The TBI Chatroom |
On March 27th (98) my son left home with his youth pastor and 5 kids from our church to attend "Acquire the Fire" a Christian youth convention at the Tampa FairGrounds. Some 14, 000 young people were to attend from churches all over FL and from other states too. We live about 50 miles north of Tampa, Tampa being "the city" to us. At 2:30 AM our phone rang. "There has been an accident ...WE NEED YOU HERE" We arrived at the hospital, I don't think we spoke a word...we knew it was bad, and my husband and I drove the whole way in silence. Both of us entertaining our own nightmares. But I don't think anything could have prepared us for the sight of our beautiful 14 yr. old son....he wasn't cutup and bruised....on the outside. Let me back up, we were met somehow, [I'm not sure when he appeared], by a security man, he wore black pants and a white golf type shirt...but he carried a radio, so I new he was security....he thought Christopher was in the ER but when we got there, he had already been taken to P.I.C.U..
Pastor Jeff was there, standing there with one hand covering his eyes, his head down...praying....the youth pastor's parents were there, holding on to each other...she was wailing....he appeared to be in shock....they ignored us, because we had never met, their son had only recently become our youth pastor. But I knew who they were immediately, there was no mistaking the pain in their eyes.
The security man, a black man with light colored eyes that seemed to reach out....so startling were those eyes...a beautiful man. He says we have to wait for the chaplain. THE CHAPLAIN. I cant wait... I am hyper ventilating.... "Why do have to wait for the chaplain...Is my son dying???" It is the first thing I have said since we left our house almost an hour ago. He radios and the chaplain should meet us in the Pediatric Intensive Care Unit.
Now we are there, through an unbelievable maze of hallways that I will soon come to know like my own backyard. There is a young man in the bed, the first thing you notice is that he twisting his left leg incessantly...which is odd, because they tell us they are taking him into surgery soon to repair it, the femur is fractured....the pelvis is fractured. Twisting and twisting his leg..the other side of his body doesn't move at all..he is on a ventilator and every kind of monitor that they have....he has an "alfalfa" thing sticking out of his head...we later learn that it is an ICP.. an intercranial pressure monitor. Another machine bubbles constantly from a tube in his chest (punctured lung). He has rectangular plastic bags on his ears with a wine colored fluid in them. The bags have lines with CC markings...they are collecting and measuring brain fluid that is leaking from his ears. (Oh God can it be any worse than this)
This is our son.....this is our son.
Michael, his father says "oh Christopher"...and weeps. Each time he looks at him he says "Oh Christopher"...and cries again. They take Chris away to surgery...they tell us about brain injury...he has shearing at the brain stem and diffuse brain injury.....the next two phrases I will hear a million times "wait and see" and "he's young".
We follow them down to the 2nd floor, for the surgery....same waiting room my mom and I sat in for 6 hours when my da had back surgery. We make phone calls....try telling people your son is in a coma. My in-laws arrive before he is out of surgery. My mom just happened to be visiting us, so she is at our home with our then 12 year old son, Joseph. Today is March 28th, we live on a beautiful river...today is the boat parade...part of the Chasco Celebration. (Chasco Indians)
Tony's parents are in the same waiting room (he is the youth pastor) he is having a brain shunt put in. The helicopter pilot comes in, he tells us how much of fighter our son is, how they had to use paralytic drugs to intubate him. He tells us about the kids from the all the church youth groups (the accident occurred as they were leaving the fairgrounds) standing in circles praying....he never saw so many people praying...at first they didn't think Chris would survive the flight.
The pilot would later comeback every time he could during the month chris was in the coma.
We learn that of the 6 people in the car, 5 of them are in ICU. Slowly details of the accident surface. We learn that Chris was supposed to be in the other chaperons car...but he wanted to sit next to the pastor's daughter, so he got someone to trade with him. She has a broken pelvis too, and internal bleeding...Pastor tells me how she complains and complains...I look at him with tears in my eyes ...I don't have to say a word.....he apologizes, he knows, I would give anything to hear my son complain...I have no clue that I will not hear my son speak for another 3 months.
I cannot count how many pastors have come in during the first week, an incomprehensible amount of people are praying for our son.
On March 30th Chris moved his right foot...I saw it move...I was elated. (he continues to work that left leg, sometimes actually getting it between the bedrails)..just then 3 of my best girlfriends arrive...(Anne Marie, Linda and Maria). I am on cloud nine...I wonder if they think I have lost my "alleged" mind...how can I be so happy when my son is in a coma? Also, I failed to mentioned that he had lacerations to the liver and spleen and if his hemoglobin didn't stabilize, they were going to remove the spleen. I had just found out that his blood count had stabilized and the spleen stays!! I know this is not what they expected to find...but it's ok...they have plenty of time to see me wallowing in self pity and grief. Just not today.
On march 31st he moved his right arm....It's like a little gift each time we take a step forward, it's God telling me not to lose my faith.
A Youth group from Fort Myers comes up to visit...it turns out they were in the line of traffic leaving the fair grounds. One of the members, a 19 year old girl named Tasha was one of the first people at the scene. An EMT, she basically saved Chris's life...she could not get into the car...but she told me how she reached her arms through the car window and cleared his airway...he had aspirated some of Jessica's hair. There wasn't anything more she could do until Emergency services arrived, so she prayed in his ear the whole time. Although it was "family only" in the PICU, I took her by the hand and brought her into to see him. We just stood holding hands and crying. Tasha said, "I was so afraid he was going to bite me." Michael and I hugged her and thanked her.
On april 1st they removed the icp and took the bags off his ears. On April 2nd, they took him off of the ventilator. I had to leave the room when ever they did any type of "procedure" on him. My sister an ER nurse flew in from NY, (what a blessing to have an advocate with such medical knowledge) she stayed while they extubated him. Lynn (sis) said," I've never seen any one extubated, we only intubate them in the ER."
I returned to Chris' room when they were done and my sister who is known in our family for her huge blues eyes, opened them wider then ever when she told me, "he opened his eyes". They were closed again. It's a lot less crowded in the room now with out the ventilator. They removed the catheter too.
April 4th ...they remove the chest tube. Finally that bubble machine is gone! But he has those pneumatic stockings on and they have a little air compressor that makes noise. Fevers continue, they tell me its normal with the brain injury...now all he has is the NG tube and they say he is medically stable. They want to put him out on to the pediatric floor. This scares me to death. I feel very safe here in ICU.
They move us out to the pediatric floor...his room has a fantastic view of the Hillsborough river and the Tampa sky line. At night the lights of the city are beautiful. He would love it if he could see it.
I can't describe to you the hours and days of waiting for him to move on the coma scale, and of the doubts that he would ever move up on the scale. At first our fears were, Will he live? now our fears were Will he live like this? He needed to be a level 4 on the "Ranchos" scale before they would transfer him to rehab. They talked to mike and I about transferring him to another facility. It seemed nothing more than a holding tank ...until he got to level 4. A friend who is a speech pathologist did some ground work to find out about the facilities. I thank God for her, because I was not retaining any information, nor could I leave to do research on the other facilities. I stayed at the Ronald McDonald House next to the hospital, I was in Chris's room by 7 each morning and did not leave until 11:30 each night.
With the information Diane gave us, we decided we wanted him to go to a rehabilitation hospital...with a pediatric wing that specialized in brain injury and coma stim.
On May 1 he was transported to Health South in Largo FL. He would remain there for 3 months. During that time he started to eat, pureed food, thickened liquids only. We would stroke his neck to get him to swallow..... like you would a motherless kitten. I remember counting the swallows. The first day the speech therapist counted 3 and the next day 10. By the way, Chris was down to 119 lbs. at 6 ft 2" tall he looked like those photos from a concentration camp.
In the beginning of May he started communicating to us with thumbs up or thumbs down.
On May 11th, depression hit and he refused to transfer into the wheelchair to go to therapy. I had been staying at the hospital full time. I tried to convince him to go to therapy...I asked him..."Don't you want to get better? "Chris signaled "thumbs down". It broke my heart and I ran from the building and continued to run until I was exhausted. When I returned, they explained how he was trying to gain some control in his life, and that his refusal to go to therapy, however distressing, was not such a terrible thing. They started him on prozac.( He also takes Didronel for heterotrophic ossifiction on the left femur break and dilantin.)
During the next few week she started writing with his left hand on an erasable board. (previously right handed)
Health South really encouraged the family to learn and do what was necessary in the patients care. On May 26th Mike and I gave him his shower and other preparation for bed. His nurse came in and was teasing him, She said, "Chris your parents are going to make me lose my job!" Chris writes innocently.... "I'll take another shower" (because he really thought she would lose her job)
On May 28th he walked with a cane, and up and down the practice stairs in the gym! He also wrote on his board, "I want to go back to school".
During the night Chris gets out of bed....he had a peg tube inserted before we left Tampa General, and even though he was starting to eat, at night he was hooked up to a very high calorie liquid diet. He transfers himself into a chair, he is so thin that he can sit between the two sections of bed rails, from there he transfers himself to the arm chair. I am sleeping in the other bed. I wake up and can't believe my eyes...he points to the bathroom. He is wide awake...I give him his skateboard magazine and he looks at it until sunrise...he shows me the same pictures over and over.
6/1 he has a new swallow study...he moves from puree to mechanical grind...still needs thickened liquids.
6/3 my sister in law (rose) brings him a happy meal, I cut up the burger into small pieces HE ATE THE WHOLE THING. fries and shake too! He's up to 122 lbs.
I get the word from my job that I need to come back...I have only been home 4 times in the last 3 months....now I have to leave him. 6/14 Chris weighs 129.5 He writes, "Mom, help me with my talking" On June 16th Chris said MOM!!
On July 24th Chris was discharged to outpatient status, he receives home schooling. He plans on returning to school for 2nd semester. We have a long way to go.....he hasn't regained full use of his right side yet, but there is no stopping him. He's funny and tender...a tenderness that was lost to us as he became a cool teenager. We have to deal with the fact that he wants to drive, like any teenager. (he's 15 you can get your permit in FL at 15) And he was in JR-ROTC [AF] and wants to go into the Marines...I'm not going to be the one to tell him he can't. As far as I'm concerned he can do anything he sets his mind to.
Thanks for listening....I needed to tell someone. Last night when Laudra called and asked him to homeomming....we took another step down the path.
There is so much more to tell...but how much is too much. There's the neurosurgeon who said, "He might wake up." To which I replied, "I might not hit you" The head of trauma who went from a pompous ass to a human being before my eyes. The blessing of friends who cared for our younger son and our dog.....my friend actually took him to Germany for two months...{my son not the dog.} Ann and Joe Cramer who paid our son's airfare and without whom he would not have been able to go. The pastors of churches we had never heard of who came to minister to us without fail....as if God sent them in the room at the exact time I had lost all hope...I would turn around or look up from sobbing and they would be there. Bless you Rick and Jenny of Living Waters Church. And they continued to visit when Chris was transferred across the bay to largo.
My mother.....who drove back and forth from Tampa to New Port Richey on almost a daily basis, so that I could stay. Rita and Steve Graffagnino who became adoptive grandparents to Chris. The male nurse who closed the door, took our hands and prayed with us. The therapists; speech, occupational and physical who I don't even have the words to commend. The social worker at Tampa General who put up with me, and worked as hard as anybody did in Chris' behalf. The friends I made when I "hit the web" to glean any information I could on Brain injury. ...."The friends.....on Brain Injury: "Air-XAV8R-Olga-Demios" thank you.
Barb Caramico BCaramic@pasco.k12.fl.us