Yesterday was a very long day...mixed with moments of relief but mostly moments of trying to quell my near hysteria...the kind of moments where you just know that you cannot even talk or look someone in the eye or you might just lose it completely.
The neurologist came in this morning and examined Robertson and noticed that he had no reflexes in his legs whatsoever. He stated that it was highly unlikely that there was a tumor because usually the reflexes might be even more responsive than normal but they would definitely still be present. He had a new theory...Guillain-Barre Syndrome.
We still had to rule out the possibility of a tumor but once the MRI was completed, the doctor wanted to do a lumbar puncture to potentially confirm his diagnosis.
The earliest we could go in for the MRI was 1:00 pm and the doctors wanted to use a general anesthesia called Propofol. I was very hesitant due to a family fear of "not coming out" that my grandmother claimed resulted in my great-grandmother's death during a surgery. I was also terrified of a case in a nearby hospital where potentially bad decisions in regards to anesthesia resulted in the death of a small child that had gone in to the ER for a minor problem. So, I was really nervous about it.
My fears were put to rest over and over by various doctors and nurses who all confirmed the same statement that this specific anesthesia was very safe and very light sedation that was very quickly reversed...usually right at the end of giving the medicine, the patient would just pop back awake. I was encouraged and agreed.
I walked over to the MRI building with the tech and was able to be in the room as the anesthesiologist administered the medication. It was a bit disconcerting to watch Robertson talking to them about our dog, Cookie, one second and then flopped over in a dead weight the next.
I waited in the hallway for a good while and read my scriptures, skyped with my daughter, and tried not to think too much...the nurse came and told me that he had seen the first pictures of the MRI and did not see any brain tumors at all. He admitted that there still could be something but that it would not be a large tumor or he would have seen it.
I was so relieved and felt like I could breathe again. He could see that I was strung tight and sat and talked with me for awhile. I saw tears welling in his eyes as I unfolded the story of our last week, starting with Emily's grand mal seizure. He made the effort to come out and update two more times and I believe he was one more angel placed in our path...
Finally, they brought Robertson out and I imagined that he would likely be awake already or at least showing some signs of moving around. He was *very* under the influence and still completely out.
I asked about it and the anesthesiologist assured me that it was normal and he would be awake in 30 min. or less...and soon after reaching the recovery room, she went on her way.
The recovery room nurse started chit chatting with me and we waited......and waited....and waited......
At the 40 minute mark he went over to Robertson and moved the sheet under him a little and Robertson's heart rate immediately shot up and he began hard twitching in his upper body. It looked just like a seizure but the nurse wasn't entirely sure. The nurse decided to leave him for awhile longer and not try to wake him up.
As the time kept ticking, I was growing more and more anxious.....now we had gotten to an hour post-anesthesia and he was still completely out. Wasn't he supposed to just "pop out" of this specific anesthesia?
The nurse began to shift from foot to foot a little and admitted that it was taking a bit longer than normal.
I began to run my thumb across my hand repetitively...something I don't think I've done before but I guess must be what people do when they "wring their hands". The nurse began to try to engage me in conversation. I knew what he was trying to do but it really did help to focus on benign things like, where I had worked for the hospital and what my degree was in etc
At the hour mark, the nurse tried again.....with the same result. Robertson's body was shaking and convulsing, his heart rate was rising...but there was no Robertson. I felt cold paralyzing fear run up my legs and they began shaking. I started stroking his head and silent tears began to fall....the nurse asked me to help to call his name...but I just couldn't. I couldn't make a noise.
At an hour and fifteen minutes, the nurse tried again and he finally began to move but in an odd unconscious flailing manner with drool profusely escaping his mouth and soaking two pillows and the sheet underneath. His body was attempting to cough but truly couldn't and the nurse explained that he felt the prior twitching was not seizures but was his body attempting to cough.
I kept stroking his hair....The nurse tried to re-position him each time his body lurched, but in one large and still nearly unconscious moment, his body hurled across the bed and his face slammed into the hard metal bar of the bed. I let out an odd stifled sound....I wanted to scream.....we moved him back into a comfortable position and waited again. This drooling, unconscious, sometimes moaning, little boy that I saw before me didn't look anything like my baby....Oh Heavenly Father....where was my baby.....
At about an hour and a half after the anesthesia was stopped and a full hour longer than was ever expected...Robertson finally began to open his eyes.....he looked over at me.....and he immediately reached toward me with both arms like an infant who wanted to be picked up. I held him and cried and kissed his head with an amount of relief I don't think I've ever known before.
We were moved to the ICU and the neurologist came in to explain that there were no tumors but he believed that Robertson did have Guillain-Barre syndrome and wanted to start treatment immediately....it is a progressive auto immune type disorder that comes with increasing weakness and paralysis which can be extremely serious if it gets to the chest and affects the heart and lungs or has an affect on the ability to swallow.
I will close for this morning with saying that he has already started treatment. Last night was rough, involving arm pain while the burning steroids went into his IV, pain in his stomach and vomiting, the need to cough but being too weak to be effective, and an inability to eat due to concerns about his swallow (he will be evaulated this morning)
However, in the wee hours of the morning, Robertson wanted me to lay with him in the hospital bed and we cuddled together and talked and I felt like my baby was slowly but surely coming back.
Last night, I thought about those that have called, emailed, came to visit and have posted comments on this blog.
This comment was short and simple but really touched me...
"I'm praying for you tonight (hear, in Germany,
where I live it is already night) and I lit a candle for little Robertson."
Thank you to all of you who are praying and sending love to my son. Right now as we speak...we are watching the sunrise together....