Cameron Update: Monday April 8, 2013;
I know for some of you it has been to long since my last update, and some of you have want REAL updates but we’ve tried to keep the information positive for our own sanity and yours. So to date Cameron has shown us and the MEDICAL WORLD that what was thought to be impossible is very POSSIBLE, he has shown great improvement since he came home. However the truth is the KID is a fighter, and his current condition is still very serious and his outcome is unknown to us but we’re never giving up. L.E.S. WARNING!!!! So here’s the truth; the blood clot in his brain (CSVT) is still there and still unchanged from January as of last week, not what we wanted to hear, he has also been accepted into a new study at All Children’s Hospital, one for patients with rare forms of STROKES caused by his current CSVT. His diagnoses is the following, Static Encephalopathy, Severe Leukoencephalopathy, Severe Cytotoxic Cerebral Edema, 8 inch Occlusive Thrombus of the right Transverse and Right Sigmoid Sinus, Veno-Occlusive Disease, Recurrent Status Epileptics (related to an allergic reaction to a medication), mild right-sided Spastic Hemiplegia, and lastly Severe PTSD (posttraumatic stress disorder). What does all of this mean, well nothing good, if you research anyone of these you won’t like what read let alone having all of these at one time. So I ask of you who have followed and supported Cameron and our family to please continue, but don’t be shocked if some of the answers you may get aren’t always Rainbows and Sunshine. This is our life day to day, we have UPS and we have DOWNS everyday and week.

Cameron Update 3-17-13

3-17-13

Cameron Update: I know it’s been a couple of week’s sense the last update but life doesn’t stop when you get home, it gets out of control. Now onto the one that really counts Cameron, he has continued to improve on all levels. Cameron has started his all of his therapies (Speech, Occupational, and Physical), he does three hours of each every week, along with 4 different teachers coming to the house for 100 minutes each. Homework everyday just like the rest of the kids, Cameron has and will always continue to fight everyday; some things are definitely different this go around. The first time Cameron had no FILTER and we mean no filter, going to Wal-Mart with him was always very interesting. This time is the total opposite he is very quite and doesn’t want to bother anyone, also he won’t let us know if something is hurting, or bothering him without us prying very hard. We have started to get answers to what did this to him for a second time, but we still have a lot of tests and once we know everything then we will fill everyone in. Jenn and I are still in shock, and going through the phases of that come with an ordeal like this. One thing we have learned and want everyone to know is that don’t ever stop asking questions, if something doesn’t sound right, ask someone else, your child’s voice during a time like this comes from you. We thank you all for follow, praying and sending your kid words, they all help. I try to make sure the next update doesn’t take so long.

3-5-13
Cameron Update: Cameron has been continuing to improve at a speed and level no one and I MEAN NO ONE thought would or could be medically possible. Cameron has started back with home schooling (Hospital Home Bound). We have been going through the transition of changing doctors and specialist that have experience with his type of condition and also experience with adverse allergic reactions to antibiotics. Cameron condition is very rare and extremely complicated, a recent studied published by the American Heart Association published February 3, 2011 states that his CSVT (Cranial Sinus Venous Thrombus) is an extremely uncommon and is a frequently unrecognized type of stroke that affects approximately 5 people per million annually (reported cases in the US only) and accounts for .5% to 1% of all strokes, now from the signs he is showing with his recovery this study doesn’t support a full on stroke,( www.stroke.ahajournals.org is the study you can read about it) but with the help of all of you with your endless months, weeks, days and hours of Prayers and the Positive projection of healing Karma of has been working. Our family has been blessed twice, and we have always said that Cameron was meant to for greatness (but not this way). We are going to continue our fight to prove what did this and make sure that this doesn’t go unreported so to help others around the world know what to do and say when a love one’s life is at risk. Also read this report that was released last week, this will help you with your own family and what you need to do every time someone has a medical issue. Just copy and past this link. (http://health.yahoo.net/news/s/nm/misdiagnoses-in-doctor-s-office-can-do-harm-study#.US31wuKIagw.email). Once again My Family Thanks everyone for their ongoing support and love.

Cameron is Home!

Cameron Update: 7:49pm Tuesday February 19, 2013; CAMERON IS HOME, CAMERON IS HOME. Was discharged from TGH today, and now is home with us. Cameron will start his out patient therapies tomorrow, he will be doing a total of 9 hours a week, 3 hours of Occupational, 3 hours of Physical, and 3 hours of Speech. Along with 3 hours a day of therapy at home, doing things that we normal people do but don’t realize how strenuous of a workout the little things can be. Cameron’s at home school will start back up in a week or two also. At this time we still have a lot of work ahead of us, like pen pointing what the Trigger was, we have our suspicions but it would require that one of those people with 12 years of college, and $200K in school loans to agree. However it is apparent that one boy can PROVE everyone in the medical world wrong not once but twice. I think they will have to make a movie about the boy who they said he would not, would never, could not, could never but HE DID. TWICE. I will keep the updates coming.

Cam Update 2-18-2012

Cameron Update: 2-18-13; Ok everyone I know it’s been a week or so sense I have given a true update on Cameron recovery but it has been very busy with Cameron, his brothers and sisters, and also work. I knew that I might have been JINXING ourselves but with our last post of Cameron coming home last week for good but I was just to excited of what it might have been. Cameron isn’t home yet but was able to come home for TWO visits this weekend. Jenn brought him home on Saturday Morning, I took him back Saturday night, then back home on Sunday and then Jenn took him back last night for what should be his last week at TGH. I have to be honest, when I had to pack him up to go back on Saturday night I wasn’t doing to well with it, I could hardly pull out of the driveway. I tried to hide my tears but it was very hard, I also new that if he saw me upset it was cause him to have a break down. So I tried to man up, but for crying out loud I cry at those damn PUBLIX Holiday Commercials every year (YES I AM A MAN AND I CRY). The visit was with him at home, have everyone at the dinner table at one time, having family movie night (“Here comes the BOOM” very funny a must watch) was so the best. We hope this is going to be his last week at TGH, but we will just have to wait and see. I have attached some pictures from Valentines Day, and this weekend, one of pic's just isn't right see if you can find what's wrong with one of these pictures..

Cameron Update:
2-8-13 -6:30am:
Cameron is moving a lightning speed still, he is getting stronger and stronger with every workout. He is getting his spirit back more and more every day. Hearing and seeing what he is doing everyday from Jenn is great, but knowing that I get to relieve Jenn today for the weekend shift makes me excited. We still haven't heard from any of the Neurology Team (shocking), the AI Team (Allergy Immunology) came by yesterday and took a more blood samples for some new tests. They're testing for HLA (Human Leukocyte Antigen), they are trying to put a correlation together with the Antibiotics and his two extreme episodes. Why it has taken so long for a couple of Doctors to agree that it's too coincidental that this could happen twice when he was on the same two drugs before each episode. So I have started my own "JP's Real World Dictionary" Doctors: full desperate rhetorical contortions of someone with the pathological need to be right and never be wrong; please note that if a "Doctor(s)" become hard to find, don't come and check on their patient, don't make eye contact with you if see them, walk the other way when they see you, then you have "PWGASS" (Parents Who Give a Shit Syndrome). Don't worry it's not a bad disease, it's a good one. Oh yea and they really HATE IT when someone like me who considers 6th grade as my Senior Year, and can't spell to save my life. Points out, finds answers, never stops questions them on everything that doesn't make sense, makes them SCARED when they see coming. To think that just because Jenn and I are committed parents (not parents that need to be committed) and dedicated to making sure our son gets the right medical treatments, attention, and tests he deserves has some of them not doing their job at all. This is disheartening to me to think that if other parents are not as involved we are then who is the VOICE is for those sick children who doesn't have a VOICE.

2-7-13

Cameron Update:
2-7-13- 6:30am
So Cameron, what has he done up to this point is probably easier to list what he HASN'T DONE. Cameron yesterday hit more and more mile stones, during PT he stood with his Therapist and a walker and marched in place, walked 3 or 4 steps with PT, turned around and walked back and sat on his bed. This feat on it's own is AMAZING this early in his recovery, also he is eating and drinking all of his food and medication that are in pill form. Jenn said that he is also brushing his teeth, feeding himself with help from Mom, and also using the bathroom more regularly. All of these things are months ahead of his first episode. Yesterday had a new CT conducted to look at his Blood Clot along with a new panel of test that the new Hematology Team wanted, they are looking for a connection too the 2 antibiotics Cameron was on both times this has happened to him. Cameron has shown unbelievable signs of improvement on his motor function skills, but the Neurological side effects are things that we can’t say when they will go away, maybe in a week, month, year, or not. We were still seeing Neurological side effects from the first injury, and sense we haven’t seen or heard the from Neurology Team in the past 17 to 20 days and he’s not on the Neurology Floor we still have no answers. I am never going to stop questioning, second guessing, researching, or fighting for my son’s life. This picture was taken yesterday at 6:35pm, when I saw it I more than moved, so in advance I am sorry for any “Leaky Eye Syndrome” it has caused, but yes he is outside in one of the many gardens at the hospital with Jenn. I love you Cameron, you inspire me to be a stronger Man, Father, Friend and Husband!

2-6-13 Update

Cameron Update: 6:30; So yesterday was a day of UPs and DOWNs. Cameron finally got moved out of the ICU and up to the 8th floor (General Medicine Floor) we thought he would have been moved to the 7th which is the Neurology Floor but sense they don't have any answers that's my guess. Cameron is feeding tube has been removed, well he removed it for the 5th time so they left it out. He is eating, drinking, taking most of his meds by mouth, and he used the bedside commode which is real big. We finally got a visit from the Hematology Team yesterday, Jenn had me on speaker phone for the meeting which worked out really well. Dr. Goldmen (who seems to be an OUT OF THE BOX thinker) listened to all of our questions and answered the ones he could, the rest were referred back to Neurology (NO ANSWERS FROM THEM). They revisited his MRI's & MRV's and go some news which wasn't so great, the first report of Cameron's Blood Clot in his brain was that is was Non-Occlusive (which means smooth blood flow), however after the real experts reviewed it was indeed Occlusive (which means blocked, or extreme narrowing of the vein). They do say that it has improved but that means "Not getting larger" or "Reducing in Size" we don't know yet. Also we mentioned the two Antiobotics he was on both times this happened, he was shocked first that he was given them a second time, but also that he treated a teenage girl who had a severe reaction to an Antibiotic years ago, now she is one of his research assistance's. They are running more tests again, all other tests have come back NEGATIVE (except one skin biopsy for showing Positive for Allergic Drug reaction). We will wait and see. Then the mail came and the picture attached is Cameron's latest report card showing his grades. As you can see he missed straight A's by one, he was back on grade level with his Twin Brother (8th) in all General Education Classes. This broke me pretty hard to see all of his hard work and what he accomplished, now he will be starting over again but "If anyone can CAM CAN". Let the work begin.

 

2-5-13

Cameron Update:
2-5-13- 6:30am;
Cameron is still improving at a remarkable rate, he is still in the ICU at All Children's Hospital. Cameron was able to eat his special Ketogenic breakfast, and now dinner. This diet is a HIGH PROTEIN AND FAT with low sugar and carbs 4:1 ratio. So for all you meat eaters you now can have all the steak and eggs you want, or try a juicy burger with butter on it. However every thing has to be charted and down to the grams for every meal every time. What this does is remove all the carbs from his body and replaces it with fat, then the body will use the fat as fuel, this is similar the Adkins Diet but very strict. Ketogenic Diets are being used to help people with severe Epilepsy Disorders. As for new mile stones for Cameron he was able to sit in a chair for over 15 minutes yesterday, and use the bedside commode for the first time. We are STILL WAITING to hear on any results on a lot of the tests that are still out of the state and country. Still waiting on any updates about his Blood Clot in the brain too, you would think that we would be given updates regularly but it had been two weeks and we had to ask for someone to updates. So they have sent two different doctors down who both say that their not the experts and not going to be the one treat him so a new doctor will come by. The story of lives, still no answers to what did this, or if and when it will happen again. But the time being CAMERON KICK BUTTOWISKI is rewriting the rule books, and making the experts rethink everything they know.

Cameron Update:
2-4-13-6:23am;
So while everyone watch the Super Bowl last night Cameron was in his own Super Bowl of sorts himself. Jennifer came and took over my shift last night. I guess she had enough of Cam not getting his hair clean so she had them bring in a Wheel Chair that can go into the Family Shower on the floor that we use. They put Cam into the chair, wheeled his butt out of his room and gave him his first shower in over 40 days (they normally give sponge baths in his bed but not the same). The first SUPER EVENT is that he was sitting in a chair which is one of the hardest things to do when you haven't in 40 days, second is that she sent me a picture of him after his shower and he had smile on his face and was sticking his tongue out. People you don't understand what this means to us, if you have never seen the pain and fight that people put up when you try to get them into a chair after being unable to move for weeks and months is pain only they can explain. I know that every time they did the first time it brought Jenn and myself to tears, but this is F*&$#*@ SUPERMAN. I guess yesterdays picture I drew for him must have inspired him. "CAMERON-KICK BUTTOWSKI" thats his new name so don't forget it.

2-3-13

Cameron Update:
2-3-13- 9:30pm:
WOW, WOW, WOW is all I can I say about this SUPERMAN of a kid. It is not medical possible what he is doing, over the past five day he has it goals that tooks months last time. Today during PT he stood again and used 75% of his own power to do it, now he is being loaded into a special chair and going to get to take a REAL SHOWER. The rate he is recovering is unlike anything anyone has every seen, he can read, he can stand, he can sit up, and now he is eating. Today for breakfast he did great considering what his choices are with this Ketogenic Diet. This will be a big under taking learning how to balance his protein and fat to carbs and sugar. This diet requires high protein, high fat, low sugar and carbs. So everything will need to be measured down to the grams for every meal. What I can say is that anything is possible with him and his will to fight. We still have a long road ahead of us but Jenn and I are up for it, if we can do it once we can do it twice.

Cam Update 2-2-13

Cameron Update:
2-2-13 - 7:45pm
Cameron had a great day today, he sat at the edge of his bed during PT and OT for over 15 minutes without assistance to stay upright. He stood again with assistance but only for a short period of time. He got to eat some real food today with speech therapy and did very well with it. I am still amazed at how fast he is doing things this time. He is being a typical teenager pulling things out, and not willing to chat when you want too but I am just fine with that. We are still in the PICU, and haven't heard anything about when we're going be moved to a different floor. For some reason they still don't have any answers for us to what did this or what they plan on doing going forward. This has been one of our biggest issues this time. Well tomorrow is anther day and with Cameron driving we will be sure to have a good day.

2-1-13

Cameron Update:
2-1-13- 6:30pm
Cameron is still move in the right direction, during PT today they had Cameron STAND, not once but TWICE. He got to spend time with his brothers and sister, joke a little and get loved on this took a couple of weeks last time, but this also means that he can get into more trouble. I just had to jump up and stop him from snatching out his 4th NG Tube (this runs through his nose and down his throat), so his now his left arm is tied down again. Actually while writing this post I have had to get up and stop him 4 times now, he has figured out that if he slides down the bed he can reach his head. This also makes him use his right hand more also, which he can now also get to his head as I can now see. Now make it 5 times. If there is a way to do it he has, and will. I am hoping he gets a good nights rest and stays out of trouble or not.

1-31-13

Cameron Update:
1-31-13 -9:30p.m.
Ok to say that we have turned the corner with him is an UNDERSTATEMENT!!!!!! First off this amazing SUPERMAN of a person has turned this hospital on it's head. Lets go back and remember where he was, 1.) Christmas day in a Coma with unstoppable seizures. 2.) MRI after MRI showing progressing brain damage. 3.) World Record Levels of Drugs administered at one time to turn off his brain. 4.) 20 days of Generalized Stetus Epiliptus Seizures which normal kill people in one day. 5.) Waking up while still getting over 100mg of Versed and hour when it only takes 8 to 12 mgs to knock down a grown man. 6.) Start moving a arm and hand while still on heavy drugs. 7.) Start communicating with friends and family at day 30, but drugs weren't stopped till day 35. 8.) Gets breathing tube take out once then put back in 4 hours later, then out again 6 days later. 9.) Day 35 start talking 1 hour after breathing tube is taken out for second time. 10.) Start move both arms, hands, legs, feet, and toes at day 32 thru day 36. 11.) Reading complex sentences at day 35. 12.) Sitting up and holding his weight for over 1 minute at day 36, when last time it took a week of hard work. All I can say is you're the most amazing, strongest man I know. I have learned alot from your my son, you're ment to change the way Hospitals think and treat patients. I am ready for class Professor Superman Cameron. I love you my son.

Cameron Update: 

1-30-13- 7:30pm; 

Well once again where do I start, Cameron has done it again. They have once again removed his breathing tube and this time it looks like it’s going to stay out (knocking on wood). I came to the hospital tonight to take Jenn some supplies and spend some time with Cam. Well at first he was more interested in his Cartoons then me, that was till I said I was going to give him a hand massage with coconut oil. Before I started I asked him if he could read what the jar said, “Coconut Oil Extract” is what Cameron said. CAMERON read the jar, CAMERON CAN STILL READ. So as I continued one of the hospital staff walked in who heard he was off of the vent and started to talk to me, I didn’t realize that I had stopped massaging his hand till I felt him massaging mine. What day it has been, he is showing more and more improvement every hour. Now as for his smile, he smiled and it was our Cameron. Now it's time for the work to start and him getting back home again.

1-29-13- p.m.
Cameron Update: 9:30pm; 
Cameron never seems to amaze me, Jenn said that today during one of his therapy sessions he moved his right arm, HE MOVED HIS RIGHT ARM, oh yea and he squeezed a ball with HIS RIGHT HAND. Oh yea he is getting strength back in his legs, so to show off he crosses his legs and pulls them up like when your in sitting position. No matter how much went wrong, how much damage, how long it took, how many tests, he is still fighting, and showing everyone that he is not a normal case or kid. HE IS AMAZING. I love you Cameron, and i will always continue to fight for you and with you.

1-29-13
Cameron Update: Cameron never seems to amaze me, his wiliness to try and help the nurses everyday even when his body is fighting against him is truly amazing at this MANS will to live. Jenn told me that while they were brushing his teeth he reached up with his left hand and tried to brush his own teeth. By the time they untied his left arm (he is in full restraints for his own protection) he had already lost interest (TEENAGERS) but then grabbed the suction tube and positioned it in his mouth for a minute or two so get the saliva out and because it looked like it felt good to him. There was anther MRI conducted late yesterday so we will have to wait to hear the results.

Cameron Update:
1-27-13 -3:50pm:
Cameron is on the Vent\C-PAP rotation, he still seems to get a fever once or twice a day but they give him meds and it comes down. I noticed that when they have him sitting in 35% to 45% position he seems to respond better and better. Today we saw his right foot and maybe toes move but only once. I give him a Manicure last night because he was scratching his stomach all up. Believe it or not they can cut you open, take parts of your brain but are not ALLOWED to trim finger nails or toe nails, go figure. He is starting to rip stuff out which is a good thing in my book because that means he's getting stronger. As of now he will respond to basic commands and questions, but as time goes it will really tell us what he will have to relearn. He worked so hard last time, got back into top shape and now were back at zero again. He's going to famous for how he strength and how he fights.

1-26-13 Update

Cameron Update:
1-26-13 - 10:00pm; Cameron had a pretty calm day today, he is still on the Vent, but the switching it between Vent and C-PAP to get his lungs ready for the next time they try to take him off. He has come down with a UTI now also so more meds. He has been fighting Fevers again today but not as bad normal. We are seeing that when they have his bed in a 40%+ position he seems to respond better and follow commands faster. This could be due to the change in pressure in his head because of the swelling that is still there. I hope for some rest tonight for him, he could really use some.

Cameron Update:
1-25-13 - 7:00pm
Cameron had a less eventful day today, he had his Physical Therapist LeAnn and Speech Therapist Dawn come bay to visit him today. They are 2 of 3 Team Members who worked with with over the past 20 months. His Occupational Therapist Michelle came by over the weekend. These three women have come many times over the past 30 days to see Cameron and us, this means so much to us in more ways then you know. Cameron is still on the Vent at this time but they are switching it back and forth on the C-PAP setting to give his lungs a chance to build up their strength again. No fevers as of yet, and still getting meds to fight the infection in his lungs. Cameron is following some commands with head nodding yes or no, squeezing of the left hand and some times raising of this eyebrows. The next week will be a tough week but if anyone can our CAMERON CAN.

Cameron Update:
1-24-13- 9:25pm
Cameron had a very busy day, around 1:30pm today they removed his ventilator and tube from his lungs. He had been breathing on his own for the best part of 24 hours with the ventilator on the C-PAP setting. Well unfortunately while doing a routine suctioning of his lungs through his nasal passage around 6pm tonight, his right lung collapsed and they couldn’t get it inflated manually so they had to put him back onto the ventilator. Once that was done they were able to get his right lung inflated again, then that led to them getting some test results back from an earlier sample of lung gunk showing he has an infection in his lungs. So he’s back on Antibiotics and fighting a high fever again. They said they will try to get him off of the vent again sometime early next week.

Cameron Update 1-24-13

Cameron Update: 

1-24-13

I have gone back to work again and playing Mr. Mom at home with Cameron's siblings during the week while Jenn takes the week shift, I will relieve her on Friday and take the weekend shift. So now onto the man of the hour THE REAL SUPERMAN CAMERON. Yesterday they switched his Life Support Ventilator over to the C-PAP setting, what that means is that he regained the strength to breath on his own. So today the real work begins for him, they are going to EXTUBEAT him, this means removing his breathing tube and finally hearing our sons voice for the first time in 30 days. Cameron has done it again, when no one in the Medical World thought it was possible. This is one of hardest times in his recovery, it's not like you seen on TV trust me. It will take a week or two for him to get somewhat of a normal sounding voice, alone with the ability to clear his lungs of the thick secretions that are built up, this is caused by the a Ventilator. During the next week they will see how he does with food and water, they will determine this with a swallow study, he will sit in an X-Ray Machine and eat and drink while they watch where it goes, to his stomach or lungs (I watched this last time and its something out of a Sci-Fi Film). They did anther MRI yesterday afternoon but haven't told us any of the results, so unlike the rest of his MRI's conducted no one has came running into his room to give us more bad news, SO NO NEWS IS GOOD NEWS. His progress on moving and following commands is slow, tedious, and sometimes frustrating. But there is no time for breaks because his window of recovery will have to be faster and harder so to prevent long term effects to the undamaged parts of his brain. I will update more on his recovery progress more often to help brighten everyone's day. Thank you all for the continued support. Everyone who has sent words of support, cards, prayers need to know that you're just as big in Cameron's recovery as his doctors are.

1-22-13
This was the post my wife did last night. Cameron is starting new tricks and we are reminded of his strengths and our blessings....He had been moving his left arm, but today he started to move his fingers on his left hand. Doing this on his terms (normally lying there quietly and sort of experimenting with what he is able to do). Cameron also has shrugged his shoulders and moved his legs a little (just turning his feet in to each other a little) he hadn't moved them except when he would cough. I know that this is horrible and I've been so angry that our family not only had to go through this once but now twice....Well now I'm feeling selfish....A father has lost his family this weekend. His wife and two children were in a car accident. His wife and one child died at the accident sight and the other child was brought to a room down the hall. Tonight his child has passed away. My heart aches for him and his family. I have to say when Jenn told me this I was brought to tears and my knees, the pain you see day after day in here can change the way you think. And when so many with so little give so much it shows the world that we're not lost but clouded by our lives. Find someone today who needs hug, a complement, help at work, short of money at the store, this is how our Cameron is everyday of his life and will continue.

Cameron Update: 

1-21-13 -8:20pm; It’s been a couple of big days for Cameron, they finished taking him off of all the sedation meds last night. Cameron had already started to show signs of waking up. Well Cameron is very awake now and showing us some good signs, following simple commands. After leaving today when Jennifer came on shift for the week she asked him if he wanted to watch cartoons and he shook his head YES. My son said yes to cartoons, today is very happy day. We are now at the next phase in his recovery, over the next couple of weeks we will learn what he can and can’t do. Seeing my boys beautiful brown eyes lock onto my face was the best feeling. They will do anther MRI on Thursday to check the status of the Blood Clot in his brain, the swelling, and the White Matter Disease. —

Cameron Update: 

1-17-13 - 9:30p.m. 

 WOW where to start, well today we finally had our meeting with Cameron’s Team and as always we still don’t have the answer to what is doing this to him. He still has been seizure free for the past 80 hours. Just like any GREAT MOTHER Jennifer requested an MRI to be done prior to the meeting to check on the progress of the swelling and the White Matter that had been increasing in his brain. Well the good news first, the swelling has gone down, and it looks like the White Matter hasn’t gotten worse. Now the bad news, they found a massive blood clot the runs from his Juggler in his neck around the side of his brain to the back of brain and into the center of his brain. He still has blood flowing thru which is plus. This is being treated by blood thinners at this time, alone with monitoring for any neurological changes. There is a chance of bleeding in his brain because of the Angry Brain Syndrome (Trade Marked 2013) but they are watching him closely and I’m watching them CLOSER

Cameron Update: 

1-15-2013- 9:30pm

 Cameron final has had a couple of calm days, as of Sunday morning the seizure activity has subsided. This was accomplished by the extremely high dosages of drugs he was put on. They started to reduce the Ketamine today and should be completely off if it by noon tomorrow,, this will be the first of many steps they will conduct before they try to bring him out of his coma. We have had a lot of the tests come back and just like last time they show nothing. The next 7 days will be very stressful on Cameron’s brain and us, as long as the seizure activity doesn’t come back then they will start to reduce the Coma Drugs. We will update everyone as often as we can. Thank you for continued prayers, thoughts and kind words, every one of them gives us strength to fight harder and harder.

1-14-13- 7 a.m.

Day 21 of this nightmare, still dealing with Stage #1 and #2 of the emotions. Its hard to understand when doctors get excited about Cameron finally getting to a calm state for a brief period when he is on 4 times the normal levels of drugs. When his Phenobarbital level is 105 and the safe level is 40, when the normal adult level for Versed is 12mg per hour and he is at 150mg per hour, and when 40 mg per hour of Ketamine is safe but he is at 350mg per hour. So excuse me for not running down the halls jumping for joy, lets remember that the levels he is at can only sustainded for a short period of time. I am tired of people telling me it's going to be alright, that what we're seeing on his EEG isn't Seizure Activity when two of the N urology Teams say it is. One thing I know for sure is that last time at day 21 Cameron was already recovering at a fast rate. All I want now is to start that process again so my anger will change to joy.

Cameron update:

1-12-13- 10:30pm

Well Cameron I would have to say had a better day with no reports of runaway seizures, but still some activity they are still watching closely. At this current time he is on even more drugs than last night, he is up to 150mg per hour of Versed, 375mg per hour of Ketamine, and a lot more. You should see the faces of Nurses at shift change when they are given the report on him, they think it’s a joke. The first two drugs are just to try and to turn his brain off. Go figure a teenager not doing as he is told, but the real truth is that if we can’t achieve the Burst Suppression State that they want then they will have to drop the Ketogentic Diet and go back on the Pentobarbital. At this time he gets very angry when someone touches him, talks too loudly, or hears a loud sound, the brain is programmed to respond to these sounds. So when his brain does respond he gets out of control and starts to seize which is causing more damage to his already sick brain. Well it's going to be a long night I will check in tomorrow.

Cameron Update: 

1-11-12 -10:00pm

Cameron has had a lot going on the past couple of days, they moved his room to a quieter part of the floor, and they have made some more major med changes. They are now at 100mg per hour of Versed (normal adults get 6mg to 12mg per hr), 200mg per hour of Ketamine (a Hallucinogenic Horse Tranquilizer), and a 5 other ones which if any normal person had just one of his it would put us out for a day or two. These are what they are using to keep him in his coma, HOWEVER his brain activity is still going too much and if we can’t get it down then he will continue to have break thru seizures. They have also put him on a low stimulation, low light, and low noise level isolation to also help out with his seizures. At this time they still don’t have any answers. As of now I do believe his last seizure was at 2am this morning so 3 more hours to go for a full 24 day without seizures.

1-10-13- 9:30 p.m.

Cameron Update: 9:30pm; Cameron has had a couple of rough days with “Break Thru” Seizures, these shouldn’t be happening when he is a med induced coma. So they are changing up his Meds that keep him in his coma, they are going down on his Pentobarbital and going up on his Versed, and cut out all light and nose in his room. They are cutting all of his Sugar and Carbs out of his diet and the Pentobarbital has sugar in it, so Versed will be increased to an extremely high level to keep him in a coma. Also they put one Nurse in his room at all times to monitor his EEG to make sure there isn’t more than 2 burst of brain activity per 12 second page. This also has a high risk of lowering his blood pressure to low so they will have be prepared to give him drugs for his heart. This is going to be a long three days, but they have to get his seizures to stop so his brain can heal and he can wake up.

1-9-13 

10:30pm

Cameron Update: 10:30pm; Well it's been one of those days again, we thought we had some sort of answer that might be coming our way but in the 8th hour the idea was shot down. They thought Cameron might have a Rare Syndrome that would require a Bone Marrow Biopsy, but after meeting with the team they ruled that out too. As of now his condition is not getting better, he continues to have seizures daily, along with fevers (lower for the most part), and pupil changes that makes even the most veteran nurses jump. When a kid can make shapes other than ROUND with is pupils you would think its a clue but a certain Nuro Dr. doesn't think so. Well it's not normal and it's not getting better. Jenn and I will be hard at it tomorrow pushing buttons and pissing off the smart people till we get something to make us feel at least a little better.

Cameron update 1-8-13 11.30 P.M.

Cameron started the morning with having a below normal temperature. This first happened yesterday, but thought it had something to do with Cameron having the surgery with the anesthesia mixed with all the current anti-seizure medicines that he has been on. Now it’s the second day of this lower temperature, we are hoping that it is not a new thing that he will be adding into the mix. They have had to warm him with a warm blowing blanket. So far today Cameron only got a temperature as high as 100. They did not need to medicate him they used the cooling pad and that seemed to work on getting his temperature down. Cameron since 7A.M. had a couple of “unusual EEG activities” He received Advent once and this seemed to settle down. So far nothing has come back positive from pathology or any labs that have been sent out…As you know we have asked for other physicians to consult on this case (A new set of EYES) We had Cameron’s records sent to a neurologist in Miami over the weekend. We had a neurologist come in from John Hopkins come in and get information from us. Cameron now has officially started on the ketogenic diet (formula form). There hasn’t been too much excitement today…which is good after the roller coaster that we had yesterday. Thank you for all the prayers and positive thoughts!!!

January 7, 2013

Cameron Update: 8:30pm; Cameron had his Biopsy of the muscle tissue today and anther MRI. It will be weeks before we get back the results for the Biopsy. As for the other pending tests they are STILL PENDING. As for the MRI well that’s a different story, it shows that there isn’t any improvement from the one done 8 days ago. It actually shows that it is worse, and he is showing more “White Matter” now in the right side of the brain. STOP don’t get all out of control LIKE I DID TODAY, because “White Matter” means just “White Matter” not sure what it is and what the affect will be. Of Course this happened around the same time Cameron started to have a seizure and decided to make his pupils look like Stars and Moons (and that’s not a joke). Needless to say that today was an up and down roller-coaster of emotions. As of now Cameron is stable and hopefully done playing “Pictionary” with is pupils. Jenn and I thank our family and friends who held us today and gave us the straight to get over today's humps.

January 6, 2013

Cameron Update: Last nights update was sent a couple of minutes to soon, 5 minutes after the post Cameron started seizing again. Then 12 hours later he started with a high fever and seizures again. At this time he still has a low grade fever, and we still have no answers. Cameron will under go anther Biopsy Surgery in the morning to take Tissue Samples of his Muscles, get another MRI, meet with The John Hopkins Nuro team, and starts on a Ketogenic Diet. Please let me say that Jenn and I are in goods hands with the All Children's Staff, and their network of doctors. With that said we are SCARED AS HELL for our son and our family. We hope for some answers this week and Cameron's body starts to fight this.

January 5, 2013

Cameron Update:9:00pm; For the first day in a while he didn't have a fever of seizure activity, but I am saying that out loud because he right next me (teenagers have a mind of their own). There isn't much for news except for Monday they will be doing a muscle biopsy, an MRI, and starting him on a Kenogenic Diet (all protein and no Carbs or Sugar). The Nurology team believe that Cameron might have "FIRES" (Febrial-Infection-Related Epilepsy Syndrome) now before you go and do research on this just be warned that what you find isn't something you want read. It's a long shot on their part but it is the only thing close, the cases are very rare and don't show alot of similarities to Cameron. Also each one of the for case studies were treated with only one of following ways. AED (anti epilepsy durgs), Steroids, IVIG's (Intravenous immunoglobulin ), and BSC (Brust Suppression Coma). Cameron is on all four of these at this time. Diagnosing Cameron with is hard because all 77 cases were done under a Clinical Study and not Idology. Please be aware that we researching Rare Diseases the information is rarely good, we are being hopeful.

January 5, 2013

Cameron Update:9:00pm; For the first day in a while he didn't have a fever of seizure activity, but I am saying that out loud because he right next me (teenagers have a mind of their own). There isn't much for news except for Monday they will be doing a muscle biopsy, an MRI, and starting him on a Kenogenic Diet (all protein and no Carbs or Sugar). The Neurology team believe that Cameron might have "FIRES" (Febrial-Infection-Related Epilepsy Syndrome) now before you go and do research on this just be warned that what you find isn't something you want read. It's a long shot on their part but it is the only thing close, the cases are very rare and don't show alot of similarities to Cameron. Also each one of the for case studies were treated with only one of following ways. AED (anti epilepsy drugs), Steroids, IVIG's (Intravenous immunoglobulin ), and BSC (Brust Suppression Coma). Cameron is on all four of these at this time. Diagnosing Cameron with is hard because all 77 cases were done under a Clinical Study and not Idology. Please be aware that we researching Rare Diseases the information is rarely good, we are being hopeful.

January 4,2013

Cameron Update: 10:30pm; He is till in a coma, and still no change. Cameron has been given his nurses a run for their money lately. He still having seizure activity once or twice a day, along with 2 to 4 times a day of cleaning out his lungs that fill up with junk. But for some reason they all fight to have him, we love nurses that love our Cameron. I want to thank the the people who have already answered the call to lend their Professional Medical help. Once the rest of the test come back then we will make sure everyone gets copies of the results. The days seem to be getting longer for Jenn and I as we wait to hear something, our mental state is that of someone who needs to be in one of those special hospitals. Our hearts are feeling heavy and tears are coming more often, but with the support of our friends and family we will make it thru this again. Doctors may give medical support but you give us the push and edge we need to fight strong everyday. We thank you all.

January 4, 2013

Cameron Update: 10:30am; Cameron has had a couple of ruff days, he is getting fevers at least once a day and is having issues with is O2 Levels on his vent. They have to come in a couple times a day and clean out his lungs to get his O2 levels up. We still have no answers to what is doing this to our son. We are asking for help from any Medical Professional across the country if they have seen or heard of a case like this to please contact us or the All Children's Hospital St. Petersburg Fl. Please understand that his Team of Doctors are trying everything possible to find out what is doing this, they are using Research Labs across the Country and Outside of the Country. Cameron needs help to stop this from hurting him any further.

January 2, 2013

Cameron Update:9:00pm: Well he is still in a coma but has started to have seizures again, the started around 4pm today so they went up on his Pentobarbital again. His pupils were different shapes and sizes, not what you want see or here when you want them to wake him up. Also some of the Biopsy results came in and they say he is doesn't have Meningitis, or Encephalits. The rest are still pending. At this point we are getting little to no information other than there are trying to make him stable and go one day without a fever or seizure. Jenn and I are both staying the night to due to him acting up today, our Nurse for the night had him the time we was here 20 months ago. She has grounded me from watching his EEG because I have an issue pushing the button to log Seizure activity. I blame it on my all the coffee I am drinking to stay awake. Well time to go watch the EEG Channel, I hope our boy gets a good nights rest. Until next time Jenn & JP.

January 1, 2013

Cameron Update: 8:30pm; He is still stable and in a coma, for how long is the big question. Each day they tell us a couple more days, and when that day comes it is a couple more days. We are still waiting on the Biopsy results, which we hope will come by the end of the week. Even then we are still likely to not know anything, if by some chance we do, then we hope there is a treatment for whatever is trying to take our son Cameron from us. A lot of people have asked us how we’re able to stay so calm at a time like this, well we have you all fooled. Jenn and I find that if we break down after his visitor’s leave it makes for a calmer visit and for those who have made Jenn cry, we’re going to put an “I Made Jenn Cry” money jar in his room to pay fines. Also knowing that he has beat this once before when no one else has, gives us hope that he will wake up unharmed. That doesn’t mean we haven’t talk every scenario out over and over, and for those of you have been our soundings boards for some of these conversations we thank you. Without friends, family, coworkers, and anyone willing to lend an ear we thank you and please don’t stop. This is going to be fight, and if they don’t stop this he will most likely go thru this again and again. He needs to strong and ready to fight every time this beast rears its ugly head, so Jenn and I need to be strong,so don’t give up fighting right alone side with us. Until next time from the front lines Jenn and JP

December 31, 2012

Cameron Update: 11:22am; Cameron is out of surgery and back in his room. The Nuro Surgical Teams says that his brain was very angry during the surgery, he had about 100cc of blood loss (nothing to be worried about). They took a Brain Tissue sample, Skin Tissue, and part of the Artery from the left side. His MRI showed reduced swelling in the brain and reduction of his rash, they think the Steroids are working. Our boy is a champion fighter. We will update tonight.

December 30, 2012

Cameron Update: 8:45pm; Cameron had a better day today for the most part, other than a fever that seems to keep coming back everyday. For a number of days we have seen alot of active brain waves on his EEG, and yesterday he had chest movement while they were cleaning his lungs out. That would great if it were time for him to wake, but he is resenting the Pentoborpital. They have gone up on his meds 4 times in the past day. Leave it up to Cameron to play by his own rules. We thought that they were going to cancel his surgery due to his fever but they don't want to waste any time. So around 6;30 am we will be heading down to get an MRI and off to surgery at 7:30am. This will be anything but routine for the surgical team, they have ordered to units of blood just in case alone with a clotting factor transfusion. Once the biopsy is done, it can take up to three weeks to get the results. Most of the recent samples that they have taken have been sent other countries for testing because they very rare. Once he is out surgery and back in his room I will update everyone. Until then keep up the good work. From the front lines Jenn & JP

December 29, 2012

Cameron Update: 9:33pm; Well the last couple of posts have been a little vague on what his condition, and or status was. There has been a lot of information thrown at us in past couple of days and we needed time to digest it and talk to our family first. The MRI that was taken on Christmas day shows a large amount of NEW Atrophy to his brain compared to his January MRI (1 year ago). These was explained to as a Progressive Atrophy the first time, but later explained that it could also be Residual Atrophy. The difference is Residual Atrophy won’t cause any more damage to him, but Progressive Atrophy is unstoppable and will continue to damage the brain. There is no way of knowing which one it is at this time. That was part one, part two is the results of his latest MRI’s show that his brain has started to swell on the left side and shows more damage to is Left Temporal Lobe. So at this time they have increased his Pentobarbital to keep him in a coma, started him on Steroids, IVIG Transfusions and scheduled him for Brain Biopsy Surgery on Monday. If that wasn’t enough he started to have some issues with lungs, the lower left part of his lug collapsed yesterday but they were able to clear the blockage out last night. Then today he had some issues with oxygen levels, this happens with patients that are on Ventilators. After an hour of cleaning out the build up in his lungs and scaring the crap out of us and his team he went back to normal, but is requiring a higher Oxygen Saturation (he was at 30% but now he is at a 65%). Well that’s enough for tonight, until next time please keep up the good work. Jenn & JP.

December 29, 2012

Cameron Update: 10:30am; Cameron is still in his coma, and his vitals are still stable. The have started some new medications and look to continue them for some time. He is now scheduled for Surgery on Monday, they want to do a Biopsy. Sorry for lack of information on this post, but I should be able to give more depth and details on condition later today.

December 28, 2012

Cameron Update: 4:00pm; Cameron is still in a comma and still stable, the plan is to start weaning him off of the Pentobarbital tomorrow. Today has been very busy, they have brought in new team members to his team to try and help figure this damn thing out. They are looking into an Auto Immune disorders and vascular disorders. They did a second Spinal Tap, and he is now down getting his MRI’s done. Jenn and I are waiting on the Immune Team to come and meet with us. As you can see they are grasping at anything to try and figure out what has caused this for a second time. To record in the past 30 years this has never happened, Cameron has these people working day and night to give us answers. Sometime tomorrow we are going to have a meeting with the whole team so we can ask our questions to everyone at one time, and get some sort of answers. We will of course update you on that meeting after it happens. Until next time keep up the good work and thank you from Cameron’s Front Line Defense Team Jenn & JP.

December 27, 2012

Cameron Update: 10:15pm; Well today was mostly uneventful, he is still stable, and in a Burst Suppression Comma.They will start to wing him off of the Pentabarbotal in the morning. If no seizure activity comes back then we will be waiting on Cameron to wake up. They ran more tests and we have more happening tomorrow, a three different types of MRI's. Once we have the results of the these we will then we are requesting a meeting with all of the doctors on his team to sit and give us some straight answers.

December 27, 2012

Cameron Update:8:45am; Cameron is still hanging in there, stable and in a comma. At this time they are still aiming for Friday to Sunday to stop the Pentabarboltal Drip. Just remember that for everyday he is given this it takes a half day to get out of his system. He had some abnormal brain activity last night and this morning but the Nuro Team feels he is fine. Infectious Disease is still running tests, also they have ruled out Influenza but they urge everyone to get their shot because they have seen a huge number of cases this year. All other status haven't changed at this time. —

December 26, 2012



Cameron Update: If any lost three trouble makers i found them in Cameron's room. A good laugh with friends and family is needed during times like this. Thank you. — with Lauren Francis, Jennifer Plouffe, Charlene Kingsley and Carrissa Kemp Johnson.

December 26, 2012

Cameron Update: 7:10pm; He is still in a comma and looking stable. They still are stumped at what is causing the rash all over his body. He has started to show visual swelling in face and head, they are monitoring it very closely. They put in a NG Feeding tube and he is now getting some food, he still has had an intermittent Low Grade Fever that they to continue to treat. I will be on the night watch again so I will continue to update.

December 26, 2012

Cameron Update: 11:25am; Morning rounds have been completed, Nuro Surgery, Neurology, Infectious Disease, and countless others. They are monitoring a rash that is covering most of his body, as always all tests have come back negative for everything so far. The goal is to stop the Pentobarbital this Friday if he stays stable, with this medication it has a half life (if given for three days then 1.5 days to be out of his system). Then it will be up to Cameron to start breathing on his own, then wake up. Please note that last time it more than a week to wake up. We won't know the extent of trauma if any to the brain until then. Jennifer and I thank everyone for their prayers and kind words, that is fuel for our tanks. We love you all and thank you.

December 26, 2012

Cameron Update: 5:30am: Cameron had some seizures last night but they just increased his medication. As of now his is in a "2 to 1 Burst Suppression" Comma, for how long will depend on how well his body fights this Virus. BECAUSE now they say the Spinal Fluid is NEGATIVE for Meningitus, does any of this sound familiar. Once the body successfully kicked the Virus then they can talk about bringing out of the Comma. They think 5 to 21 days......

December 25, 2012
 
Cameron Update: This was taken in his room off of the EEG camera feed. His twin brother holding his hand and talking to him, a brothers love is unbreakable in times like these. 

December 25,2012

Cameron Update: As of now he is still having seizures, still on Life Support, and still unresponsive. They just upped his Pentobarbital; Pentobarbital is a medication that is used to induce a Comma. Once he is in a full Comma they hope the seizures will stop. They believe this was caused by the Viral Meningitis, the MRI has showed positive for Meningitis, but they are waiting on the cultures from his Spinal Fluid. Jennifer is going to try to get some rest while I take watch.

December 25, 2012

Cameron update: They put the EEG on, and before the were done the could see that he was still having Seizures, he has been seizing now for over 12 hours. He is now being put in to a comma again, for how long we don't know. We are scared.

December 25, 2012

Cameron Update: The MRI showed that he has viral Meningitis of the brain. They are doing a spinal tap now to test for further virus. He is still on life support but has showed small signs of walking up.

December 25, 2012

Cameron was Bay Flighted to All Children's. He's on life support to help him breath, his seizures seem to have stop for now. They have him very drugged up.

December 25, 2012
Cameron was rushed to the hospital this morning, he had a massive seizure this morning. They are waiting for the helicopter to Bay Flight him to All Children's.

December 22, 2012

Cameron Update: Cameron is still fighting this Virus, not sure of what it is yet. He has a high fever at night, but after a meds he seems to be fine. But we are at day four of this bug. For some people this isn't a big deal, but for us these are the same symptoms that started this in April of 2011. Al I know is that what ever it is it needs to leave our son alone.

December 21,2012

This is how swollen his head is. It looks like he has skull, but you be would wrong. They say this happens time to time, well lets just say it sacred the crap out of us.

Cameron UPDATE: We got home around 2 AM last night, it looks likes Cameron has caught a bug (viral), Tis The Season......... It seems that his body didn't want to miss Christmas or spend it in the Hospital. We are awaiting a call from the Surgical Team to see what the plan is for rescheduling. This little guy has to be the strongest MAN i know, he never wavers in the face of trouble, me on the other hand I sit there holding his hand and cry like a real man (a baby). I will keep the updates coming once we get them......

CT number 100 and counting. Now we wait for the test results.

 

Cameron wanted everyone to know he is a trooper, and thank you for the payers and thoughts.

December 20,2012

Cameron update. We are the emergency with him, he had a high temp again and also his head started to swell. The are running tests on him, and getting ready for a CT. Also his surgery has been called off. Once they know what's wrong with him and he gets better then they will reschedule his s surgery...............

December 20,2012

AGHHHHHHHHHHHHHHHHHHHHHH Can't catch a break for Cameron. Got a call at 12:30am from his Dad saying that Cameron wasn't feeling good. FEELING GOOD, the poor guy had a 102.5 temp and if Cameron wakes you up in the middle of the night he just isn't feeling good, he is feeling REALLLLLLLY BADDDDD. Now his surgery will most likely be canceled to when ever. I just want his pain to stop, and his life to go back to normal. He has made such great mile stones, I guess now we know we will be home for Christmas. I will update once we talk to the surgical team this morning.

December 18,2012

Cameron UPDATE, he had a Pre-OPP appointment with the Plastic Surgeon yesterday. As of now he is scheduled for Friday the 21st. We are waiting on the Prosthetic, which we found out is currently in GERMANY. The new skull is scheduled to leave Wed, and arrive in Jacksonville on Thursday, and if you want to know what a new Prosthetic costs, try $20,000.00 just for the skull. Cameron is looking at 4 to 6 hours of surgery, Dr. Ruas is one of the Countries best. They say if he is up and walking, eating and drinking they it is possible for him come home on Sunday or Monday. We know he will do just fine, he has this last hurdle and it's back to being a teenager.