Falling of the leaves and the passage of time

So, it has been quite a while since my last post. Baby Moo has been staying with us since her mommy is now on chemo for a relapse in her blood disorder. Needless to say, having a 2 year old around all the time is no easy task when caring for B-man as well. I love having her though. She is smart, funny and very intuitive. She can read most of her books with astounding accuracy. Five Little Monkeys and Goodnight Moon are her current favorites.

My best friend is now on hospice and has good days and bad days. You never know what each day will bring. Her "BFF" and 2 year old son are here from California, or Cali as she calls it, to help out with daily things like food and laundry. Moo has befriended this little Cali boy and enjoys playing with him.

My friend is more comfortable now with a steady diet of morphine and phenergan helping to ease the pain and nausea. Our days of lunch followed by retail therapy are over. Gone also are the days of hanging out at the other's house watching a good chick flick. Our interactions have come down to a 5 minute phone call each evening to find out if it was a good day or not and if she was able to eat anything. It is not enough. I want to BE there. Talking or not. I want to know how she really feels. I hate the verbal volleyball that we now exchange. It is meaningless. One day soon, even that will be gone...

Moo is missing her mommy and daddy. I cannot understand why her daddy cannot come and get her but he hasn't. B-man had adjusted rather well to having her around. He thinks it is funny when she cries or gets into trouble. She loves him and one of her favorite things is to ride up and down with him on his wheelchair lift in the van. This amuses her to no end. I only wish I could find something that amuses me that much.

The day after tomorrow is Halloween and Moo is dressing as Cylalella. That is 2 year old speak for Cinderella. She has a wand and glass slippers that light up as well as the prerequisite tiara and ball gown. I am certain that she will be more beautiful than the original character.

Other than the obvious, life is good right now. It is never great. I take all the good I can get though. B-man is not running a fever and the cough is minimal...that is excellent for him. But I am not bragging. Just making an observation. Oh and as his Neurologist says, "Knock on zee wood".

As I stated in my first blog, my subjects will often be off topic. Today is one of those times. You see, my best friend is dying. She has stage 4 colon cancer that was found two years ago. She now has been told that if her last ditch effort chemo trial does not work, she will have only about six months left. Just a short two months ago, she was a vibrant and pain-free woman that refused to let cancer win.

Today, she is in near constant pain and has admitted defeat. I could just kick her oncologist for giving her a "death sentence"! Yes, we all knew that stage 4 cancer is not curable, but at least she always had hope and determination. That is gone thanks to a doctor, once again, playing God. Why do they do that? How can they make that determination? I fully believe in the will to live. Why would you purposefully destroy that energy? As a nurse, I see things from not only a scientific view but an emotional one as well. My friend had that energy...until last week. I have seen her deteriorate more in one week than in all of the previous two years combined. Even when the toxic drugs of chemo ravaged her body, making her nauseous and weak, that spark of determination was still present. She has a cruise booked for Christmas, she no longer thinks she will be able to go. Just two weeks ago, she was making plans for a dog sitter and thinking about what clothes she needed to buy. Today, she is discussing writing letters to her daughters for all of their upcoming birthdays and special occasions for which she will not be present.

So what changed? I mean, really, think about it. What changed in one week other than her loss of determination? She lost her will to live, to fight, to beat the odds. I am so sad and angry. Until now, her 12 year old twins had no clue she was dying. What a burden to send with them on their first day of seventh grade. My guess is that she will live up to her death sentence. Her will to live is gone. She has, however, agreed to try this last ditch effort of a chemo trial. She does not hold any hope as she once did. I can see it in her eyes and hear it in her voice. She is defeated.

I love her and cannot think of life without her. She was my first friend when we moved to this town. As our next door neighbor, she invited us to their 4th of July party. I had not met her but my husband had. He said," you are going to like her, she seems really nice". We became friends almost instantly. She is so open and warm. She loves to cook and we have been her guinea pigs many times as she was trying out a new recipe. She is a wonderful cook and I can honestly say that most have been a success. I have learned many new dishes from her. She readily accepted B-man and has occasionally sat with him so Buddy and I could have a date night. We have celebrated most holidays with them and they have become not only our friends and neighbors but we consider them family as well. So how will I deal with the loss of this most important person in my life? I do not know how I will ever manage but for now, she is here and I will celebrate each day that she is alive.

In The Beginning

I realized this morning that I have not given much background information about our family. I prefer to anonymize this post as much as possible in order to maintain our privacy so only mine and my husband's actual names are used. However, I think it important that you get to know us and how our family came to be.

It was my junior year of high school when I met my future husband, Buddy. He had just graduated and although we had attended the same school, we were not in the same circle of friends. He worked at a fast food restaurant in our hometown that my best friend and I frequented while out "cruising" as we called what is actually just driving around looking for something to do. One night, we invited him to hang out with us which he did. I realized immediately that I liked him. I got his phone number and called. Yes, I was quite forward back then. Hey, I knew what I liked and went after it! It took a few attempts but eventually I got hold of him. He asked me out. We dated my entire junior year and the summer before my senior year, I found out I was pregnant.

Having already given me a promise ring several months earlier, Buddy told me he wanted to go ahead and marry me. My parents were devastated. I, being only 17 and head-over-heels in love, was excited yet scared. We were married in a small church service ten days later. It was a no frills affair that was attended only by close friends and family. I did have a wedding dress, bouquet and cake. That was about as fancy as it got. However, we were married none-the-less.

I had chosen to continue school and started my senior year that fall. I even marched with the band and hid my very pregnant belly with an over sized uniform. Our daughter, Sissy, was born that winter of 1982. In the spring, I graduated on time and with honors. My husband, holding our infant daughter, cheered me on as I walked across the stage to receive my diploma.

I completed a few college courses while caring for our little girl as a stay at home mom. Although I had no clue what I wanted to major in, I took basic classes that would be required for any degree. When Sissy was 3 years old, we began trying for another baby. I wanted a son. It didn't take long and soon, I was pregnant.

When I was about 20 weeks along, Buddy's grandfather had a stroke and we drove to see him in the nursing home in a neighboring state. Buddy's mother had instructed us to go to his home and take his television back with us since he would not be needing it. On the way home, Sissy was sleeping on the floor next to the TV and I was sitting beside her. In those days, seat belts were not a requirement. Upon turning a corner, the TV toppled over and just before it hit Sissy, I was able to catch it and push it back upright. This TV was one of the large console varieties so doing this was no easy task, it took a considerable amount of strength. However, I could not let it hit my little girl so in my mind, there was no other option. Two days later, I began to leak amniotic fluid.

My doctor put me on bed rest, told me to call him when I went into labor and he would do a D&C. I was devastated. I could feel the baby moving around and was horrified to think it may not live. I agonized for two weeks as I lay in bed waiting for the cramping to begin. It never did. Finally, I was persuaded by family to seek a second opinion and thankfully, this new doctor agreed to take me on as a patient. He explained that because I had been so diligent in my bed rest that I had probably staved off miscarriage. He instructed me to remain on bed rest for the remainder of my pregnancy.

For ten weeks I got up only to use the bathroom and take a shower every other day. It was difficult but my grandmother had come to stay and help out with Sissy who was a very active 3 year old. When I was 30 weeks along, I began to experience some pain in my abdomen. A quick blood count revealed that I had amnionitis which is an infection in the amniotic fluid. A Cesarean section was necessary to protect the baby from getting the infection as well.

Shortly before Christmas 1985, B-man was born weighing 3 lbs, 3 oz and a mere 15 inches long. I could hold him in the palm of my hand. Immediately the doctors noted deformities; cleft lip and palate, extremely small head, low set ears, rocker bottom heels, simian crease in one of his palms, wide set eyes and flat nasal bridge and worst of all, a heart defect. They explained that one of these alone meant nothing but all of these combined probably meant some sort of chromosomal defect. Possibly Down Syndrome or Trisomy 13. The latter of which is incompatible with life beyond only a few weeks. Test were done and sent to the lab. Our heads swimming, we struggled to take in all of the information we were given. It changed from hour to hour as they discover more problems and irregularities. Buddy began calling our son's neonatologist The Grim Reaper because he never seemed to have any good news for us.

Days swirled into weeks and then months. B-man's condition roller coastered almost daily. He had surgery to correct his reflux and insert a tube into his stomach that he could be fed through since he had no suck due to his cleft lip and palate. A sonogram revealed a small bleed in his brain which we were told is quite common in preemies and he often needed a gentle reminder to breathe. But through it all, we soon realized that although the doctors kept telling us we would most likely never take him home, he was still alive and thriving despite their grim predictions. The chromosomal tests came back normal and the diagnosis became multiple congenital anomaly. This simply meant they really did not know what caused all of his problems. We never lost hope and we gently encouraged him to keep fighting with each of our twice daily visits. In the mornings, I arrived to feed and bathe B-man. I had asked the nurses to save his bath time and first feeding for me. At night we all went as a family and Sissy was able to see and even hold her baby brother. It was during these visits and watching the nurses work around all of the tubes and wires to lovingly feed and care for these tiny little patients that I realized I wanted to become a nurse. Nearly three months later, he was finally ready to come home. The question was, were we?

Nothing has ever been easy with B-man. Least of all his care. He was not home long before his temperature plummeted and he was hospitalized. Over the next 2 years, I actually lost count of all his hospitalizations. There were infections, seizures, feeding problems, surgeries to repair his cleft lip, then his cleft palate, place ear tubes, repair an intestinal malrotation and finally, one to repair his heart. That was the big one and he was given a less than 10% chance of survival. Less than a day later, he was off the ventilator and breathing on his own. His little heart beating steady and vital signs strong. The doctors were amazed and one even wrote in his chart, B-man is amazing. The nurses were so surprised by the entry they excitedly showed it to us saying, "This doctor never writes things like that". Once again, B-man had beaten the odds.

Then, slowly, B-man began having a longer span of time between illnesses. Soon, he appeared as healthy as most "normal" children. Although, he was still unable to tolerate a regular diet. I began a quest to prepare the most nutritious and tasteful modified pureed diet that I could create. Unfortunately, it was about this same time that Sissy began having large bruises appear on her legs. She had recently learned to ride a bicycle without training wheels so I attributed the bruises to her frequent falls. Her teacher called me and suggested I have her seen by the pediatrician because of the severity of the bruising. I complied and we were informed that although testing would be needed to confirm, the doctor highly suspected Idiopathic Thrombocytopenia Purpura better known as a low platelet count of unknown etiology. We would soon find out that the disorder and subsequent treatments were as complicated as it's name.

Sissy received high doses of steroids that caused her to swell, gain weight, become moody and have a voracious appetite. Other treatments caused migraines so bad we landed in the ER. She screamed during the bone marrow aspirations while we held her and tried our best to keep her calm. Her veins became non-existent due to over use and it took numerous attempts to place an IV line. She lost patience and yelled at the nurses as well as us. Our hearts broke each time we got the news that a treatment had failed. The only cure for this disorder is a bone marrow transplant, however, her hematologist did not feel she was at that point yet. Sissy did have a few remissions, some lasting a few weeks while others lasted a few months. It would be ten years before she gained a remission that lasted several years.

At 3 years old B-man, who by now was obviously severely physically and developmentally delayed, began a school program and so did I. After dropping him off at his class, I drove to our nearby community college and began working on taking all of the required classes for nursing school. It took several years but finally, I was eligible to apply for the nursing program. During that time, Buddy who had also been attending college classes after work, graduated with his Bachelor Degree in Business Management. Two years later, I received my Associate Degree of Nursing and passed the NCLEX exam which allowed me to become a Registered Nurse.

I worked at our local pediatric medical center until we moved to our current city six years ago. B-man remained relatively healthy until about four years ago when he began experiencing repeated respiratory infections. To date, Sissy is once again in remission after suffering an extremely resistant relapse shortly after the birth of her daughter. All of these events have served to both test as well as strengthen my faith. I have learned to take nothing for granted and enjoy each and every moment I am given with my family. Although our daughter remembers one very memorable "Maalox on the ceiling" moment, when our marriage was being tested, I feel that Buddy and I are stronger for all that we have been through together.

This brings us to the present. We are, for the most part, alone in our journey with B-man these days. Our parents are aging and unable to care for him any longer and Sissy now has her own family to manage. There isn't anyone else, just Buddy, B-man and I. We are no longer a couple, we are a trio. Happily, the three of us look forward to the future and the trials and blessings it will bring.

Medical Mom

It is morning and I pad quietly down the hall to peek in on B-man. I have to check on him not only for my own piece of mind but also because I love to watch him sleep. He seems so at peace when sleeping. Having had to get up before dawn since the age of 3 for school, I now let him sleep late. He is on his right side, facing me. This is unusual since his preferred position of sleep is curled sweetly into the fetal position, lying on his left side. Although he is calm at the moment, I realize the coughing will soon begin.

B-man has a chronic lung disorder known as atelectasis, which is basically, the incomplete expansion of a lung. Better known as a collapsed lung which left untreated, pneumonia develops. In B-man's case, he has had pneumonia numerous times, each one further weakening his already compromised system. Atelectasis can be caused by many factors. His is thought to stem from a combination of a partial obstruction due to mucous plugs and compression caused by his abnormal spinal curve and the placement of his gastrostomy button that allows him to receive supplemental calories. Over the years he has learned to lie on his affected side in order to keep from inducing a fit of coughing. Rarely, he will turn in his sleep. When he does, soon the accumulated secretions that have been pooling in the left lower lobe of his lung will, by force of gravity, begin to loosen and move about. This elicits the need to cough and so the attack begins.

One of the ways in which we attempt to keep the mucous buildup from sitting there and causing pneumonia is through a process known as chest physiotherapy or CPT for short. This is done by cupping a hand and literally pounding on the affected side of the chest. It is often painful for the person receiving it and very tiring for the person performing it. It is not extremely effective on chronic conditions due to the frequency and large amounts of time it is needed. I hated like crazy to do this task. My arms would tire after about 20 minutes and B-man became irritable and fussy due to being repeatedly pounded. I was sure I was going to eventually crack one of his ribs. Even doing this on a regular basis, we were unable to notice much response. Thankfully, there is a machine which is simply called, "The Vest" that has been developed and performs this therapy with ease and amazing results. It is unbelievably expensive and primarily used on patients with cystic fibrosis, however, we were offered the opportunity to try it out pending insurance approval. It was prescribed to be used twice a day for 20-40 minute each depending on need. After the first treatment, we were hooked and I vowed that even if insurance denied the exorbitant cost, I would find a way to purchase this incredible machine.

Immediately, B-man was able to cough up what looked like cups full of fluid from his lungs. The sheer volume of it was mind-boggling. Even as a nurse, I was impressed with the efficacy in which The Vest worked. To date we have successfully remained hospital free for 15 months. We occasionally have to give B-man a course of antibiotics when his cough becomes worse or fever develops but thankfully, he has remained at home due to the ability to "ramp up" his treatments. Meaning that I perform them on a longer and more frequent basis until he is well. I realize that this may not always be the case, but I take it one day at a time and am thankful for small triumphs.

On this morning, I soon hear the faint stirrings of B-man and the accompanying cough. I take one last sip of my coffee, look at the clock as I head toward his room and realize that "my" time for the day is over. I am now on B-man's clock. And so begins my day.

Family

It is Saturday and thankfully, I am not working. Well, let me rephrase that, I am not working at my actual paying nursing job today. Everyday with B-man is a workday for me. However, one or two days a month, I work as a high tech RN for a pediatric home health care agency. I have one patient that I care for in her own home. Hmm, that sounds vaguely familiar. Otherwise, I love weekends. I usually get a little break because my sweet hubby, Buddy, is home to help out with B-man's care. At least once a month we load up our over sized E250, handicapped accessible van that I have lovingly dubbed "The Big Green Machine" (which I have discovered is also invisible. We have been hit twice and both times the other driver commented, "I didn't see you")and head north to our hometown for a visit with our family. Six years ago, we left them all behind when we moved 180 miles away due to Buddy's new job. I am very close to my family and miss them dearly. Sadly, due to the aging process, my family now consists of only our daughter, Sissy, her husband, J, their daughter, Moo baby, my mom, Gammy as the kids call her and Buddy's dad, Papaw. I am an only child and Buddy has one older brother with whom he is not close.

Now, packing up for one of these day and a half long visits is no easy task. As I have mentioned before, B-man comes with a variety of medications, equipment, medical supplies and specially prepared meals. It takes me at a minimum, 2 hours of preparing and packing to make sure he has enough supplies to properly care for him. Over the years, I have learned (the hard way) to keep a decent amount of "extras" that are not readily available at the local drug store such as adult diapers, feeding syringes/tubing and nebulizer cups/masks at my mom's house so that I never run short, should our stay get extended for any reason. One of my best purchases for her home was a nearly new bath chair found at a local Goodwill store for $15.00! The exact same one he currently uses at home cost over $300 new. And to think, I nearly walked right past it when Buddy pointed it out to me.

But in the end, all of the preparations are worth it when we reach a certain area just outside of their city that B-man recognizes, realizes where he is headed and begins to get excited. He rocks his wheelchair back and forth like crazy and the grin that spreads across his face is as big as the state itself. He knows he is going to see family.

Few people can comprehend what it takes to manage a disabled child's daily life. Family included, as evidenced by the statement made by our son in law, J, as he watched us unload The Big Green Machine one day. After about our third trip of hauling luggage and equipment into the house, he asks, " Why did you bring so much stuff? Aren't you only staying for 2 days?" He just didn't get it. To make matters worse, we cannot bring the one piece of equipment that makes our lives easier...our lift system. Even at 23, B-man is still relatively small. However, lifting him does take some effort and unfortunately, we are not getting any younger. That much wear, tear and strain on our back muscles eventually takes it's toll. The lift system, which is permanently installed in our ceiling at home is, hands down, our favorite piece of equipment ever. Bathing B-man anywhere other than home is a two person job due to the logistics of lowering him down into a bathtub. The lift allows us to safely transfer B-man from his bed to his bathroom and down into his bath chair without the fear of slipping, falling, dropping or otherwise harming him or ourselves. Without it, we take our chances.

However, once the van is unloaded. The fun begins. Now to say that my mom's home is crowded would be an understatement. She has a love of furniture and nearly every square inch of wall space is covered with some sort of antique wardrobe, buffet, pie chest or other equally over sized appointment. Then on top of each of these pieces are doilies, plastic flowers in vases and a multitude of knick knacks, bottles or jars. This makes maneuvering a wheelchair around quite challenge and finding even a square inch of space to place something becomes a frustrating task. I think Buddy and I share an equal amount of stubbed toes from trips to the bathroom in the middle of the night. But all these inconveniences aside, we do enjoy our time with family.

Even under the best circumstances, living with B-man is work. It is something that I gladly do because I love him and cannot imagine living without him. However, on Saturdays, I happily enjoy my breaks.

My Very First Blog

Welcome to my first blog post. I am entering a new phase in my life and decided to begin by sharing it on the world wide web. This is a scary prospect for me! However, I am taking the plunge. Please allow me to give you a little background information so you may have a better understanding of my future posts.

One year ago, I quit my nursing job at a local pediatric hospital and became a stay at home mom...again. This time my "baby" is a 20 something year old young man who aged out of his special needs program in the public school system. B-man, as I will call him, is now my constant companion. He is also non-verbal. Talk about your one sided conversations! What I found out was that there are not a lot of programs out there for special needs adults with his level of ability. B-man, who is in a wheelchair, has cerebral palsy, severe developmental delay and numerous health issues including a congenital heart defect. As he has aged, his health has declined and he now requires 16 different medications twice daily along with a nebulizer and CPT Vest machine which help keep his lungs free of mucous buildup and assists in preventing pneumonia. He is a sweet young man that can light up a room with his smile. B-man participates in Special Olympics bowling and has gold, silver and bronze medals for his efforts. He also rides horses as part of a therapeutic hippo therapy program. He has an older sister "Sissy" who is married and now has a young child of her own.

As an only child, I have always been a bit of a loner but I had no idea how isolating being a stay at home mom could be. When the children were younger, I lived near family and saw them quite often. Now, doing it for the second time around, my nearest family member is 3 hours away. Never being one to have lots of friends, I now wished that I had put myself out there and made more friends when I had the chance. I have one friend here who is my next door neighbor and a few casual acquaintances. The close friends I do have are in my hometown, but again that is 3 hours away! My husband is my best friend, however, he is not a girl and women need their girlfriends.



As challenging as all of this may sound, it is also most rewarding. I get a glimpse into a whole other world of people and how they interact. I see abundant happiness, joy and selflessness taken to a new level. People with special needs are just that, very special people indeed.

Please join me in my journey and learn along with me. My posts will vary by content and length and many may be off topic. I look forward to finding out where this takes me.