Now What Do I Do?

It has been a good run for B-man. He has been well since last July. Thursday, he began with a tummy bug and stopped eating. Now he has a cough and fever. I am pretty sure he aspirated at some point and possibly has pneumonia...again. I have lost count of how many times he has had it. It was a frequent thing until we began what we lovingly call the stinky treatment. It is a medication that is used in his nebulizer that smells like rotten eggs. Sounds yummy huh? It liquefies the mucous in his lungs so he can cough it out more easily. I will call his doctor in the morning and she will most likely call in a script for antibiotics. We have a rapport, she and I. I am very grateful for her confidence in the fact that I know my son and how his illnesses present. Before we found her, we spent countless hours sitting in the doctor's office only to have him say, I don't know what is wrong, let's just call it viral. We nearly lost him during one of those "viral" infections that turned out to be a raging case of pneumonia.

I was in my hometown last week, supposedly to care for our daughter, sissy, who was having surgery. However, once again, B-man and his sudden illness took precedence over her. Sadly, this has been a recurring theme in her life. Sometimes I think God allowed her to develop her blood disorder so we would be forced to turn our attention away from B-man and focus on her. I don't know that for sure, but it makes sense.

I am tired tonight and have a long day ahead of me tomorrow so I am going to sign off for now. Hopefully I will get back to writing soon.

What Is Normal?

Today has been a difficult day. It as been one month since my friend passed away. I miss her so much it physically hurts. If B-man didn't need so many medications, treatments and care, I might not even get out of bed each morning. Never in my life have I felt such sadness.

While I am on the subject of B-man, let me just say that I am very glad he has had such a good run of health. We saw his pulmonologist last week and he was quite pleased with B-man's progress. That is not to say that we don't still face daily challenges. Lately eating has become a battle. One day, the only thing he chose to eat all day long was two bites of cream of wheat. No amount of pleading, bribing or singing was going to convince him to eat. He does have the G-button for supplemental nutrition however, I chose to not use it that day, just to see if I could get him hungry enough to eat. The next day was a bit better and by the third day, he was eating at least half of his meals. I decided that his supplemental nutritional formula was causing him to lose his appetite. Now, I only give him a little at night just to boost his caloric intake. By morning, he is, once again, ready to eat.

Seems like it is always something. Life with B-man is an ever present reminder that normal is only a relative term.
I remember one time a friend of mine had a new baby. He was only six months younger than B-man. When I would see her at church, I would always ask about him. By the time he was six months old, it became apparent that she was avoiding me. One Sunday, I was dropping off B-man in the nursery and I ran into her. Having not seen her in a few weeks, I automatically asked how her son was doing. When she only replied, "fine" I began to question about his milestones. She asked, "Do you really wnat to know?" "Of course I do, Why would you ask me that?" I replied. She then began to tell me that because he was doing everything either on target or early, she was afraid to tell me. She thought it might upset me because B-man was older and still had yet to meet any of those same milestones. I reassured her that I did indeed want to know about his progress. I was happy for her that her son was on target and progressing normally. I also explained to her that I accepted B-man for who he is and what he can do and the fact that her son was progressing at a normal rate in no way upset me. It's funny, how people's minds work. Here I thought she was mad at me or something and all along she was just trying to spare my feelings. I only wish that all problems were that easy to fix. Recently, tht same friend's son graduated from Texas A&M. I am happy for them.

I have some pressing issues at hand so I will cut this post short.
Later,
~Ginger

A New Year

Since it has been nearly 3 months since my last post, I had better backtrack a bit. My friend began to steadily get worse. December 18 was our annual Christmas get together with her and her family. In the past, we would laugh, eat, drink and exchange gifts. Price was not important. We just enjoyed hanging out together. This night, we ate but there was not much laughing. My friend came over in a wheelchair and in pain. Since it had been nearly a week since I had seen her, I was taken aback by her gaunt appearance. As a woman who loved to cook and eat, she had plump cheeks that glowed when she smiled. On this night, she did not look like the same beautiful woman I knew so well. I fought back the tears and entertained as best I could. My gift to her had come a week earlier. I paid our hairdresser to come to her home and give her a cut and color. She loved it. She told me that it was the most thoughtful gift she had ever gotten. I loved this woman and it hurt so badly to see her deteriorate so rapidly. The evening was over far earlier than it had been in the past. She was not able to tolerate being up for too long so they all went home. I doubt that they had even made it to the end of our driveway before the tears began. I buried my face in my husband's chest, he wrapped his big strong arms around me and I cried my heart out.

We spent the next two nights with her girls, looking at Christmas lights and taking them to Dave & Buster's. They enjoyed getting out of the house and doing something normal. A few days later, we drove three hours north to visit our family for Christmas but I really wanted to be spending this last Christmas with her. I spoke with her on Christmas day and she was having trouble remembering what presents she received. Two days after we arrived back home, Hospice told her family that she had only about a week to live. At the time, she was still able to use a wheelchair and walker to go to her recliner and to the bathroom. Within a couple of days, even that freedom was gone. She was basically confined to a hospital bed. I went to see her everyday even if only for a few minutes as she was beginning to sleep most of the time now. I told her all of the things I needed to tell her. She was able to utter only a few words but I will never forget them.

New Year's Eve arrived and her husband wanted to make a toast to her at midnight. We went over and had champagne. At midnight we all went into her room and gathered around her hospital bed. She awakened for a few minutes and knew we were all there. The toast was beautiful...just like my friend. The next two days were extremely rough for her and her family. She was actively dying now and it was difficult to watch. I sat by her bed for several hours on that last day. She knew I was there at first but as she slipped further and further away, she grew agitated. I believe she knew she was leaving soon and in the attempt to cross from this life into the next became anxious. I left her at about 11:45pm only to be called at 2:30am and told that she had passed. It was January 3, 2010.

Today, I am still grieving her loss. She was all the things you hope to find in a friend and I am convinced that I will never again have a friend like her. She will live on forever in my heart.

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.