Sunday, March 13, 2011

The words no parents want hear...

     Two and a half years ago, our lives were changed forever when an ER doctor uttered words that no parent expects to hear: "Your son has had a stroke."
     The journey began 4 weeks earlier when at the age of 2.5 years old, Matthew had his first seizure. He had been playing with Sarah, then 4, when he came to me and crawled into my lap. He was very still, and I thought he had fallen asleep. I tried to readjust his weight, and realized his eyes were open, but rolled back into his head ticking back and forth and he was stiff as a board. When I moved him, his body remained frozen in place. As I yelled for a kid to bring my my cell phone, I laid him on the couch and he turned blue. He had stopped breathing. He started again within a few seconds and seemed to come around, his little body no longer being rigid. As the first responder arrived, he fell into an uneasy sleep, and then started vomiting. By the time the ambulance got to the house, he was again unresponsive, in what we later learned wast a postictal sleep. My neighbor came to sit with the older kids as we were raced to the emergency room.By the time we arrived at the ER, he seemed to "awaken" and became himself again.
     Unfortunately, the level of care received at the ER was not what I would call within the standard of care for a two year old who had just had a massive tonic-clonic seizure, (formally called a grand-mal.) We were put in a room and an EKG was run, and then I was left alone with Matthew for 45 minutes until a doctor walked in to say that Matt had had a seizure and would be okay and we could go home. No other tests, nothing. In the following weeks, I filed complaints with the heads of the ER and the whole hospital.
     Needless to say, I was terrified and scared as I drove home with my baby boy. The next day, we went to see his pediatrician who told us that 10% of children have a seizure at some point in their lives, and only 1% of that 10 will go on to have a problem. (True). He dismissed the seizure as a one time thing, but sent us for an EEG at the children's hospital in Norfolk.The EEG was normal, so life was guardedly resumed.
     Four weeks later, life had become normal again, with the exception of a few nagging situations that I now know were seizures. Once day he climbed into my lap and he felt so hot, feverish. He fell asleep for 20 minutes, a very deep sleep, and then woke as if nothing had happened. This and a few other incidents had me uneasy and confused, second guessing myself.
     We had hope that the seizure was a one time thing and would not reoccur. It was a Sunday evening and Andrew, who is 10 years older than Matthew was supervising as Matthew was taking a shower. He yelled for help, and Tom ran to see what was wrong, then yelled for me. Matthew was face down in the shower in the throws of another full-blown tonic-clonic seizure. Since the last one was so fresh in my mind, I knew what to do. I scooped him out of the shower, wrapped him in a towel, and laid him on the bed- knowing there was nothing I could do to make it stop. Meanwhile, I dialed 911 and had one kid pack a bag for the hospital, and had another kid get Matt clothes. This time, after the seizure he fell asleep immediately. As we waited for the ambulance, I slipped clothes on his body and called my mom. I knew this trip would be different because this was a second seizure, and I had researched what we needed to do if one did occur again. This was an especially scary moment for Tom, because even though I have dealt with anaphylactic shock on more than a few occasions and several broken bones, he had never witnessed anything going wrong with one of his children.
     This time as the ambulance sped to the hospital and Tom sped behind us in his car, Matthew's heart rate and breathing were erratic and he was very confused. It is such a scary thing to see your little 30 pond 2 year old hooked up to a bunch of monitors as they are all buzzing with alarms. When we arrived at the ER this time, the there was a team waiting for us outside. A CAT scan and EEG was ordered, and blood work was started. Matthew awoke but became very combative- screaming and hitting everyone around him. We were wheeled into the CT scanner and I had to leave because I was 7 months pregnant, so Tom stayed with him throughout the scan.
     As we waited in the room for the results, we were both sort of shell shocked and trying to deal with what had happened. The doctor walked into the room with a very grim look on his face and sat us down. I had this sinking feeling in my stomach and I was so scared about what he was about to tell us. He then made a statement that will remain burned into my mind for the rest of my life. "Your son has had a stroke." It seemed to me that all time stopped in that instance and I was terrified. What do you mean?! 2 year olds DO NOT HAVE STROKES! The doctor went on to explain that it was not a recent stroke, but likely one that occurred at or within the first few weeks of Matthew's birth. Because of this, the doctor said, he had 2 small areas of damage/ scar tissue in his brain that was leading to an imbalance of electrical currents and causing the seizures. Seriously, how does a parent deal with this information?!
     I was terrified, blaming myself for giving birth to him at home, for not noticing that something was wrong with my baby, anything. The doctor at the ER, and later doctors,  explained that even if he had been born in a hospital, the stroke would not have been prevented. Matthew was born with aortic stenosis and a bicuspid valve where the tricuspid one should be. There had been a clot in one of those two places that traveled to his brain. Babies are so resilient that they can have a stroke and recover quite rapidly. I remembered a time when he was about 2 weeks old and looking sort of gray. Since my other children had such severe food allergies and many times I have had a newborn with problems due to that, I had thought about nothing but allergies. I especially had not even thought that my new baby could have had a stroke! It took me a few years to get over the guilt I felt with the whole situation, to know that I did nothing wrong, and that God had blessed me with this special child for a reason. Back to the story...
     The night of the second seizure, we were released from the hospital and told to see our regular doc the next day to get a referral to see a neurologist. Once again, the pediatrician downplayed teh situation, even questioning if he had actually had a seizure or just a  response to some pain or irritation. He did, however, schedule an appointment for 2 days later with the neurologist in Norfolk. I left the office angry that the doctor wasn't as concerned that I was.
     That same evening around dinner time, Matthew had another seizure. This one was not as bad, and it was over quickly. Yet another followed an hour later. I was so freaked out, but knew that going to the hospital was not necessary. (We had been told only to call 911 if the seizure lasted more than 4 minutes.)We went to bed on pins and needles, not knowing what to expect. At 3 am, he had another seizure. (I am so grateful that we co-sleep with our babies, because I was able to wake up and be there for him. If he had been sleeping in another room, we might not have ever known.) He had 2 more seizures before 7 am. I knew that when we awoke he needed to be seen that day, so I called the neurologist when they first opened and explained what was happening. They agreed to see him immediately. In the time it took for my baby sitter to get to the house, and for Andrew and I to drive to the hospital an hour and a half away, Matthew had 5 more seizures. Each of them were lasting between 30-60 seconds, with a brief period of sleep in between.
     By the time we arrived at the office, I felt like everything was spinning out of control. Matthew was pretty much out of it, just curled up in a ball on a chair, not really aware of anything going on around him. The doctor took one look at him and said, "You have two choices. One- put him in your car and meet me at the emergency room NOW, or two- I will all an ambulance." That is when I really started to get scared. On the way to the ER, I called my mother, who jumped into a car and started driving.
     At the ER, they took Matthew immediately for an EEG and started him on an IV drip of Depakote, (an anti- convulsant). The EEG was grossly abnormal and he was experiencing something called a status seizure- meaning he was unable to stop seizing and because of this, he was admitted to the hospital. My mother and sister arrived as we were being transferred up to the ward. I must say that I am so proud of how Andrew, who was 12 at the time, handled the situation. He was such a wonderful support for me that day, and later used his knowledge on how to treat a seizure patient with his fellow boy scouts.
     Once on the ward, we were told that the priority was to get his seizing under control, then to schedule an MRI to find out what was going on in his brain. Because he was admitted the day before Thanksgiving, we would have to wait 2 days for the MRI. Matthew responded  quickly to the IV drugs, and by that evening was somewhat back to his usual self. My mother had traveled to my house to help Tom with the kids, and my sister Lauren stayed to keep us company. Lauren and I fell asleep kind of late because we were chatting.  
     Around 3 am, Matthew had another seizure. Lauren described it as a robot stuck like a broken record, just repeating the same motion over and over. The nurses rushed in to catch the tail end of the seizure, and the administered atavan to prevent another. That is when things got hairy! As they were pushing the drug into the IV, Matthew began this maniacal laughter. Every movement was exaggerated to him and he thought everything was so funny. It was fun at first, making him laugh by making a face at him, nodding out heads when he said he saw a train outside the window, helping him "catch" bugs in the air. Then, it all changed. He started screaming because of the "bees" all over the room. He screamed literally for almost 24 hours. Atavan and Matthew do not like each other. Thanksgiving was spent with Matt crying the entire day, cafeteria food, and the support of my sister. I truly think that if Lauren had not been with me that day, I would have lost my mind. Matthew would not stop crying, he would not sleep, he would not eat. That evening, he blew his IV line out. We had to go to a special procedure room to have another one put in. They wrapped him in a "burrito" sac, effectively pinning him down. The child had cried all day long, and as they tried 8 times to get another line in, he just watched them do it without crying. When they finally got the line in, the crying resumed and continued until almost the next morning. The nurses refused to give him anything to help him sleep since he was to undergo anesthesia the next morning for the MRI. Finally, he fell asleep and I think we had a 2 hour nap before we had to get up for the MRI.
     Matthew was taken to a holding area, then loaded on a gurney and whisked away for the MRI with anesthesia. While the test was happening, I washed my clothes in a courtesy washer on the ward, and I think Lauren slept. When I was able to see Matthew again, he was pretty sleepy and we spent the afternoon napping.
     The MRI showed 2 small areas of scar tissue in his right frontal lobe. His official diagnosis was childhood epilepsy. The brain damage also explained his delayed speech and development. We were released from the hospital with Valium in case of a seizure lasting more than 5 minutes, a script for depakote, and a small hope of him possibly outgrowing the seizures. I say small hope because when you are in the middle of it all, and everything is so new and scary, it is hard to imagine life ever being normal again.
     Over the next few months, I joined the National Epilepsy Foundation, researched everything I could. I discovered other famous people who dealt with epilepsy, I was determined to help Matthew through it all. Matthew developed several different types of seizures and I became very good at recognizing them. He spent 6 months just coping on a daily basis, trying to make it day to day. His left eye would droop markedly before an episode. By far, the most common type of seizure was the staring seizure. He seems to always have an "aura", or premonition, that a seizure is about to occur. He would come to me and say, "Mama," and then stare off into space before refocusing again on the world around him. The episodes would usually last 10 to 30 seconds, and he would have up to 10 a day at times. At times his balance and coordination would be off. Once, he tried to climb on my bed during an episode and fell and broke his wrist.
     It was during this time also that we discovered that Matthew was having major neurological issues at night, and had been having them since he was born. Since birth, he had never slept more than 2 hours at a time. EVER. As a baby he would do what I termed "alligator death rolls" on my chest in the middle of the night. He had always required very hands on attention at night. He also, since birth, would have screaming episodes that would last 6-8 hours at a time, usually at least once a week. He would just sit in bed and scream. His eyes would be open, but he was not really there. Tom and I had gotten so used to it, but we were so sleep deprived we could not function. It wasn't until my mother witnessed one of these episodes that we realized it was all related to the epilepsy. I have to say that even with his night issues, I REFUSED to put him in another room, to leave him alone while he cried. Even though he would cry all night long, I knew instinctively that something was not right and that my baby needed me. Just the thought of leaving him to cry it out makes me sick. I know in my heart that keeping him close by was, and is, the right thing to do.
     It was about a year and a half before the proper dosage of meds was worked out and he stopped having seizures. He has caught up significantly in his speech and development, only showing a slight delay. We had him tested by a developmental pediatrician. He is extremely smart, but has cognitive, speech, and developmental delays that will fade as he gets older. It has been a year since his last seizure.
     Now, HOPE.........In two days, Matthew and I will travel to and spend the night in the Ronald McDonald House in Norfolk. The next morning he will have an EEG. IF the EEG is clean, we will begin the process of weaning him off of the drugs in the hopes of no more seizures. As I mentioned above, I never thought that we would have this day, especially only 2 1/2 years later! I am terrified that the EEG will not be normal, because I am longing for my son to have a fair shake at life. I am praying for my little boy to be "normal." In the moment that the doctor told us that Matthew had had a stroke, all of my hopes and dreams for Matthew seemed threatened, changed. I have come to realize that I still have the same hopes and dreams for him, and that there are different paths available to those dreams. I somehow suspect that Matthew will always be a bit "different" just because he is Matthew, but I am praying for his to be completely healed of all seizures now, and forever. I am praying for the day when I no longer jolt awake because he sneezed, thinking he is having a seizure. That journey may begin Tuesday...............

1 comment:

  1. Bethy...I just wanted you to know that I love you. Thank you for being my friend. Your post on my blog made me cry...because I felt so very very loved. Thank you for loving me. Thank you for being you. You've been a treasure in my life from the beginning.