opened his eyes again and it looked as though he briefly looked around and he closed his eyes again. A while after that he started to open his right eye slightly.
We are so proud of his progress and can't wait for Cameron to wake up. Thank you once again for keeping us in your thoughts and prayers and signing up to donate a meal to our family. It is all greatly appreciated.
Thursday, May 5, 2011
5-5-11 a.m. Update
We spent the morning at Aunt Kim's and Uncle Chris's swimming and arrived at the hospital around 2:30 in the afternoon.
I (Lauren) was eager to find out any news. Turns out there wasn't much.
Mom told me that JP thought he saw an airplane (you know, the ones you see sometimes at the beach waving a banner behind it advertising for Hooters or something.) waving a banner behind it. He wasn't completely sure as to what it said but one of the three words he thought it said was "Pray for Cameron". He was surprised because this was early in the morning around 7:30. He could've been seeing things because of lack of sleep.
Last night Cameron had a small fever, probably caused by stress or agitation, but the nurses jokingly said it was because he didn't want to take his bath (sponge bath). The doctors also put some therapeutic boots on his feet and legs to keep his circulation, they increased his intake through the ND feeding tube (which is like a baby formula), decreased his TPN (Total Parental Nutrition {JP calls it his McDonald's}), and he has a lot more brain activity, perhaps too much than we wanted (this is may be caused by the coma medicane). We think that's just from agitation from reducing his meds.
We aren't sure when he will be waking up but yesterday we were told anywhere from 5 days to 3 weeks, but we are thinking more to whenever he actually feels like waking up (he is our late sleeper). From what Mom and JP say none of the doctors can agree on when, so they told them to talk to one anther before they talk to them. You would think with 100 years of college between the 5 of them they would know how to have a meeting of the minds. Just my thought!
Thank you everyone who has volunteered for dinner and keeping Cameron and our family in your thoughts and prayers.
I (Lauren) was eager to find out any news. Turns out there wasn't much.
Mom told me that JP thought he saw an airplane (you know, the ones you see sometimes at the beach waving a banner behind it advertising for Hooters or something.) waving a banner behind it. He wasn't completely sure as to what it said but one of the three words he thought it said was "Pray for Cameron". He was surprised because this was early in the morning around 7:30. He could've been seeing things because of lack of sleep.
Last night Cameron had a small fever, probably caused by stress or agitation, but the nurses jokingly said it was because he didn't want to take his bath (sponge bath). The doctors also put some therapeutic boots on his feet and legs to keep his circulation, they increased his intake through the ND feeding tube (which is like a baby formula), decreased his TPN (Total Parental Nutrition {JP calls it his McDonald's}), and he has a lot more brain activity, perhaps too much than we wanted (this is may be caused by the coma medicane). We think that's just from agitation from reducing his meds.
We aren't sure when he will be waking up but yesterday we were told anywhere from 5 days to 3 weeks, but we are thinking more to whenever he actually feels like waking up (he is our late sleeper). From what Mom and JP say none of the doctors can agree on when, so they told them to talk to one anther before they talk to them. You would think with 100 years of college between the 5 of them they would know how to have a meeting of the minds. Just my thought!
Thank you everyone who has volunteered for dinner and keeping Cameron and our family in your thoughts and prayers.
Wednesday, May 4, 2011
Update as of 5-4-11 morning
(Another email from Uncle Chris to the Piperfire Co.)
Cameron seems like he is out to prove the Doctor’s wrong at every turn. Cameron’s body and organs have stabilized. There have been no further failures, although the Doctors have warned of the possibility of future failures, it is great to have had two days of relative stable conditions. We are all ecstatic.
Cameron seems like he is out to prove the Doctor’s wrong at every turn. Cameron’s body and organs have stabilized. There have been no further failures, although the Doctors have warned of the possibility of future failures, it is great to have had two days of relative stable conditions. We are all ecstatic.
Last night Cameron had an MRI to determine the extent of his brain damage and to determine if there were blood clots or bleeds after the operation. He was free and clear of anything imminently dangerous, but there had been significant trauma to the frontal lobe of the brain and another area as well. The neurologist stated that he had seen worse and had patients make a full recovery. He also stated that he had seen less damage in patients that had life long struggles.
Today, they have stopped the medication that is keeping Cameron in a coma. The next week or so will be a sensitive time for our family and Cameron. He is likely to have some difficult reactions as he comes out of this coma. He may be sensitive to noise, smell, and light. He may also have outbursts and emotional problems. He will be starting some music therapy over the next couple of weeks from what we were told. From what we understand, this is going to be a slow process with small victories and set backs along the way.
As a family, we are all in awe of where we are today in contrast to Saturday morning. We think our entire family can all agree that this was the worst day in our collective lives. The tears are bit rarer and smiles and laughs are much more common since yesterday. We all feel truly blessed at where we have come in a VERY short period of time.
Us kids have really held up well throughout this process. Today is their first day to spend some considerable time away from the hospital since Saturday. We are at home to visit their dog and get some relaxation time away from the stresses of the hospital. We have been sleeping at the Ronald McDonald house and taking most of their meals and spending most of their time in Cameron’s room or in the hospital waiting room. All Children’s is an amazing place for patients and siblings. It is very kid-friendly. The counselors meet and speak to the kids daily about what is going on and encourages them as well as the adults to talk about what is going on with each other.
We sincerely appreciate all of you who have sent cards, emails, texts, and dinners. The support of the community has been nothing short of overwhelming for Jennifer and JP. As JP said, “We truly would not have made it through this if not for our family and friends.”
Tuesday, May 3, 2011
The story so far... (as of 5-2-11)
Originally sent out by Uncle Chris as a Piperfire e-mail & was altered so we (Lauren, Tyler, & Ethan) could start Cameron's blog.
Jennifer and JP asked me to send out an update on their son, Cameron, whom many of you know was transported from Helen Ellis Hospital to All Children’s Hospital Friday with seizures. He is still fighting for his life this morning, but we wanted to start this blog to keep everyone informed. We will relay as much information as we have as accurately as we can and will keep you updated on Cameron’s condition.
Cameron had been sick with a fever for two or three days. He had breaks in his fever, but was lethargic and extremely tired. He is normally a very active kid. On Friday morning as Cameron’s dad, Howie, was getting Cameron’s brothers Tyler and Ethan ready for school, Cameron started having seizures. He was rushed by ambulance to Helen Ellis Memorial Hospital .
Initial diagnosis was that he was having seizures from a high fever and the CAT scan of Cameron’s brain that was performed at Helen Ellis showed no abnormalities. When family arrived at All Children’s Hospital at about 5:00, Cameron had been their about 2 hours and he still hadn’t regained consciousness and was still having seizures. The doctor’s were about to perform a spinal tap on him to check for Meningitis when his heart rate and blood pressure spiked. This caused the team to hold up and they called in a specialist. It was determined that Cameron’s brain had swelled to a point where it was pushing against his skull to the point that the folds of his brain were undetectable. They rushed Cameron into emergency surgery and removed the front half of his skull to allow his brain to continue to swell. The doctor said later that if they had done the spinal tap, he would have died at that moment.
On Friday night they met with the doctor and he informed them that Cameron would most likely not make it through the weekend. There was a small hope, 1 in a 1000 perhaps that he would be able to make it through. Overnight, his condition deteriorated. His internal organs started to fail. His pancreas failed, his liver and kidneys started to bleed. His left ventricle had also stopped working properly. Saturday morning the doctors informed family that Cameron wouldn’t make it through the day. We were brought in to see him Saturday about noon. Up until that point we didn’t know what was happening and as a family, they were trying to keep it quiet so that we wouldn’t hear about it until Jen and JP had decided it was time. As a family, we grieved throughout the day. We said many, many prayers and we appreciate the prayers from all of you, your family, and your churches. By Saturday night, the doctor informed Jenn and JP that there was some minor improvement and that he had upgraded his outlook by the slightest margin. You can imagine our relief and joy at what many of us believed was an answer to prayer.
On Sunday Cameron’s kidney function improved marginally, his pancreas function seemed to be improving, and his heart seemed to be getting a little stronger. By last night they had changed out the ventilator that is keeping Cameron alive to one that will make him start to breathe more normally. He is fighting for his life.
Cameron currently has 24 I.V.’s and is hooked up to more machines than we thought existed. He has at least one nurse at his bedside almost constantly. The care he is getting is truly without equal anywhere.
The doctor’s haven’t definitively diagnosed Cameron, but right now believe that he has Encephalitis, contracted from a mosquito bite. They likened the chances of this type of reaction to being struck by lightning. They rarely get an opportunity to treat a child. They nearly always come in brain dead. The good news is that Cameron got to them in time to give him an opportunity to fight this fight.
The doctors are unsure if Cameron recovers what his brain activity will be like. They currently give him less than a 10% chance of survival and a far less chance of recovering fully. I am fervently believing that our Lord Jesus Christ will heal Cameron fully. We have seen miracles every day in Cameron’s prognosis and we are not giving up hope that he will make a full recovery. My entire family thanks you so much for your prayers and kind thoughts. We feel like this is in God’s and Cameron’s hands now. When you have a spare moment during your day, we would appreciate you lifting Cameron along with Jenn, JP, and us up in your prayers.
Jenn and JP, as you can imagine, are living minute by minute with almost no sleep and are extremely emotionally drained. We would like to convey our heartfelt appreciation for your prayers. Please feel free to leave comments and/or prayers on the blog.
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