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.
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