This is the third installment of the journey of my son’s health crisis through my eyes. While the journey is not quite over; each day the road becomes easier to walk on. Here are the first two installments if you have not read them yet–My Journey to Clarity, a Genuine Thanksgiving–The Beginning and My Journey to Clarity, a Genuine Thanksgiving—Brain Surgery. This piece showcases the beginning of my son’s recovery from brain surgery.
Wednesday, October 31st, also known as Halloween, seems an appropriate day to remove a brain tumor. It has been over 11 hours since I kissed my son and saw him being wheeled away for surgery. Finally his surgery is over and I am allowed to see him in the recovery room. As I go through the maze to get to his bed I am so nervous. I just need my son to recognize me, move his arms and legs, and talk to me before I can relax.
I see him. He had a white turban-like cap over his head extending just below his ears. His eyes were closed. I say his name and he opens up his eyes and says “Hi Mom, how did the surgery go?” Tears well up in my eyes, he knows me and can talk normally. The nurse checks his neurological status and I can see that my son can move all his extremities and they are strong. The only problem he had was with his vision but he did not have his glasses on and without his glasses he cannot see a foot in front of him.
He asks me again how the surgery went. My thoughts are going a million miles an hour; how much do I tell him? I have never lied to him before but I decided just to tell him the bare minimum. I told him that the surgeon believes he was able to get the whole tumor out but needs an MRI just to make sure. My son now wants to know if it was a choroid plexus cyst or if it was cancer. What do I say? I did not want to worry him but I also did not want to lie and jeopardize the trust we have always shared. I told him we will not know for sure until the final pathology comes back in a few days but it does not appear to be a choroid plexus cyst but a tumor that could turn into cancer if not removed. Since the surgeon believes he was able to get the entire tumor out, he is considered cured. My son then said in a good-humored voice– tumor out, check; move my arms (as he is moving them), check; I can recognize your voice, check; I can see, check. I began to laugh because my son’s personality and quick wit were still there. I felt a huge brick off my chest. I am so thankful for those few minutes witnessing my son acting himself; because, if I had not experienced this, I would never have been able to cope with the next 7 days.
My son was taken to the Intensive Care Unit (ICU) after having a CT and a MRI of his brain. The doctors told us that he would stay in the ICU until the drain from his head was removed in 4 to 5 days; after that, he would be transferred to a regular room prior to discharge. It was after midnight by the time we could see him. His girlfriend, brother, and father said their goodbyes for the night and I hunkered down in the chair next to his bed where I could watch him. Although I wanted to stay with him because of my medical knowledge; the truth is that I needed to stay with him. If anything changed in his health status I would catch it immediately since I knew him better than the nurses. Please do not misunderstand me, the nurses were wonderful but I know his personality, how he speaks and moves, who he is. If something happened and I was not there, I would never forgive myself.
The doctors continued to have him on steroids to decrease the swelling in his brain, and started him on a medication to decrease the chance of having post-operative seizures. He never had seizures before the surgery so the neurosurgeon was fairly confident that my son would be seizure free after surgery. His night was okay, he slept through most of the hourly awakenings and blood draws. At 7:00 am I had to leave since the ICU does not allow visitors from 7:00 to 8:00 in the mornings and evenings. I wanted to say, “I am not a visitor, I am his mother” but I held that back; besides, it gave me a chance to get some coffee and make calls to my family and friends in Chicago.
His first recovery day was difficult. The doctors had to change his pain medication because it was not working at all. He was having trouble seeing without his glasses, so I taped his eyeglass stems to his cap since his ears were not accessible. Picture the alien cartoon character The Great Gazoo; except with glasses taped to the helmet. Looking back now, I can laugh, but at the time, all I saw was my son in pain who just wanted to see. The doctors came in to do their neurological assessments on him. Everything seemed fine except for his upper left peripheral vision in both eyes—he could not see that area. I hope this was from swelling; however, if this was the only deficit he had considering the complexity of his surgery, grateful is the only word I can come up with.
During his first day of recovery, and over the next few days, his personality changed. He became very quiet with a look of hopelessness on his face. He did not want to talk and when he did, he was angry. This anger, however, was primarily directed at me. If I had suggestions on how to make him more comfortable, if I ordered more than one thing for his meals, if I just breathed, he was angry at me and no one else. I would frequently remind myself that I was his punching bag because he knew I would always love him and be there for him no matter what he did. I understood this intellectually, but emotionally it was very difficult. I felt completely helpless because he looked so sad and there was nothing I could do to make him feel better.
Sunday, day 4 of his recovery, I asked him if he needed anything and he said “Yes, a bat so that I can hit you.” While I knew he really did not mean it, it still was difficult to hear these words coming from his mouth. I had an idea; my son has a really great sense of humor. I thought if I could just pull that out of him, I could get him to laugh. I thought it would be funny if I could find a blow up bat since that would hurt less. My husband and I left the hospital in search for one to no avail; but, we did find blow up boxing gloves. When we got back to the ICU, I blew one up and handed it to him. I told him we could not find a bat but this would work out just as well. I also told him that no matter how hard he hits me, I am not going anywhere and that I love him. He did chuckle just a bit.
Beginning late that night, my son’s intracranial pressure alarm was going off every 15 minutes for 30 seconds to a minute. While the alarm has gone off before, never has it gone off these many times. This alarm warns the nurses when his intracranial pressure is above normal. The doctor had started clamping the drain earlier in the day and was only concerned if his pressure stayed above normal for 2 minutes. If after 2 minutes the pressure was still above normal, the nurse would come in and open up the clamp to drain the fluid. The clamp only needed to be open twice throughout the night with very little draining; yet the alarm rang frequently. I wondered, as well as his ICU nurse and doctor, why his alarm kept ringing if there was so little to drain.
Usually, at 4 in the morning, my son is taken to radiology to have his daily CT scan, The scan checks for bleeding and confirms that his spinal fluid is draining properly from his right lateral ventricle. The doctor decided to do the CT scan a little earlier to see if my son’s spinal fluid was being blocked or if the machine was reading false numbers. If his spinal fluid was not blocked and his ventricle looked fine, then the doctor would be able to take out the drain from his head later that day. How I prayed it looked fine because my son would be transferred to a regular room which will hopefully raise his spirits.
My son returns from his CT scan and gets hooked up to the machine that measures his intracranial pressure . He would wake up a few times and stare into space and I would ask if he was okay. Sometimes he would answer, other times he would ignore me or mock me. The alarm keeps ringing every 10 to 15 minutes; I am totally exhausted. An hour or so later, I notice that my son is staring in space. I call his name and he mumbles something. I ask if he is okay and now he ignores me. I begin to wonder if this could be a partial seizure or just his anger with me. He moves around now and I decide it was the latter. As I sit in the chair, looking at him, listening to the alarm going off every 10 minutes or so, I am trying to figure out what I can say to him that I have not already said to help him get through this rage he has toward me.
Suddenly, I see his eyes roll back, I motion the nurse to come in, and as she enters my son’s room my son loses consciousness and his muscles begin to jerk back and forth—he was having a tonic-clonic seizure (grand mal). Now several nurses and doctors run into his room, they push the drug Ativan into his IV line to stop the seizure but he continues to seize. I leave the room and watch the doctors and nurses work on him through the window. I call my husband and tell him to get to the hospital quickly. My husband was supposed to fly back to Chicago in a few hours; I was so happy he still was in town. I see a doctor push another drug into my son’s IV but the seizure will not stop. Another doctor comes out to talk to me in the hall. He says that they have given my son Dilantin and more Ativan but he is still seizing. They need to intubate him and put him in a coma to calm his brain down. They also have to put him on a continuous EEG machine to monitor his brain activity. He then informs me that I cannot stay in the ICU right now that I should go to the waiting room until a nurse informs me that my son is stable. As I turn around, a man with a ventilator runs into the room. I walk out of the ICU dazed, confused, and in a panic. Why did he start having seizures 5 days after surgery? Will he be okay? Questions upon questions were spinning in my head. Finally a nurse comes out to tell me what was going on. She tells me that my son’s seizure stopped before the doctors had to intubate him. Right now a technician is putting the continuous EEG on him and I could go in shortly to see him. As the nurse leaves, my husband exits the elevator and we embrace as I sob. I fill him in on all that happened. We sit and anxiously wait to see our son.
We finally get the okay to see him. We enter his room and he has all these wires coming from his head connected to an EEG machine. He is pretty tired from all the medications the doctors gave him. He asks me what happened and I tell him. He begins to stare into space again and I look at his EEG…I can see that he is having another seizure but this time it is a partial seizure (focal seizure). I get the doctors. My son was now getting these partial seizures every 10 minutes lasting for 1 to 2 minutes. The doctors were afraid that he could get brain damage from all these seizures because each seizure increases his intracranial pressure and causes more swelling in his brain. The doctors put him on a Versed drip which is an IV anesthesia. Again, the doctors warned us that he may need to be intubated. My son ended up having 31 partial seizures and 1 tonic-clonic seizure in only 4 hours. Finally, after increasing the dose of Versed, the number of seizures decreased significantly. They also started him on another antiseizure medication. He ended up being on the Versed drip for close to 4 days including 3 other seizure medications. Thankfully, his last seizure was Wednesday.
Interestingly, after my son’s first seizure he no longer was angry at me. I thought maybe because he was scared. I ran into a nurse that took care of him prior to his surgery and told her what had happened. She told me that partial seizures can present as a change in personality. I wish I knew this earlier. I kept telling the nurses and doctors in the ICU prior to his seizure that this is not how my son behaves. I know he has been through a great deal but this is not my son. The nurses reassured me that he has been through a lot and it just takes time. I believe he was having these partial seizures prior to his tonic-clonic seizure.
On Thursday my son’s CT looked good, he did not have any seizures for 24 hours, and the doctors weaned him off the Versed. Hallelujah, the doctors can take out his drain! My son had the biggest smile as they transferred him to his new room later that day. To see him smile, joke around, and be himself was indescribable. While the road ahead will be challenging, I know my son is finally back.
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