Never Give Up

21
Aug
stock-footage-hospital-doctors-consulting-over-patient-x-ray-film-with-radiologist

Summary – the cause – the injury – today’s quality of life

My son ,Wally was in a motorcycle wreck in 2009.he was wearing a helmet and it s the only reason he survived .he was resucitated at scene and life flighted to university of louisville trauma hospital(one of the best)had multiple traumas,broken pelvis in many places(and bleed in pelvis),all ribs broken,broken clavicle,compound fracture to left arm,basal skull fracture,and temporal fracture and 2 other skull fractures(but not a mark on face-WOW) had a collapsed lung. had to have a trach(2 months) to breathe,an ivd port to relieve fluid off brain(7 days),and a peg tube for nourishment(10 months). glasgow coma scale was 3. had subarachnoid hemorrhages in most lobes,and ventricles and cerebellum.also contusions,esp front temporal lobe,subdural hematomas in most lobes,and diffuse axonal injuries(shearing throughout)the worst blows were to the front,back and right side(hence,the worst paralysis is to left side).by the time i rushed the 3 hours to his side,the dr(chief neurosurgeon) gave him less than a 3% chance and was actually upset that i wanted him to continue to treat ,he wanted me to “pull the plug”( no insurance- did that play a role?).he gave us no hope.even one month later,he wrote me a letter that said” he is in a persistent vegetative state that is expected to be permanent.he is severely disabled with no expectation for recovery.”he remained in a coma for a month and then minimally conscious(vegetative) for a month. autonomic functions were shot, for over a month temp was between 100 and 104 and had to be kept on cooling blanket,uncontrollable heart rate and blood pressure(still all 3 are a problem). was racked by sympathetic storming(fight or flight response that won t shut off),horrible posturing–those 2 were so frightening for my familyto watch)i stayed in his rooms at hospital-even icu, the whole time he was there,only to leave to eat in cafeteria. lived and breathed those monitors and drove the staff crazy,advocating for his care.i kept journals everyday.finally,he started to track with his eyes,then finally a thumbs up,and one morning the doc came by in mid december and wally flashed him a peace sign…..screw you doc!!!! they should nt try to take away the families hope,but we never gave up. 2 days before xmas , was released home because had no insurance,ky didn t want him,neither did tn,the only other place that would take him was a nursing home many hours west of our house,and that was unacceptable…no therapy,no rehab!!!all i got was one hour of training on tube feeding at one oclock in the morning,the night before his discharge.the hospital did pay his bill and did pay for 2 months of hospital equipment,therapy and weekly nurse visit and enteral food….and then his medicaid kicked in .well,he had a little therapy on and off…we ve had to fight for every little thing.we learned whatever we could and read everything we could and have tried to take up the slack,but he has been so shortchanged by the system.he had learned to breathe on his own,talk(first 10 months, only whispered),eat( still has a slight choking hazard),read(but only couple words at time and it gives him a headache),write(mostly just name and it s unrecognizable to most)but still cannot sit up on own(no balance),barely Hold head up, and can t walk, incontinent, adynamia, but then gets angry and then has disinhibition, no focus, no concentration, no initiation, sleeps most hours out of the day, quadparesis, contracture of right knee, thyroid quit functioning, can t find words for things, inarticulate, delusions, hallucinations, has had 3 pneumonia’s and several bronchitis’, has some retrograde amnesia and NO short term memory…but with the right rehab, I KNOW could get a lot more function back. We changed ins. carriers in July but it s still state Medicare and now fed Medicare too- dual coverage, and we have built a slightly better team of drs for him but I m still fighting to get the help he need….NEVER GIVE UP

Please share your experience at the time you became aware of the injury?

I got a text from wally s ex girlfriend that she had heard he had been in wreck but didn’t know where….I remember my heart sinking and I collapsed on the floor

Tell about the experience immediately after the injury. Surgery? Coma

He had an IVD port in his skull to drain fluid….he was in a coma for over a month….he also had many orthopedic surgeries after he became more stable
Tell us about the hospital stay after the survivor was no longer in a coma

he was in the hospital another month but was minimally conscience ….he was in casts and had some therapy…had a trach and a peg tube for feedings…the hospital was many hours from our home so i lived in his rooms….my husband and mother came up on weekends to visit and bring clothes…i was so scared of the future for my son and our family
Tell us about the time in rehabilitation?

there was no rehab…he got a little pt/ot/st while minimally aware at trauma hospital but had no insurance….they said nursing home or go home…so i took him home

Tell us about coming home

He (we) got to come home 2 days before Christmas…..my sisters and nephew had come up from Florida…they decorated a little….I hadn’t shopped except a little at hospital gift shop….he was confused, scared, still minimally conscious…….my father and sister couldn’t handle it….wouldn’t come around much…..they have gotten better

Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma”

devastated,changed,upheaval,scared,sad.hopeless,hopeful,angry,fighting,struggling,unaccepting,accepting

Tell us about life today

doctors and more doctors….lots of complications and health problems…..therapy where we can get it…..it is hard
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference

have patience……everything will take forever….never give up….keep them at home if at all possible…..push them….love them
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