On May12th, 2012 it was a sunny warm day with temperatures around 70-80 degrees, abnormal for May. Carrissa woke up with a headache; we didn’t think anything about it because migraines and headaches were normal in your house. I get migraines, Carrissa would get migraines and so would her brother, Garrett. Carrissa then got physically sick, again nothing unusual, she and Garrett would both get sick when they had migraines and then they would feel better and the migraine would go away.
We decided that we were going to go to the batting cages and practice for Little League. On the way Carrissa asked to pull over and she got physically sick again. At that point we headed home and all I wanted to do was to have her rest, figuring she had a 24 hour stomached bug. We stopped and got some ginger ale on the way back for her to sip and settle her stomach. We dropped Garrett of at a friend’s house, Carrissa got out and was walking around, she was then next to the car and laughing saying, “Mommy look I am drooling.” We then went home and Carrissa relaxed on the couch, she still complained of a headache again and about 7 pm we sent her to bed. When she got off the couch she again started laughing and saying, “Mommy I see two of you.”
About 12 am I could hear Carrissa in the bathroom getting sick again but she did not go back to her bedroom. I got up to check on her and she was sitting next to the toilet. She looked at me and said, “Mommy I can’t get up.” I helped her get up and walked her back to her bedroom, had her drink some more ginger ale. I asked her if she felt better and she told me yes. At 4 am she was up again getting sick and once again I walked her back to her bedroom thinking if this happens again we are going to the emergency room. Carrissa then slept until 7 am; when she woke up I had her sip some more ginger ale. Not even 5 minutes later she was up getting sick. We then headed to St. Mary’s emergency room. Happy Mother’s Day!!!!
When we arrived at St. Mary’s (Seton Health) I checked her in as she walked herself to the bathroom to get sick again. When we finally got in to the emergency room to see the nurse I told them she was dehydrated and she probably needed an IV. I was thinking if we can just get some fluids into her she would be okay, she didn’t have a fever so she just must be very dehydrated. The emergency room doctor ordered a bunch of tests along with a CAT scan but she didn’t want to give Carrissa the IV yet. All tests came back negative so they went ahead and started the IV. As we waited Carrissa talked about numbness on the left side of her body, she was still drooling on the left side of her mouth but she was able to chew ice chips without any issues. When the doctor came back in she said that she wanted to do some neurological tests. At this point Carrissa’s eyes were twitching back and forth uncontrollably, she was still drooling and she still complained of numbness on her left side. As the doctor did the neurologist tests, Carrissa would put out her left hand and it would droop, the doctor performed this and other various tests several times. The doctor looked at me and stated, although all of the test we have run are normal, the neurological tests just don’t seem right. We don’t have pediatric neurology here so I am recommending she be transported to Albany Med for further evaluation. My heart sank, all I could think of is, what is going on with my daughter? Isn’t this just the stomach bug? She just had a normal headache. We were then transported by ambulance to Albany Med. Carrissa was still talking to all of us; she could remember the names of the nurse at St. Mary’s, the driver of the ambulance and the nurse that was taking care of her in the ambulance.
It was now approximately 5 pm and we arrived at Albany Med, what a mad house, so many people, so many doctors. We were put in the pediatric area in a room by ourselves. The emergency room doctor’s came in, there were 3 doctor’s and a nurse and they started asking us all the same questions that we had already been asked. Carrissa at this point just wanted to turn the lights off and sleep. She couldn’t get up and her left side was still tingling, her eyes were still twitching, she was still drooling on the left side of her body and she now was seeing two of everything. She just wanted to close her eyes and sleep. We were then told that the pediatric neurologist would be there shortly. As we waited more doctor’s (which we thought were doctor’s, only to find out later they were med students) came in and asked us the same questions we were already asked. We were starting to get frustrated but we waited. We had emergency room doctor’s telling us she may have Lyme disease and they wanted to do a spinal tap, we refused and stated that it was going to be a last resort if they couldn’t determine what was wrong.
Finally, at 10 pm the neurologist came into the room and performed neurological tests. Carrissa’s eyes were still twitching uncontrollably, her left side still tingled, she was drooling from the left side of her mouth and she was still seeing two of everything. I thought, yes, we can now have some answers and get Carrissa some medicine and we can go home.
The doctor put a pin needle on her foot and arm, Carrissa could feel it. I thought, thank God, a good sign. The doctor said that they were going to admit Carrissa and they wanted to have an MRI done ASAP. About an hour later we were transported the pediatric wing of Albany Med. The nurse informed us that she would be in every hour to check Carrissa’s eyes and vitals until we could have the MRI done. For the next 4 hours the nurse came in and woke Carrissa up to check her, Carrissa hated it, she would scream to be left alone, she just wanted to sleep.
Finally, at 2 am on Sunday, they came to get Carrissa for the MRI. All I could think was good, we can now finally have some answers, treat her and I can get her home so she can sleep. Little did I know that it was going to be awhile before we were going anywhere. We headed down to the MRI room, way at the bottom basement of Albany Med.
At 5:30 am the Doctor came in with the MRI results, we were told that the MRI was inconclusive and they still weren’t sure what was wrong with our Daughter. They wanted to do a Spinal Tap and an additional MRI of her spine and lower part of her brain. We then proceeded to see an Infectious Disease Doctor, a Pediatric Neurological Surgeon and a two Pediatric Neurologists. No one had any answers and the additional MRI’s were ordered.
At this point Carrissa was still seeing two of everything and it was easier to close her eyes and sleep than to have them open. She could not walk because her entire left side had no function, she continued to drool from the left side of her mouth. We had a portable chair potty next to her bed so she could go to the bathroom. We were afraid that our daughter would never walk again and we were concerned she had a brain tumor or possibly tumors. At 4:00 pm on Sunday Carrissa was sent down for her additional MRI’s.
Monday was here and we still didn’t have any answers. We didn’t have the result of the additional MRI’s. In the morning we continued to see the Neurological Surgeon’s to discuss where the lesions were on her brain. They were concerned where they were. They were in a spot that they did not want to operate.