Saturday, February 28, 2009
Seizures
Yesterday was a rougher day with lots of absent and petite mal seizures. He was really out of it. This morning he seems to be much more alert. Don't know what causes those days neither do the doctors it is just some days are worse than others. Thankfully those days are fewer than they used to be.
Wednesday, February 25, 2009
Long day
Yesterday was a long day. I felt bad because I really pushed Brae too much. The kids and I ended up getting up and around at 5am to go to Little Rock. We didn't get home till 5:30pm and we had about 45 minutes before going to Britt's basketball tournament. I couldn't miss it as it was the last of the games for the season so we all went. The games were running behind and we ended up not getting home till 10. Brae was beyond wiped out he slept 12 hours straight.
He is kind of just tired and laying around today and thankfully it is a day where we really didn't have to be anywhere so he got to just rest up. Actually we all got to rest up which is nice.
His neck is looking a lot better as are the sores on his mouth. His lips started getting really chapped looking and bleeding around them and they said that is all part of it. We got some medicated lip medication and it is already looking better. I kept asking if they hurt because they looked terrible but he said they didn't.
He is kind of just tired and laying around today and thankfully it is a day where we really didn't have to be anywhere so he got to just rest up. Actually we all got to rest up which is nice.
His neck is looking a lot better as are the sores on his mouth. His lips started getting really chapped looking and bleeding around them and they said that is all part of it. We got some medicated lip medication and it is already looking better. I kept asking if they hurt because they looked terrible but he said they didn't.
Monday, February 23, 2009
Monday
We are over halfway done with our radiation protocol now.
Brae definitely does not fit the information they give you on how radiation will affect you. Actually he doesn't fit the rules on how any of this is suppose to affect him. Which is wonderful. One my absolute favorite stories was when we were leaving the ICU monitoring area and one of the nurses told Brae he was a lucky boy this was after the Austin incident. Brae looked at her like she had three heads and says "I am not lucky Jesus loves me" just as plain and clear and I just smiled. I loved it.
He is loving this soccer thing. I am so thankful for it. I have prayed for something that would build his self esteem which is low and that he would enjoy. We have tried things but either his sister was with him and did more than he did or he felt he couldn't keep up or he just plain didn't want to do it. Soccer he told me he was born to do. He actually volunteered to run extra laps. Those that don't know him well won't think this is a big thing but as his mother I know how huge that is.
He played over 3 hours of soccer on Saturday. His energy was boundless.
He still has his struggles of course and the radiation protocol is no picnic for him but his attitude just keeps things going. Everyone always brags at how well I deal with everything. But it isn't me one thing we have said since he was 3 was all that was keeping us together was God Glue, the other thing is his attitude it is a blessing beyond belief. One of the things we struggle with are mornings. Mornings aren't his favorite anyway and add in medications and side effects of radiation and they can be pretty hard. Sometimes it may take him 3 or 4 hours to be able to even get around. It takes me holding him and really talking to him so he doesn't have a melt down some mornings.
I will be calling today to set up and confirm our future appointments with Memphis and Austin. Try to get our schedules all planned out and what is needed for what appointment all that kind of thing.
I feel good about the way this protocol has gone I feel blessed by his lack of side effects and as always I am so blessed by his general attitude.
Brae definitely does not fit the information they give you on how radiation will affect you. Actually he doesn't fit the rules on how any of this is suppose to affect him. Which is wonderful. One my absolute favorite stories was when we were leaving the ICU monitoring area and one of the nurses told Brae he was a lucky boy this was after the Austin incident. Brae looked at her like she had three heads and says "I am not lucky Jesus loves me" just as plain and clear and I just smiled. I loved it.
He is loving this soccer thing. I am so thankful for it. I have prayed for something that would build his self esteem which is low and that he would enjoy. We have tried things but either his sister was with him and did more than he did or he felt he couldn't keep up or he just plain didn't want to do it. Soccer he told me he was born to do. He actually volunteered to run extra laps. Those that don't know him well won't think this is a big thing but as his mother I know how huge that is.
He played over 3 hours of soccer on Saturday. His energy was boundless.
He still has his struggles of course and the radiation protocol is no picnic for him but his attitude just keeps things going. Everyone always brags at how well I deal with everything. But it isn't me one thing we have said since he was 3 was all that was keeping us together was God Glue, the other thing is his attitude it is a blessing beyond belief. One of the things we struggle with are mornings. Mornings aren't his favorite anyway and add in medications and side effects of radiation and they can be pretty hard. Sometimes it may take him 3 or 4 hours to be able to even get around. It takes me holding him and really talking to him so he doesn't have a melt down some mornings.
I will be calling today to set up and confirm our future appointments with Memphis and Austin. Try to get our schedules all planned out and what is needed for what appointment all that kind of thing.
I feel good about the way this protocol has gone I feel blessed by his lack of side effects and as always I am so blessed by his general attitude.
Friday, February 20, 2009
Feeling Better
Brae is already starting to feel better.
He is on antibiotics for the sinus infection. Antibiotics bring their own issues and concerns but he needed them in this case.
Yesterday his neck looked pretty raw from the radiation and some kids asked him about it his response "It's a medicine thing it doesn't hurt don't worry". It was just such a Braden response.
He is on antibiotics for the sinus infection. Antibiotics bring their own issues and concerns but he needed them in this case.
Yesterday his neck looked pretty raw from the radiation and some kids asked him about it his response "It's a medicine thing it doesn't hurt don't worry". It was just such a Braden response.
Thursday, February 19, 2009
Ear Ache
Brae is complaining of a bad ear ache. They don't see fluid or anything to show infection so they are thinking it is a side effect of the radiation even though it is not a common reaction. So we are watching for fever and giving Motrin for the pain.
*Update
He does have the beginnings of a sinus infection they believe the ear pain may be from that or the radiation but he did not have an infection in the ears. We started him on an antibiotic for the sinus infection.
*Update
He does have the beginnings of a sinus infection they believe the ear pain may be from that or the radiation but he did not have an infection in the ears. We started him on an antibiotic for the sinus infection.
Wednesday, February 18, 2009
Lots of energy
Braden is continuing to surprise me in regards to his energy level during his treatments. He says he is ready for soccer practice tonight. He is really having a good week. He had some trouble focusing this morning but that has been better as the day progressed.
Putting it all down on paper for the future starting with the Austin story...
Putting it on paper. I think it is a good idea for many reasons. One I know that Brae is going to do amazing things with his life and I want him to see just how much he came through.
I am starting my stories with the most recent one that occurred in December. I relive that day 100 times a day still.
It was routine time in Austin. We had went early in the morning just Brae and I so he could get his MRI done. I remember sitting in the waiting room, being called back, sitting in the hard plastic chair in the corner while they got Brae ready. I recall the medicine in the cup (he had it several times before). Now looking back I realize they had not hooked him up to a pulse ox machine as they always had in the past but at that moment I didn't catch it. The nurse told me she would let him get sleepy and be back in a few minutes. I was thumbing through a magazine and Brae had a Look and Find book. I had my head bent and I heard the book hit the floor so I looked up. At that point it looked like he just fell back and I thought he was having a seizure.
I moved him from the table to the floor on the side without chairs etc because my mind was moving fast and I knew if he was going to start seizing I didn't want him to hit anything it all took less than a minute I moved him opened the door shouted for a nurse that he was seizing and we were going to need diastat. The nurse ran by me and at this point I looked. I could only see his legs but I remember in that split second thinking if he is seizing why is he so still. The next second the nurse said get in the corner or you will have to get out. I didn't question I did and my mind at this point was in a haze of what is going on. She screamed "code blue" and I think my heart stopped as well. All I could do was scream and ask what was going on from my banished place in the corner. I will never forget the site of him being intibated for his breathing. I had never seen it done and had no idea the roughness that it required. I had seen lots of shows using paddles on the chest but never on someone I loved. I thought it went on for hours all I wanted to do was get out of the hallway and call Matt but I was afraid they wouldn't let me back in if I got out of the corner.
Later I would learn it was 7 minutes and 3 seconds. I still say it felt like hours. There was blood unlike any scene I had ever seen before. He was still oh so still the machines were beeping now. I will also not forget our surgeon who we travel so far to see (and this story tells you why) barging into the room. He is a surgeon and had no reason to have to be there but he had heard it first over the intercom and then had heard the name and he came immediately. He sprung into action making sure my blood pressure was okay, and said "You have been praying you know it isn't his time and God will allow us to help". That sentence you have no idea how comforting that was. The doctor took charge started screaming at nurses for no pulse ox being hooked up ordering med cups pulled from the trash, etc. He knew it shouldn't have happened and was leaving no stone unturned.
We were moved to ICU. I later learned my doctor had cancelled 2 hours of patients. I didn't realize he was there that whole time but he was. It was almost 30 minutes later before I could call Matt, and then my aunt to arrange to get Matt to me because we had thought it was a routine MRI so him and Brittney had stayed at my aunt's so he could work. Before he was completely settled I had to cry I had to let my friends know what was going on. At that moment they were the world that I needed I knew they would pray with me I knew their hearts and that they would pray. I just remember thinking I have to call Adria I have to call Stephanie over and over until I could get a minute to do it.
Things would get bumpy for hours to come he would have more reactions and the crash cart stayed by the door. I was told it would probably be the next day before he came out of all the meds they had given and before he would be breathing on his own. But they didn't know my boy or all the prayers going up on his behalf because mere hours later he was fighting the vent and trying to breath on his own and waking up despite the meds so they weaned him off.
He was so mad at me when he woke up. Because he had an IV in his arm and he knows if he gets stuck he gets a surprise. I didn't care that he was mad I was just so happy that he was okay. I knew as soon as he got mad that it would all be okay. I listened to them talk about damage to the heart and brain but I knew it would be okay and it was.
I will never forget that day and I now can accept that and realize that it is a day full of family, friends, prayers, people I didn't know coming forth a day that God touched our lives and decided to let him stay with us so it is no longer with horror but aww that I look back.
I am starting my stories with the most recent one that occurred in December. I relive that day 100 times a day still.
It was routine time in Austin. We had went early in the morning just Brae and I so he could get his MRI done. I remember sitting in the waiting room, being called back, sitting in the hard plastic chair in the corner while they got Brae ready. I recall the medicine in the cup (he had it several times before). Now looking back I realize they had not hooked him up to a pulse ox machine as they always had in the past but at that moment I didn't catch it. The nurse told me she would let him get sleepy and be back in a few minutes. I was thumbing through a magazine and Brae had a Look and Find book. I had my head bent and I heard the book hit the floor so I looked up. At that point it looked like he just fell back and I thought he was having a seizure.
I moved him from the table to the floor on the side without chairs etc because my mind was moving fast and I knew if he was going to start seizing I didn't want him to hit anything it all took less than a minute I moved him opened the door shouted for a nurse that he was seizing and we were going to need diastat. The nurse ran by me and at this point I looked. I could only see his legs but I remember in that split second thinking if he is seizing why is he so still. The next second the nurse said get in the corner or you will have to get out. I didn't question I did and my mind at this point was in a haze of what is going on. She screamed "code blue" and I think my heart stopped as well. All I could do was scream and ask what was going on from my banished place in the corner. I will never forget the site of him being intibated for his breathing. I had never seen it done and had no idea the roughness that it required. I had seen lots of shows using paddles on the chest but never on someone I loved. I thought it went on for hours all I wanted to do was get out of the hallway and call Matt but I was afraid they wouldn't let me back in if I got out of the corner.
Later I would learn it was 7 minutes and 3 seconds. I still say it felt like hours. There was blood unlike any scene I had ever seen before. He was still oh so still the machines were beeping now. I will also not forget our surgeon who we travel so far to see (and this story tells you why) barging into the room. He is a surgeon and had no reason to have to be there but he had heard it first over the intercom and then had heard the name and he came immediately. He sprung into action making sure my blood pressure was okay, and said "You have been praying you know it isn't his time and God will allow us to help". That sentence you have no idea how comforting that was. The doctor took charge started screaming at nurses for no pulse ox being hooked up ordering med cups pulled from the trash, etc. He knew it shouldn't have happened and was leaving no stone unturned.
We were moved to ICU. I later learned my doctor had cancelled 2 hours of patients. I didn't realize he was there that whole time but he was. It was almost 30 minutes later before I could call Matt, and then my aunt to arrange to get Matt to me because we had thought it was a routine MRI so him and Brittney had stayed at my aunt's so he could work. Before he was completely settled I had to cry I had to let my friends know what was going on. At that moment they were the world that I needed I knew they would pray with me I knew their hearts and that they would pray. I just remember thinking I have to call Adria I have to call Stephanie over and over until I could get a minute to do it.
Things would get bumpy for hours to come he would have more reactions and the crash cart stayed by the door. I was told it would probably be the next day before he came out of all the meds they had given and before he would be breathing on his own. But they didn't know my boy or all the prayers going up on his behalf because mere hours later he was fighting the vent and trying to breath on his own and waking up despite the meds so they weaned him off.
He was so mad at me when he woke up. Because he had an IV in his arm and he knows if he gets stuck he gets a surprise. I didn't care that he was mad I was just so happy that he was okay. I knew as soon as he got mad that it would all be okay. I listened to them talk about damage to the heart and brain but I knew it would be okay and it was.
I will never forget that day and I now can accept that and realize that it is a day full of family, friends, prayers, people I didn't know coming forth a day that God touched our lives and decided to let him stay with us so it is no longer with horror but aww that I look back.
Actual Diagnosis
My friend in Texas called to check on Brae and was asking about his actual diagnosis. This is so hard for me to answer because he has so many things. Some of the things get pushed to the back burner and others are more forefront. But officially these are on his charts: Aspergers Autism, Verbal Apraxia, Celiac Disease, Milk and Soy intolerance, Benign tumors, and metal toxicity. I think those are all!
My friend also requested that I go back and write some of the stories that I have shared such as are experience in Austin when we almost lost him, his first surgery etc. I think it is a good idea so I have those for him and to help some of our friends understand. So I will be working on those as time permits (if that means I have to wait till I have free time the wait will be long..LOL).
My friend also requested that I go back and write some of the stories that I have shared such as are experience in Austin when we almost lost him, his first surgery etc. I think it is a good idea so I have those for him and to help some of our friends understand. So I will be working on those as time permits (if that means I have to wait till I have free time the wait will be long..LOL).
Tuesday, February 17, 2009
Good Night
Braden slept well last night.
He is getting ulcers in his mouth again. But this time we know to start the magic mouthwash right away. The ulcers unfortunately are a part of it due to where his radiation is located.
His neck looks pretty raw. We are trying to come up with another way for him to wear his magnet and medical id tag without having to buy a whole new med alert bracelet. The chain is irritating his neck.
He will probably be tired most of the day so we have a low key day planned with a little school work and some movies to watch.
He is getting ulcers in his mouth again. But this time we know to start the magic mouthwash right away. The ulcers unfortunately are a part of it due to where his radiation is located.
His neck looks pretty raw. We are trying to come up with another way for him to wear his magnet and medical id tag without having to buy a whole new med alert bracelet. The chain is irritating his neck.
He will probably be tired most of the day so we have a low key day planned with a little school work and some movies to watch.
Monday, February 16, 2009
Praise!
Radiation is being effective!
We had a lot of discussion and are cautiously optimistic. Still lots more treatment and appointments but just to know it is being effective is WONDERFUL!
We had a lot of discussion and are cautiously optimistic. Still lots more treatment and appointments but just to know it is being effective is WONDERFUL!
Currently
Trying to catch this up so that I can post on it regularly from now on.
Currently Brae has two masses one in the cerebral magnum of the brain and the other on the stem. The one on the stem was putting pressure on his spinal column causing pain and numbness in his legs.
We are doing a 6 week radiation protocol.
Brae is doing so good with the protocol.
Today we will get test results back on how things are progressing as well as in regards to abnormal results.
Currently Brae has two masses one in the cerebral magnum of the brain and the other on the stem. The one on the stem was putting pressure on his spinal column causing pain and numbness in his legs.
We are doing a 6 week radiation protocol.
Brae is doing so good with the protocol.
Today we will get test results back on how things are progressing as well as in regards to abnormal results.
Sunday, February 15, 2009
pictures
I keep pictures close to me sometimes just to see how far Brae has come.
Here are a few when he was a very sick little boy.
and here is my little boy practicing soccer for the first time ever yesterday. Out there with all the other 9 year olds running and playing. No one would know that he is currently undergoing radiation, or that he has been so sick. I am so blessed by his attitude with everything.
Here are a few when he was a very sick little boy.
and here is my little boy practicing soccer for the first time ever yesterday. Out there with all the other 9 year olds running and playing. No one would know that he is currently undergoing radiation, or that he has been so sick. I am so blessed by his attitude with everything.
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