My son has been in surgery for 10 hours. Waiting a few hours is difficult, waiting 6 hours is agony, but 10 hours is completely horrendous. Finally a nurse from the operating room called and told us he should be out of surgery in 15 minutes. I had a huge sigh of relief; we will finally be able to see him. I keep looking at the clock…15 minutes pass, now 30 and I begin to panic. I understand surgeries can take longer than they anticipate; however, I am very anxious because of what happened earlier in the day.
Approximately 5 hours after the start of his surgery, the surgical nurse called and told us the surgery will be another four hours and that he was doing fine. The waiting became much easier knowing he was doing well and the surgery was almost over. One hour later we get a call that the doctor is ready to meet with us. How could this be? He said four hours and it is only one hour. My husband tried to reassure me that he just finished early but I knew better.
My husband, son’s girlfriend and I go to the surgical waiting room and wait for the surgeon to come in. We see the surgeon enter the room. We stand up and walk over to him as he turns to the receptionist and asks her if there is a conference room he can use to talk to us. My heart begins to race and I am shrouded by fear. Did something happen? Did they get the biopsy back? The walk to the conference room seemed surreal .
The neurosurgeon told us that our son was still in surgery and that the surgery was more complicated than he had anticipated. The tumor was larger than appeared on the MRI. It filled his entire right lateral ventricle causing massive swelling. In order to get the whole tumor out and decrease the pressure in my son’s brain, the surgeon had to remove a large area of the right side of his skull which was reattached with plates. The type of tumor was also a surprise. Since 2009, all the neurosurgeons and radiologists were confident this would be a choroid plexus cyst; however, this was not a choroid plexus cyst. The surgeon continued to tell us that he will not have the official pathology results for a week but typically the final results are either the same or more serious than the small specimens sent during surgery. He then adds that he has never seen results that were less serious than the original specimen. Finally he tell us the results of the preliminary biopsy. My son had a glial tumor with characteristics of a subependymoma. A subependymoma is a grade I tumor that tends to grow slowly and is not very aggressive. The neurosurgeon told us that my son will need to follow-up with a neuro oncologist (doctor specializing in nervous system cancers) to see if he needs any further treatment. The good news is that he believes he completely resected the tumor; but, will not know until my son has a MRI after surgery. If the tumor is gone, my son will be considered cured although he still will require close follow up for the rest of his life.
I felt like a deer in headlights. Everything the doctor just said I was trying to digest. The doctor asked if we had any questions—of course I do I just do not know what they are yet–you have completely shocked my world as I know it, I said silently. Besides, I want him to get back to my son and finish the surgery. I did muster enough courage to ask one question. How will my son be neurologically when he wakes up? The surgeon proceeded to tell us that when he opened my son’s skull there was so much swelling and pressure that he had to release it before he mapped the brain. Mapping the brain is when electrical stimulation is used on different parts of the brain to determine what area controls what function. Typically the areas they map are motor function, sensory, vision, and language. Whatever air I had left in my lungs came out and I wanted to curl up in a ball. I knew what that meant. The surgeon went into my son’s brain blindly to relieve the pressure because if he did not, my son could have had extensive brain damage from the swelling or possibly even die.
Thankfully, after my son was stable, the surgeon was able to map my son’s brain. The surgeon told us that he was confident that he did not go into any questionable areas in his brain to cause damage but no one will know until my son wakes up. The surgeon stood up, told us he will answer any other questions we can think of the next time we see him, and that he will go back and finish up the surgery. Thank goodness my husband and my son’s girlfriend were there too so that we could discuss what the surgeon just told us. It is always interesting to see what each person remembers and comprehends.
We go upstairs to where my other son and my brother are and tell them what the surgeon told us. Now we are all quiet with a dazed look. We knew anything was possible but we never expected this. My other son and I were on our computers looking up everything pertaining to glial tumors and subependymomas. I need to understand exactly what this means in terms of treatments, follow-ups, and recovery. I do not have a half-empty or half-full cup…I have a realistic cup. I have to understand any complications, consequences, etc. so that I am not blindsided and can prepare myself for what may be ahead.
My husband and I are sitting in the waiting room, waiting for the call that our son is done with surgery. The last call we had told us that the surgery should be done in 15 minutes, but now it is 30 minutes, then 45 minutes and I am a wreck. Each minute feels like an eternity. In fact, the last 45 minutes seem longer than the last 10 hours. I am convinced something is wrong. Maybe he had a seizure, maybe his brain swelled, maybe he could not get off the respirator; the list was never ending. Now 50 minutes pass, 55 minutes, and finally, at 60 minutes, the surgical nurse calls telling us that he is out of surgery. She explains that our son is being wheeled to the recovery room and she will contact us when the nurses have him comfortable and ready for visitors.
I wish I could say I was at ease now. All we want to do is see him and make sure that he could recognize and understand us; that he could speak normally and move all his extremities…is that asking for too much? We get the call an hour later telling us we can see him now. We all walked quickly to the recovery room. Only one person at a time can see him so I went in first. It was a maze of hallways getting to his bed but I finally saw him.
Next post will discuss his recovery
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