Today’s post is about trauma.
Everyone experiences trauma, whether it be on a small or grand level. The interesting thing about trauma is that it affects everyone differently. Something that one might not feel is traumatic might cause post-traumatic stress disorder (PTSD) for another.
Let’s take driving as an example. One person might narrowly avoid being hit by another car, shrug, and never think of it again. A different person would be so shaken up that they might start having nightmares. Visions of being hit, visions of people getting hurt, fear of injury or death. Without appropriate intervention, that person might decide that they can no longer drive – that the risk is just too great, the fear too debilitating.
PTSD is a fascinating and terrifying disorder, speaking from my own experience with it. I have PTSD from my birth experience, and I have it from a situation with my son.
I still remember the image clearly that day. Jason was at daycare, and he had just turned one year old about a month ago. One of the daycare workers sent me a picture of his wrist and arm, where tiny red dots were clustered all over. I called the doctor to make an appt, and we headed over shortly. I assumed it was just a rash or some virus. Daycares are notorious for being walk-in petri dishes, after all.
The doctor wanted to draw blood and insisted that we stick around for the results. I was confused but I agreed. When the results came back, they were as the doctor expected. Jason was experiencing a blood disorder. His platelets were dangerously low at 4,000. A normal range is 150,000 to 450,000 platelets per microliter of blood. Platelets assist in clotting. Low platelets can result in severe bleeding. That is what was happening to Jason’s skin. Jason had just learned to walk, and we held his wrist to assist him. Even the grip of our hands on his wrist was causing bleeding beneath the surface, manifesting as tiny red dots. That rash is referred to as petechiae.
The doctor called the hospital and got Jason a room. I was terrified the entire drive to the hospital, which was about five minutes from his doctor. I was so worried that we would get into an accident and that Jason would die from bleeding injuries. I know that sounds extreme, but it is where my mind was going at that moment. I alerted my husband, who started driving to the hospital immediately.
The front desk knew exactly who we were. I burst into tears. They brought us to our room and put Jason in a hospital crib. They drew more blood. They covered him with a handmade blanket that we were to take home once the ordeal was over. They warned me that we would at least be staying overnight.
They determined that Jason had idiopathic thrombocytopenic purpura, or ITP. ITP is when your immune system is triggered in such a way that it starts filtering out your platelets in addition to other bacteria or viruses. Idiopathic, meaning the behavior does not have an explanation; it is simply happening and hopefully temporary.
Jason was put on intravenous immunoglobulin, also known as IVIG. A very rare, expensive treatment for those with antibody disorders, inflammatory muscle diseases, immunodeficiency disorders, and extremely low platelet counts. He was also given intravenous Benadryl just in case he had an allergic reaction to the IVIG. Although Jason having an allergic reaction was terrifying for me, he slept peacefully through the night while the Benadryl sedated him.
We ended up staying for two days. We were able to get his platelet level to 11,000. That was the cut off for where he would be allowed to go home, but we would need to be extremely cautious about him getting injured.
We had bloodwork again the next day, and his platelets had plummeted once again. We stayed overnight again to have an IVIG infusion. We also received another handmade blanket…what a wonderful thing for people to do for children. This time Jason turned over during the night and pulled out the IV just enough where his arm filled with fluid, and they had to reset the IV. Seeing him even a little uncomfortable was unbearable for me…but I would stay, and I would be there for him the entire time. Once the IV was set again, we decided to have Jason just sleep in my arms in my hospital bed. I slept peacefully and deeply for the first time that week.
His platelets plummeted AGAIN. The IVIG infusion was not working, and it is such a specialized and expensive treatment that it was decided he should be put on dexamethasone, and very strong steroid. We were then referred to the head of hematology at Dartmouth Hitchcock, Dr. Kim. This woman was a saint. She scheduled a bone marrow biopsy and aspiration to rule out leukemia. She reassured me that patients with leukemia present as very sick, whereas Jason did not appear to be sick at all.
I remember crying literally the entire time when we brought him two hours away to the hospital for the procedure. I had quite a bit of surgery when I was a child due to a head tumor, and it was rather traumatizing. I wanted to be strong for Jason. I didn’t want him to see me upset or sad. I was there with him while they put him under, and my husband held me as I shook and wept, watching his eyes roll back from the anesthesia. The procedure was quick. I cried the entire time. He came out of the anesthesia happily, and we soon found out that he did not have leukemia.
We were to stay overnight for at least one more night. They were giving him the steroid intravenously. Dr. Kim ran a battery of tests and requested all his previous test results. She then updated his diagnosis from idiopathic to immune thrombocytopenia purpura. Jason had been sick when he had his varicella vaccine. No one knew. He had developed a nasty rash at the injection site which I had taken pictures of previously. He had something called cytomegalovirus (CMV). This had triggered an overreaction of his immune system. It was just a matter of time (hopefully) that his body would stop attacking itself and return to normal.
Dr. Kim also felt that being in the hospital was unnecessary. Home was soft and safe, with constant supervision by me and my husband. The hospital was cold and hard. She prescribed mercaptopurine, a chemotherapy drug that we could not touch with bare skin or breathe in (Jason was to ingest it). She also prescribed an incredibly specialized medication, Eltrombopag.
The Eltrombopag was a problem, as well as my first introduction to how broken our healthcare system is in the United States. It was $10,000 a month. Our insurance deductible was $7,000, and we thankfully had the means to pay for it, but all I could think was how less fortunate families would deal with such an extraordinary price. Saving your child or paying rent. Curing your child or feeding you family. It was absurd and inhumane to me. I ended up with about $5,000 worth left over after his treatment and could not donate it. It was messed up.
We were to have bloodwork done every three days to measure improvements. Jason was a rockstar. He never cried, and the lab technicians grew to know and love him. What type of child didn’t cry when having blood drawn? What child was happy to be there? My gosh, he was amazing. He IS amazing.
Jason started to improve. I remember the first time his platelets topped 40,000 which was still very low, but high for him! I was ecstatic. I could see the light at the end of the tunnel; my baby would make it. And he did.
Jason is four years old now. We test his platelets prior to and after getting vaccinated. We watch for the petechiae rash. He has not plummeted since, and is strong, happy, and healthy.
I, on the other hand, am always afraid of him getting hurt. He cannot remember any of the procedures or time at the hospital. Trauma truly is a strange thing. I have complex PTSD flashbacks; I have intense anxiety. I was always judgmental towards helicopter parenting methods, and now it causes me physical discomfort to let go and let him be a healthy robust little boy. He is so incredible. He is the sweetest boy, not a mean bone in his body. He is reading at a third-grade level at age four. He can jump and run like a maniac.
I must have done something right during those intense seven months.
If you or someone you know is experiencing or has experienced some form of trauma, please seek out help. The trauma will probably never leave you, but you can obtain or develop the tools necessary to cope. I dove straight into cognitive therapy and medication. It was and is worth it. YOU are worth it. I believe in you.
