A Place to Share
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A Place to Share |
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In 1996, we were just getting our life on track finally. Jerad had graduated from high school the tear before and was now in college and working part time. I had gotten a good promotion and life was going in the right direction for the first time in many years....for 19 years to be exact. In 1977, my world had fallen apart and I had never been quite able to put it back together. That year on June 22..my daughter's 4th birthday, there had been a car accident. My Mother had been driving and had both my children in the car with her. My Mother was killed instantly. My 4 year old daughter died 4 hours later in surgery and my 9 month old baby son had a concussion and 2 broken ribs BUT he would be fine. That 9 month old grew up amidst my very protective love. I had been divorced 2 months before that so it was just he and I. He grew into a fine young man and never caused me a moment of concern. I had finally begun to breathe easy when he
went out at night. Then that August night, that easy breathe was lost forever. My heart was broken all over again as I was told time and again that Jerad would not live through the night. The first 2 days are still a blur. I think I was in shock. Later I remember being told that he had lost control of the car...he was speeding....it had been raining...and as he overcorrected the wheel, he jerked it off the other side and into 3 pine trees. His high school friend on the car with him, walked away unharmed. We live in a small rural town in south Alabama with only a small hospital. Jerad was taken there first and the was airlifted by helicopter to a larger hospital an hour away. By the time I got there I had to be admitted with anxiety attacks and high blood pressure. OF COURSE upon getting there all we heard was that he would not make it. They did not even take him out of ER for 2-3 hours and put him in SICU. Eventually they did and that night turned into the next day and a sea of monitors and gadgets.....none of which seemed to really be making him better. He did have the 'bolt' to monitor the ICP which got up to around 40 and the monitor kept "beeping". It has been almost 3 years, and sometimes I still hear that sound in my sleep. That next day, Jerad's blood pressure dropped to 30 and they coded him and called the doctors who in a very cool manner told he was "dying" and they turned and left the room. There were about 20 people in his room at that time and prayers were uplifted for the next 3 hours-----up and down..up and down..until the roller coaster stopped and Jerad's vitals leveled off.That was just the beginning of 2 months of sheer hell. It was 2 months that I never left the hospital..AT ALL..I remained by his side, emergency after emergency. After 2 months in SICU, Jerad was then stable enough to leave the acute care environment but because he was still on a vent and showed none of the required criteria for them to think he was progressing, they could not send him to a rehab. In fact, the general consensus there was for me to "dump" him in a nursing home and get on with my life. Oh, how very badly I did want to get on with my life BUT Jerad was my life and and he was sick so my life was with him. So, I took him home....or to my sister's house. I was going to resign my job, I had no husband and no way of paying mortgage so my friends packed up our furniture and belongings, put them in storage. I had no money, no job, no husband, no home....BUT I HAD MY SON.
It took me 3 weeks at home to wean him off the vent. During that time, Jerad remained stable but had many of the "smaller" problems like UTI's, army surgery and shunt replacements (3). This was our educational period and when we TRULY became aware of the horrible nightmare we were in...the one with no known cure and not a lot of medical support or advocacy. We learned the unspoken rules and lifestyles of the Brain Injured and their Caregivers and we endured the never-ending, exhausting, heartbreaking battles with HMO's , insurance companies, physicians, Medicaid and Medicare as well as the eventual departure of friends and family members that "just could not cope with the situation. That is when I reached deep inside myself and found my faith...a faith in God that sustains me still today. Once I was able to get my feet back under me, I began to be able to "think" again and started making calls...because they do NOT call you. I was able to get food stamps and an apartment of our own through HUD..where I paid nothing. SSI and SSD kicked in soon along with Medicaid and I had a lot of donations that came in for the first year. We stayed there a year and then was able to buy a house through HUD and through the assistance of Head Injury and State Rehab programs have it handicapped accessible with a huge shower and barrier free lift in the ceiling. The house also had a pool and we were able to make the doors from the shower open up on the patio to the pool and we got a life for the pool. I also had gotten on line and found Caregiver Support lists and found comfort and support I had never known. Through one of the lists, I also found a Brain Injury Specialist that did not make "grand" promises BUT he did let me keep my hope and he supports me.
We moved into out home November 97 and that Christmas ..our second Christmas after Jerad's accident, God gave us a smile from Jerad. It was a wonderful present and it was the sign I had been waiting for and needed to renew my hope. They were initially few and far between but they soon became a normal, everyday expectation. Around May, he began laughing and following me around the room and he focused real good. He was holding up his head and moving arms and legs. I was keeping him up 6-8 hours each day. This was a far step from that first year when he did nothing...no recognition in his eyes...no moving..just eyes open.
This progress...though small to some...was so much more than I had ever been promised. Though not a completed miracle, Jerad was still a miracle to me.
Jerad still had his Trach and I had worked on getting it out although none of his Resp. Spec. worked with me on it. He breathes fine through his mouth and nose but in this last year he has developed something that might prevent us from ever getting it out....SEIZURES. He has problems when he sleeps..stopping breathing and he has problems waking up without seizing.
Today he is still only a level 3 sometimes 4 on the Los Ranchos Scale which was not too long ago still PVS status. The seizures are becoming a real problem however as it takes more and more medication to prevent breakthroughs. Where he was ALWAYS alert and smiling and laughing, now he is more subdued and I HATE THIS!! It is a slap in the fact again after all the forward motion we had made. BUT we still persevere. I will not be content to do this. I am currently trying to get him to an Epilepsy Center and see a seizure disorder specialist to do a study and determine what he needs. He does not have Grand Mal....partial or focal motor. But they are really taking a toll on him.
BUT WE KEEP OUR FAITH IN CHECK. I am so proud to say that after 3 years, Jerad has NEVER had a bed sore and although having a Trach has never had pneumonia. He is strong, healthy looking and not constricted nor does he have bad tone (yet). Other than 1 week of Rehab that I finally got his private pay insurance to agree to, he has been at home with me where I am his only caregiver. I understand full the overall prognosis but will fight till the end to see that my son receives every opportunity out there for any amount of progress.
I accept what I have....keep hopeful for the future..... and I am abundantly thankful to a God who still answers prayer...For this extra time I have had with my son is an answer to prayer.....Jerad is still a joy to me and a blessing from God.
Picture taken in May 99 is attached.....
Jerad's Mom.....Trisha Spivey
Email Trisha