I just deleted my old blog and thought I would try blogging again. I have always had a dream of writing a self help book. I feel like my life experiences, both good and bad have given me a platform to help others. My dream is to help others and to touch lives. I hope one day someone reads my blog or future self help book I write and say to me “because of you I didn’t give up.” because many times in my life the easiest road in the world to take would have been the road to just give up… but that isn’t me, I’m not a quitter.
If you would have asked me a year ago what the hardest thing I have ever gone through in my life, I would have said without hesitation that losing my dad to cancer when I was 16 was the hardest thing I have been through… But now a year later my answer would be very different. So what is the hardest thing I have ever gone through you might be wondering? That would be watching my 5 year old daughter go through a medical struggle.
Nothing makes you feel more helpless than being a parent of a child with a disability. But much more complicated than that… being a parent to a child with a disability that is an invisible illness. At 17 months old, my daughter began spells where she would pass out which would typically only happen when she was sick. She went through some minor testing at the time and we never got a name for it or any solid answers. Now move ahead from 17 months old to 5 years old… from the span from 17 months old to 5 years old my daughter would continue to have passing out spells and finally at 5 years old we were referred to a cardiologist at Hasbro Children’s Hospital where she had to wear a heart monitor for 48 hours and have a EKG as well as have a sonogram of her heart but at the time everything came back normal and so we were discharged….
If anyone knows me well they would know that I don’t take no for an answer, and as a mom I knew better and knew something was wrong and I wasn’t going to stop until it was figured out. At this point I never imagined it would be a year from this point that I would be still fighting for answers. And so time went by and Josephine’s passing out spells continued. We had made several ER trips and doctors visits because of them but it took until July 2015 when I had taken my daughter to the mall for the library summer program that my daughters condition would come to a head.
So there is my 5 year old daughter at the table coloring when all of a sudden she lets out this blood curling scream holding her stomach and crying saying she just wants a drink that she doesn’t feel well. I grabbed her a water from the drink machine and let her have a few sips and then boom! she turned grey, her eyes were rolling back, she was clammy and she collapsed right in front of me. Mall security caught the corner of my eye and I waved for help and they called an ambulance. From this point on our lives would be turned upside down…
Right after this major episode we were referred to Dr. Marx, a new cardiologist through Boston Children’s Hospital where he would put in the first piece of the puzzle to figuring this out. Josephine had an EKG done again but he felt that it wasn’t necessary for her to wear the heart monitor again since the results were normal before. Dr. Marx finally put a name on what was going on “Vasovagal Syncope” / “POTS Syndrome” Having a name for this monster gave us relief that now finally we could do some homework and figure out how Josephine can lead a normal life… If only it was that simple.
Kindergarten started for my daughter right after this appointment. This was a year of new beginnings and transition from pre-school to kindergarten. This was a year that we never saw coming… school started and everything seemed great! Great teacher, great class, great school, great progress. Until one late October afternoon when I got a call from the nurse that no parent is ever prepared for… “Mrs. Lavoie, we think your daughter just had a seizure.” My heart dropped and I ran out of the house leaving a puff of smoke behind me. From that moment I ran her straight to a pediatricians office where they felt that yes, it sounds like a seizure where an appointment was made at the local hospital for an EEG.
So here we are November 1st and my daughter has the hour long EEG with the flashing light test done but like I suspected the results came back normal and so we would now try to work with her doctor to find the next plan of action which would turn out to be the biggest nightmare of our lives. Four days later we brought my daughter to Tufts Floating Hospital for Children, everything seemed fine at first… the nurses were great, the child life specialist was wonderful… I was feeling confident until I met the doctor who I felt was cold and uncaring. Let me stop right here and tell all parents one thing… if you as a parent walk in for any medical care and/or procedures for your child and you gut is telling you no, something isn’t right or something feels wrong please trust that feeling!! I am begging you to because I wish I had and I almost lost my daughter because of it.
My daughter was put under with propofol which is something that my daughter was never put under with but she had never had any issues with medication so I didn’t think anything of it. I went to the sedated MRI room with my daughter… the moment they started the medication I knew something was wrong. She was having trouble breathing and then all of a sudden she totally stopped breathing and turned purple right in front of my eyes twice. She had two massive seizures on top of each other and when this happened the first time the doctor should have pulled out and wake her up but instead she tried again and it happened again. I was screaming and crying, I have never been so scared in my life. After the second attempt the MRI was scrapped and we headed home from Boston where I vowed that if an MRI was going to be done it was going to be done on an open MRI not sedated and that was my final answer and I would not budge from that.
5 days later we were referred to a neurologist at Tufts Floating Hospital For Children… at this point I said that this was this hospitals last and final chance and I was already digging in my heels on ever going back here again…. so went to my daughters neurology appointment. Nothing came of it, the neurologist told us this wasn’t a big deal, seemed annoyed that we were even there and to come back in three months if it’s still a problem. All they did was have her walk on her heels, walk on her tippy toes and blow on a pinwheel and checked her heart and blood pressure. I was livid and we walked out and told my daughter we were never coming back there again which was a relief to her since she was so traumatized from what had happened before.
So now fast forward to December 10th where my daughter had her open non sedated MRI and she did great which I am not going to lie, felt even better when the doctors said she wouldn’t hold still for it and she did! But the end result was a huge relief that my daughter was tumor free as well as chiari malformation free! The relief that came from this test was huge but at the same time it was still left unanswered questions as to what is going on fully… and so we chugged on…
January 23rd my daughter wakes up not feeling well and then suddenly she collapses on our bathroom floor. We called 911 and after a few hours in the hospital she was discharged with the diagnosis “vasovagal syncope” which was nothing new but because she was confused, unaware of where she was or had happened that was our cue to call rescue for her. It’s pretty sad that you have a protocol at home and at school that if she goes down and wakes up knowing what happened, where she is, etc. that she just needs a few minutes to relax and she will be fine but if she wakes up confused, disoriented and unaware of where she is then we call rescue. And so we would gear up for the next specialist…
January 29th we were referred to Dr. Bolton a neurologist at Boston Children’s Hospital. My daughters teacher referred me to him since her daughter see’s him too and I am glad we did! He was wonderful and patient and listened to every word we said and took notes and went through everything over her whole history and what was recent with a fine toothed comb. He didn’t like that we were running in circles with no real answers. He also agreed that the hour long EEG was kinda a waste of time because its just not long enough to see much and so he booked my daughter for a 3 day inpatient EEG at Boston Children’s Hospital March 18th, 19th and 20th, which is in 3 days from now. I feel confident that we are going to get somewhere and his ultimate goal is to get my daughter a treatment plan in place.
In 4 months makes a full year that all this started in a major way. In nearly a year my daughter has seen 2 cardiologist, 2 neurologist, 5 hospitals, 2 pediatricians, and several specialist, two 911 calls, several ER visits and being admitted… nearly every day my daughter complains of leg pain due to blood pooling in her legs, she often has drops in blood pressure which will cause her to pass out, she often has fatigue, nausea and headaches, she has developed reddish purple color in her legs upon standing, tachycardia episodes. Her episodes have gotten so chronic that we had to get her a pediatric wheel chair and disability stroller in times where walking is just too much for her.
It’s been a long year. When my daughter blew out her candles on her 5th birthday last year this wasn’t the year we had envisioned but now as we approach her 6th birthday in 9 days and Boston in 3 days, we pray that we will gain the answers and treatment plan we have been waiting for. But until we get to that point… we fight alongside our daughter to get her the quality of life and the help that she needs and deserves.
For right now we take it day by day and that is all we really can do. But through our journey we have had some pretty amazing people enter our lives and our daughters life that have been amazing supporters and we couldn’t be more thankful for them. It’s been a wonderful thing for my daughter to see that she isn’t alone in this fight and that she has a huge support system behind her every step of the way. So much so that several of us are walking in a POTS 5K in my daughters name to raise awareness and to help fund research to find a cure for POTS syndrome.