The Hospital Vacation

An unexpected vacation came my way last week via a trip to the local emergency room when I experienced severe pain radiating from my shoulder down to the tips of my puffy fingers. The ER receptionist immediately had me whisked away in a wheelchair for a cardiac work-up, (not a recommended way to beat the line, but it was nice not have to wait!) The orderly swished me by all the cubicles so fast I did not have time to be nosy and glance in to see what everyone else’s commotion was about. The thing about the ER is that is houses REAL people with all their unglamorous appeal. No high heels or make-up. Unruly hair which obviously had not seen a comb in some time. Morning crustiness still in the eyes, line of drool down the side of the mouth. Bra-less, face contorted into an ugly grimace of pain, posture slumped over..and that was just ME, I could only imagine what everyone else looked like!

Once admitted to the cardiac ward, the nurses got right to work hooking me up to all kinds of do dads and thing a ma jigs. Their cheerfulness belied the seriousness of their work. I was comforted not only by their reassurance but also by the toasty, warm blanket that soon enveloped my body. Once the morphine took away the pain, I was a happy camper and willing test participant. Wheee! Off with another orderly for another test. Lay still like a sardine in a tiny metal tube while it sounded like the room was crashing all around me? Piece of cake. Electrodes super glued to my breasts? No problem, I wasn’t using them anyway. X-rays this way and that? Show me how to pose. (Those 5 modeling classes I took as a gawky teen finally came in handy!) Then there was the added adventure of being maneuvered, gurney and all, back to my room, bumping in and out of the elevators, around other patients and gurneys, and trying to fit through slim doorways all the while piloted by friendly orderlies. It was reminiscent of trying to scooter through Disney World with my daughter last May, and I tried to hide my silly smile lest the orderly think I was not in my right mind. (And, yes, the morphine was still working.)

Once back in my room, taking my blood pressure and poking and prodding for blood tests and glucose monitoring became commonplace at any time of the day or night. What an amazing staff of nurses and CNAs whose job it was to wake me only to poke me with a needle to capture my blood, and to do it all pleasantly when I felt less than pleasant for them having to do it. Although I tried not to be too crabby at them, my roommates were often less inhibited and grumbling was commonplace. Still, the staff smiled and carried on with quiet reassurance, seemingly immune to the barrage of complaints.

The most exciting thing for me was “room service”. Yes, “room service”, just like in a fancy hotel! Armed with an actual menu, I called down to the kitchen and my custom order would find its way to my bedside table. How amazing! Being a person obsessed with food, this was the highlight of my vacation. (Well, that and not being home to have to clean my house.) I carefully selected each meal; scrumptious omelet with tomatoes and onions, muffins and fruit, macaroni and cheese and broccoli with custard pudding, pot roast with salad with cake for dessert! Yum! It all sounded as good as I am sure it tasted, IF I were ever able to eat it when it arrived! Unfortunately, my food delights were delivered while I was away for one test or another. Imagine…meals being interrupted by medical procedures! What kind of vacation is that? The nurses offered to heat it up for me or to get me something else, but this seemed to be a silly request with all the important medical stuff that they had to do. When they took their jobs, I am sure that “waitress” was not in the job description.

Fortunately, it was the kind of vacation where the primary focus was my health; where what was going on INSIDE my body was more important that what I put INTO my body. With the utmost professionalism, the staff were unwaveringly pleasant, reassuring and kind. My medical care was top notch, and I was soon sent on my way home with expert instructions for the next chapter in my medical care.

Nothing could beat my hospital “vacation”. Next time I really want something as frivolous as a hot meal, I will go to a restaurant!The

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I’ve Never Been So Happy to be Sick!!!!

Just like everyone else’s, my life sucks from time to time! This past month has been one catastrophe after another. Marie, my daughter who is deaf, had again been hospitalized due to a dangerous PTSD episode. When in a dissociative state, she downed staples in an effort to kill herself. Ever the optimist, I was hoping against hope that her memories of severe abuse would begin to soften, maybe even heal. Alas, not yet…this will be a lifelong battle.

My son Angel, who had just begun to drive, was involved in a rear end collision. While slowing down for a red light, KAPOWEE! another car hit him in the rear, pushing him into the truck in front of him. He was briefly hospitalized for whiplash, but the emotional impact was even worse. Sleeping is a luxury he no longer enjoys; wild fears and thoughts flood his already befuddled mind. He has stopped doing the things he used to do, clearly depressed that his means of freedom no longer sits in the driveway. Through no fault of his own, his major pride and joy, his ability to drive around and help others all day, has been destroyed. The car, safe and well running, was bought new in 2008. The insurance company only paid the Blue Book value of $4200. Because we do not have additional financial means, trying to find a car for such a small amount of money has been a real challenge, and every day that goes by without a car for Angel pushes him further and further into depression.

Marie’s recent birthday party was ruined when Steven “acted up”…having a full fledge outburst. (He has a severe sensory deficit with which he can not tolerate crowds or things not in his regular schedule. I should have had the foresight to arrange for him to be elsewhere.) Steven punched a hole in the wall and swore obscene obscene obscenities, (I know most obscene obscenities, but he came up with a few that were even more hard core.) As he stormed off down the street to settle himself down, the damage had already been done. Mortified at this behavior that most of our guests had never seen, everyone left, making a bee line for their cars, children in tow. Marie, who in her deafness had not heard the commotion, had been fishing on the dock behind our house. When she turned around, everyone was gone! She was quizzical at first, but not being a real “people person”, she took it in stride, especially because everyone had left their gifts for her!

My own work has been more difficult. The agency has hired a public relations person, and suddenly referrals have been flooding in. With an exponentially increased workload, putting in 50 hours a week has not been uncommon. What HAS been uncommon is the wrenching ache that developed in the pit of my stomach. Food would spew out of my stomach a half hour after I’d eaten. I felt awful, but I trekked on, saltine crackers and ginger ale bottle in tow. All my life, stress did not bother me. I could handle anything! No problem! Que sera sera! A little stress was not going to deter me from my job duties! (Like a mailman, neither ran, nor snow nor dark of night would keep me from my mission.) But as the stomach ache dragged on, my enthusiasm waned. I actually became depressed! My life, as I knew it, was over… or so I thought…..

After two weeks of eating nothing but chicken rice soup and saltines, I dragged my depressed little body to the walk in clinic. Taking one look at me, they sent me to the hospital emergency room where an intravenous was started to alleviate my dehydration. Laying there, I watched several bags of liquid force fed into the little vein in my hand. They did many tests, some to which I may have objected but I was too weak to stand my ground. Lo and behold, I was really sick! It wasn’t stress! It was salmonella poisoning from an egg breakfast at a local diner two weeks previously! Although I lay there on the gurney still feeling ill, happiness filled my heart. I was sick, not stressed! Life would return to “normal”, including all of the small tragedies and heartbreaks and problems associated with having five children with disabilities. But I could handle it! Life would go on!

What’s In My Purse?

As the mother of children, especially children with disabilities, I have been a frequent visitor to emergency rooms. It didn’t take me long to realize that those hours spent W A I T I N G were tedious for my kiddo and myself. In fact, for my kiddos with ADHD, they could be dangerous. With Steven, he would open all of the drawers and fling the contents onto the ground, swing from the air hoses and climb on top of the curtain. He was generally uncontrollable in an environment that he saw as a playground and I saw full of dangers that would land him in an emergency room for a reason other than for that which we had come! I had a knot in my stomach and tears of frustration. The emergency room staff and I finally learned that the only examining room suitable for Steven was one for psychiatric patients…no drawers, no air hoses, no curtains to climb. That solved the problem somewhat…but the long wait was also a major issue. Visits to the emergency room often ran six, seven hours, and sometimes all night! What to do? What to do? What to do?

Alas, out of need emerged my “emergency room purse”:
*Extra copies of medical cards and social security cards; when under duress with a screaming child coming in with the ambulance, rummaging through my wallet for these items always seems problematic and adds to my stress.

* A written medical history for each child; remembering those pesky spelled medication names and listing hospitalizations and diagnosis are always nerve wracking, having them at your fingertips is priceless.

*Quarters and crisp dollar bills for the vending machines.

*Animal and peanut butter crackers along with some juice boxes so I don’t have to spend so MUCH at the vending machines. (Dispensation of food and drink dependent upon reason for visit to emergency room)

*Cell phone charger (hours waiting…games to play…people to call…need I say more?)

*A deck of playing cards, INVALUABLE for killing time, and also for great mother/child bonding.

*Manipulative toys for kiddos with ADHD…nothing like having that coil to twirl or that Rubik’s Cube to solve.

*Extra diaper/underwear and pants unless the child prefers to go home in a hospital johnny. (My daughter, Marie, actually loves the hospital clothing and has a whole drawer full…starting from small sizes when she was young up to the adult sizes she wears now.)

*Chap stick; the rest of me may look like Frankenstein’s monster, but my lips will be smooth and pretty.

*A large print, best selling book for me to read; when a kiddo is sleeping, (YAY!) the lighting may be dim and my eyes may be teary, but large print has always served me well.

My life has been spent trying to remain sane while raising children who can be difficult. Emergency room visits are always stressful and my mitigating solution is the “going to the hospital” purse.

Not to be confused with my “going to the movies” purse…

******

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

I KNOW there is a heaven.

I generally try to write upbeat posts…that with whatever difficulties we have, there is always something good to find.  This post will be different than the rest…it will be about my younger brother’s death.  It won’t be upbeat, but there is something good that has come out of it.  I KNOW there is a heaven. Without a doubt.  Proof positive.

My brother, for those who are unfamiliar with my “life story”, was born during the Rubella days.  My mother somehow contracted German measles while she was pregnant with him and he was born legally blind, severely hearing impaired, (almost deaf by the time he died,) severely developmentally delayed, with a cleft palate.  His life with us is what taught me such tolerance for individuals with disabilities.  My brother was disabled, but he was a joy to be around.  He had simple pleasures that made him smile, and to me, he life was as worthwhile as anyone else’s.

He was wholly incorporated into our family life and he did everything with us.  When we traveled extensively, his favorite activity was paying the toll at the toll booth.  My father would drive up to the booth so Curtis’ hand could reach the booth, and give him the money to put in.  He took great joy in reaching out to feel the basket and put the money in.  I swear my father always took the turnpikes with tolls solely so Curtis could have fun paying.

Around the time I grew up and got married, Curtis developed schizophrenia.  The simple pleasures he had in life were replaced by demons and aliens telling him to do things.  Curtis, ever the obedient soul, started to wander the streets in the middle of the night doing what these voices instructed, and there came a time when my parents had to place him in a group home.  We were fortunate in the fact that it was a wonderful group home, full of caring staff, and they took excellent care of him.  Every Saturday my mother, my kids and I would pick Curtis up and take him out for the day, usually to the mall to walk around.  He loved malls, especially riding up and down the escalators and elevators.  To be so joyful doing something so ordinary was one of his gifts.

My mother, who was very spiritual and had several supernatural experiences,  passed away two years ago, in November.  (Note a reblog I’ve attached following this one entitled Angels Among Us.)  Although we missed her terribly, my children and I continued our outings with Curtis.  All of my children loved him and would often argue who would sit next to him, or who would be his sighted guide. Their immediate, natural attachment to him amazed me given his severe disabilities and his disfigured head.  (His head was flattened on the back and he had huge ears that stuck straight out to the side.  My daughter who is deaf gave him the “sign” name, one that usually highlights a person’s individual characteristics, of Uncle Ears.)

We continued to take him out and he appeared to have his same zest for life until October of last year.  All of a sudden, his skills began to decline. Numerous medical tests were done and he was determined to be perfectly healthy.  At the mall, although he always had shuffled along when he walked, his shuffling turned to dragging his feet, then losing his balance, then having to use a wheelchair to get around.  Again medical tests.  No medical reason for his decline.

I remember guiltily the last time I took him to his favorite mall.  He was in his wheelchair, but I left the footrests in the car, assuming he could pick his feet up or shuffle them along.  I knew I was in trouble when I purchased his favorite ice cream with strawberry sauce. Because  he had lost the ability to feed himself,  I spoon fed it to him. He started to spit it out.  He didn’t want it!  His favorite thing to eat!  I new I needed to get him to a hospital, but had to bring him back to the group home first because they had his medical records. When I tried to push the wheelchair, his feet stuck to the ground. He did not lift them or shuffle along.  They just hung there.  If I pushed it forward, his feet would get stuck under the wheelchair.  With tears stinging my eyes, I did the only thing I could do to get him out of the mall.  I turned around and pulled the wheelchair backwards.  I could hear the thump thump thump of his feet on the ground and I started to cry in ernest. I had to pick him up to put him in my car, and he slumped over to the side with only the seatbelt keeping him from falling over.  It was obvious he had declined to the point that neither I nor the group home could take care of him. We took him to the hospital where he was admitted and again found to have no medical problems so he was placed in a nursing home. It was difficult to find a nursing home that would take him due to his numerous scary diagnosis; deaf, blind, schizophrenic.  He ended up in a less than perfect quality facility.  Due to frequent attacks of anxiety, when I first visited him I found him in restraints and his hospital bed mattress on the floor.  They were concerned that he would fall out of bed, so the had removed the actual bed and just left the mattress. He was alone, and a tray of food uneaten, (unseen by him) was in the corner of the room. They would come in and poke and prod him, give him medicine and needles, never treated him like a valuable human being.  He could not hear what they would say, the needle would pinch him, a blood pressure cuff would take readings, the thermometer would be used to take his temperature, and all of this would come at him out of the darkness and he did not know what was going on.  No wonder he was anxious!

Recognizing that with the swiftness of his decline he did not have much longer to live, I made the decision to stay with him at all times. I had to preserve his dignity.  We had done all we could so he could live a happy, dignified life, I could not abandon him at the end of that life.  With my being there, he no longer needed the restraints. My husband valiantly cared for all of the kiddos at home while I took care of my brother.   I spent my days sitting in his private room trying to coax some food into him.  When he wouldn’t eat the food they gave him, I would bring ice cream, pudding, applesauce and other things I knew he would like. I would lay on the floor next to him and rub his back or his arm, like we used to do.  If he could not see or hear me, I am sure that he could tell by my touch that I was there.

Within a week, we knew that he was fading away quickly.  My brother, who despite his disabilities had been as healthy as a horse his whole life, was dying and there was no medical reason for it.  Then I learned the reason; on his last night, while I was rubbing his arm, he turned to me, opened his eyes so wide it seemed as though he could see me, and he said plain as day, without the almost unintelligible garbled speech he used to have, “Mom is calling for me.  I will be going to heaven soon.” Then he shut his eyes and never opened them again. He died exactly one year to the date as my mother.

Yes, there is a heaven.  I know because my brother told me.

For those who might want to read more about my incredible family, the e-book The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane is available on Barnes and Noble, Amazon and I-Books.

Pain is in the Eye of the Beholder…Part 2

(I apologize in advance for this post not being in my usual upbeat prose, but the topic is a serious one.  Please feel free to click away…)

I mentioned in Part 1 that 2 of my sons have a high pain threshold, for two very different reasons.  Steven does not feel pain because his “electrical wiring” is messed up as he was born to an alcoholic birth mom who also used heroin and cocaine.  He has a severe sensory integration deficit where, basically, light touch hurts and pain doesn’t seem register in his brain.  It has made for an interesting childhood.

Steven has more stitches in him than Frankenstein, and we have been to our local emergency room so often that they have a cubicle reserved for us.  (In the interest of full disclosure, I have to admit that the latter part of that statement is exaggerated!)  An active boy, he would often fall off of his bike and get right back on without any acknowledgement of an injury.  The only way I would know would be when he would come home at night and a portion of his clothes, a sleeve or a pants leg, would be covered in blood.  Upon inspection, I would find the culprit: a long gash requiring stitches. Due to the lateness of the hour, all of the walk-in clinics would be closed, so off we would go to the emergency room.  (His last gash was from under his knee down to his ankle.)  The ironic thing is, because of Steven’s sensory integration deficit whereby light touch hurts, he would scream in agonizing pain when they would put the Novocain needle in.  A few times they allowed him to choose to have the stitches done without Novocain. On occasion, they have had to sedate him in order to put the Novocain in.  Steven has also broken a bone in his foot and his hand, noticed only when he was walking or using his hand oddly. Through his school program, he has volunteered for several years at a reptile education center.  He has been bit several times by the snakes. but would keep on doing his job, wrapping his arm or hand in a towel so the blood wouldn’t get their tanks all dirty.  As a young adult, he has learned to manage this unique quality of his, and he has not been injured in well over a year.  (Knock on wood.)  Of course, he has also become much more sedate…preferring video games and tv over BMX bike jumps! His wild days of adventurous antics are diminishing, along with his injuries.

Angel, who is fifteen years old now, has a very different and complicated reason why he does not feel pain.  He was abused so badly as an infant and toddler that he developed Dissociative Identity Disorder.  When he was being abused, he would develop an alternate personality which would not feel the pain.  Even though he is safe from harm now, the abused personality continues to do his job and protect him from pain.  The best example of this is the fact that Angel has had persistent problems with ear infections, but they could only be diagnosed by a doctor because he would never acknowledge the pain so we didn’t know they were infected.  One morning when I went to wake him up, his pillow was covered with blood.  When he sat up, blood was dripping out of his ear.  I called the ear doctor who saw him immediately.  Although Angel was about ten when this happened, and he  jumped happily up into the exam chair like a toddler, swinging his legs back and forth while he sat.  “Hi, Doc!” he said excitedly.  “Can I play with your thingy there that listens to hearts?” he asked as he reached for the stethoscope.  The doctor explained he needed to use the device to look in his ear. “Cool” Angel said.  “If you look in there can you see all the way to the other side of my head?” he joked, while he giggled.  The doctor looked in his ear and pushed his stool back in amazement.  He informed me that Angel had a fractured ear drum from what looked to be an extremely bad ear infection.  The doctor looked at Angel and back at me.  He said it was unbelievable.  Not only is an ear infection painful, but an ear drum ruptured as much as his was would cause excruciating pain. He said he had grown men crying like babies when they came in with an injury like this. And there was Angel, grinning and swinging his legs back and forth in the examination chair, just like a happy toddler, (one of Angel’s personalities.)  On the way out of the office,  he even asked if he could get a sticker, and he chose the Sesame Street ones!  The doctor just shook his head in amazement!

The major downside to Angel’s situation, besides the obvious problem that it is difficult to determine if he is injured, is that a part of him DOES feel the pain. Because he does not acknowledge it generally, it goes untreated and the part that does feel the pain does so unnecessarily.  This may be very hard to understand, and possibly unbelievable, but the fact is, the part that feels the pain is very resentful that the “others” are safe and seem to lead a happy life.  After many years of counseling and better understanding his condition, Angel and I see the interactions between his “selves”.  The funny part is, his painful self will actually sabotage the other parts if they are doing something good or if they own something of value. Through counseling, he has been able to be very successful in school.  (His “smart parts” attend, and they would get a lot of attention for their good work.) As if jealous, several class projects were found broken in a heap on the floor the morning he was to have turned them in, and research papers would find themselves mysteriously erased from the computer.  Angel also had two laptop computers “stolen” in the middle of the  night from his bedroom. He wouldn’t tell me for a week or so, so I couldn’t search for them.  We could never figure out where they went!  He was sure someone was sneaking into his bedroom at night, but I suspected his part that had been abused was throwing them away.  We were never able to prove it because the garbage had days ago gone for its final journey to the dump.  I finally bought a lock and locked the laptop onto the desk.  A few days later, the laptop wasn’t stolen, but the keyboard was smashed to pieces!  Angel was also the proud owner of an IPhone that kept disappearing.  For days, even weeks, we couldn’t find it.  Then, it would pop up under the base of a living room lamp, in the bottom kitchen drawer under the towels, and once even IN a sock in the BOTTOM of the sock pile. Angel does not remember ever doing anything with his phone of this nature, but he does have a problem with memory lapses.  For a long time, even though he is fully aware that he has “parts”, he has denied the existence of this vengeful part because he could not imagine himself doing anything detrimental to his prized technology.  A few too many times of having his phone disappear, though, has convinced him that this part is lurking in the background…