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.