This post comes from Mary Jane Goodman-Giddens, a Lupus Foundation of America supporter and activist. She is a mother of six, two of whom are living with lupus. This has been reposted with permission from Mary Jane's blog about her son Ben's journey with lupus, Laugh By Laugh, Hour By Hour. To read more, please visit her website at bensstory.org.
January 29, 2013
Ben drove to school today. After the closing bell, he had to run to the hospital to have labs drawn, get chest x-rays and an EKG. I was taking care of my daughter’s almost four month old and the family agreed the baby and I shouldn’t float around various corners of the hospital with such a little one.
The reason for today’s visit was the first of many in preparation for a kidney transplant due to his fight against lupus nephritis. We were told Thursday a week ago he is being moved to the active waiting list, after being on the inactive list for a year. As well, Ben had moved from the children’s list to the adult list as he had turned 18 in December. With today’s lab results, the numbers regrettably looked more negative. They have remained fairly steady and this was an unwelcome surprise. With the move to the active list, it shouldn’t have been seen as one; it shouldn’t have been unexpected.
In some strangely faithful, yet apprehensive way, we have been awaiting this change in various measurements in his blood. The creatinine lab measures, basically, kidney function. A good (read normal) number is 1.1 or 1.2 and below, depending on the laboratory used. Our son has lingered in the 2.0 – 4.0 area for a few years. I speak specifically of this number as it reflects the condition of the organs directly affected in our son. When he first became ill the numbers were higher; he at times was fighting for air. For a multitude of reasons related to the severe kidney damage and dangerous meds taken to avert more damage, he went through periods when he was consciously working, struggling, to breathe. A number of factors led to these episodes. His lupus attacked his kidneys very violently. As a result, his blood was not cleaned by the damaged organs and certain electrolytes built up in his system causing the notorious edema (fluid buildup) and dangerous cardiovascular problems including long-lingering high blood pressure. Frightening seizures and a slew of other issues ensued. Due to his several rounds of chemotherapy, which saved him by knocking the lupus attack off its feet, his immune system was in very poor shape. Infections periodically took over his body. Shockingly at one period throughout his ordeal, his white blood cell count dropped to an horrendous low, near zero. His absolute neutrophil count was near zero. Our Ben was terribly close to dying. As he laid in his PICU bed, in an induced coma of sorts, I had to say goodbye to him. I don’t think I actually comprehended what everything and everyone was saying to me. I didn’t want to comprehend. I tried to trick myself and deny the truth, though deeply inside I knew what was close and very possible.
I had kept up with the daily labs, the every several hour blood pressure reads, the input/output of urine, the amount of fluids he consumed and I tried to learn as much as I could about this disease and other autoimmune diseases. I recorded everything, most likely to an extreme. Gene, my husband, held me as I cried at his cumbersome bed, as did my tearful daughters. They were on either side of me as we walked through the PICU; all nurses and staff there at the time turned and watched us leave through the strictly watched doors. In some regards it did feel as a funeral procession with guards turning towards the grieving family as they move through a cemetery lawn.
I do not know how Gene stayed strong. I was not privy to all he knew as a doctor. The words “he might die” were not spoken aloud. Gene was protecting me, though somewhere I knew and feared the worst was to come. He drove two hours back up the road to take me to be with our other children. This drive was the most surreal I have ever taken. Then he had to drive back alone, with his thoughts and fears.
What had taken place and brought him up to the PICU once again I have trouble revisiting. My husband and I have spoken of it often, but I cannot delve too deeply, nor for too many minutes.
Benjamin had been in the Pediatric ICU. His overall health, relative to others in the PICU, was seemingly much better. This is how lupus and other autoimmunes can look to an outsider. He had been in trouble with extremely elevated BP and infections. The pediatricians covering the ICU that week believed him safe enough to go down to a regular children’s ward, 7B. Ben was extremely alert, though it was clear he was having difficulty breathing. He was retracting just as I had seen one of his brothers do when this brother was rushed to Kapiolani Hospital in Honolulu. In both situations it was surreal and horrid to watch. It was a difficult scene in which to be a part.
Ten years prior to Ben’s steep fall from health our 2 month old, his brother Isaac became ill. At birth, Isaac was premature and not breathing. My OB left my side at delivery as they were using a “bag” to force air into his tiny lungs. Once we took him home from the hospital, though small, he was healthy. Two months later he began struggling again to take in air and I called 911. He was retracting. It is a bit like looking at a child sucking in his stomach to see how far he can. I remember seeing little Isaac on our kitchen counter on Aukai Avenue with several first responders, firemen with all gear on, leaning over him. After an ambulance ride with his oxygen saturation level hardly above the eighties, Isaac had a brief stay in the hospital. Once the sat level returned to normal, he was released.
As all mothers, I desired to believe this was as horrific as life would get raising a child.
Ben was very conscious during his struggle. Very alert he was at this time. As a mom, I had thought he shouldn’t leave the PICU. I didn’t want him to leave the PICU. After his bed was wheeled down two stories, our son was placed in a room on the ward in which we sadly felt more than at home. Very quickly he went downhill. His struggle became more and more obvious. On this particular ward I had fallen for the nurses as caretakers. We knew many and we felt at home with them, as much as one might possibly feel at home in a childrens’ hospital ward. Ben had been there that long. What took place on this evening was something several nurses seemed not to have witnessed before this.
To describe this is difficult. This is the time period I stop short of visiting fully. I take incomplete glances and when I do I see little. I do see his eyes. I do see a sea of uniforms. I do see the male nurse standing at the back of the bed holding and adjusting Ben’s mask. That is all I can handle.
Ben’s breathing became much more labored. He showed fear. On this particular ward, his struggle was not common. Gene and I looked at each other in an unspoken language that said more than any spoken language could. He was frightened. Gene, a neurosurgeon and a worried father, had to call for help, stat. I will never forget his stance and his loud call down the ward to the nurses station. Thank God we have him. I don’t think he will ever grasp the pride and gratitude I hold for him. As nurses ran, pulmonary moved in to give him oxygen, Ben’s eyes showed so much fear. They were large and rounded as he struggled and looked deeply into mine. He said at least once, “Mom, I am scared.” It was very difficult not to show my fear when crouching beside him as he spoke those words. I am sure I failed.
When not at his side, I was pacing. Gene too. Though so many were over him, around him, working and trying to figure out next steps, and some staff simply watching the emergency unfold, I have never, ever felt so utterly alone, so completely helpless. I never have felt so paralyzed, yet frantic. Never have I cursed God, any and all gods, and begged God all in the same moment before then. I could do nothing to help him breathe. I could not lift the car off of his body.
It has taken me four days to write of that specific time during this cathartic exercise. I have waited about five years to write this piece at all. I have skipped around in this story, jumping ahead in time and back again to avoid addressing those awful few days. Difficult to write, difficult to live through, but I still have him. Some people do not understand that autoimmune diseases, such as lupus, can be deadly and often are. It seems that they can be seen by some not familiar as an inconvenience with minor aches and pains. This is actually quite far from the truth, though all those affected may have different systems damaged or stressed.
Eventually, after quite a few rounds of chemotherapy and high dose prednisone, the meds did halt the lupus’ attack. He eventually was deemed in remission, but the kidneys, we had been told, would work only slightly for five to seven more years. They have. They have with 15 or so meds daily filling in for what his kidneys cannot do alone, with countless adjustments. We have had some additional scares beyond the grand mal seizures of Pres Syndrome (Posterior Reversible Encephalopathy Syndrome) and high potassium levels. His seizures kept him in the hospital. His high blood pressure frequently kept him in the hospital in Charleston. Med management kept him in the hospital. The need for dialysis kept him in the hospital. An outrageously high creatinine level had him airlifted urgently to Charleston and we once again feared the worst. Through all of this and the biopsies and placement of ports, the heavy meds and immense swelling of his entire body, Ben remained a hopeful kid. He remained positive and couldn’t wait to go home. When we did, it never was for an extended period. In a matter of days we would return to the Medical University of South Carolina, a stellar hospital from which we lived only about 2 miles away when Gene was a med student and resident. Of course, Benjamin had days of frustration and moments of anger. Even still, optimism was the word of the day, the month and it all stemmed from him, though he knew he was seriously ill.
Carefully, and with much forethought, we slowly gave him more knowledge about his illness as did his doctor, his rheumatologist, Natasha Ruth. (She is a very special person to all of us. She and his nephrologist, Dr. Orak, kept him with us.) Ben was only 12 when diagnosed. We let him know lupus is a chronic illness that cannot be cured. He would live with lupus. LIVE being the operative word. Some children with him in the PICU, some children with him on the chemotherapy ward would not have the option of living many more years, or even months. I will always be in a strange awe of the parents that have watched their child suffer with sickness and have lost their cherished one. I do not know how they continue day-to-day. Through this experience, I indeed was gaining a small bit of insight into their lives, though I never was forced to go over the cliff. I never had to fall so far. Nevertheless, I was gaining insight into something no one wants to see or of which to learn.
The lupus numbers still have him in remission. The kidneys, however, are seeing their last days. Ben has indeed begun the climb up to the next branch on the tree. He may be scratched by the bark and small limbs, but he will be stronger and higher once he has finished the climb. Children weighed down by illness of any sort are often quite resilient and hopeful. At some moments they are seemingly weightless, not held down by sickness. My children have taught me so much about living, resilience, unwavering strength and rising above. They are my heroes. Gene and the doctors are my heroes. Ben is my hero.
If you, as a reader, feel any desire to help children with lupus, please share this piece to raise awareness of this insidious disease. Many will be grateful. My family and I will be grateful.