Why I am Terrified of The Flu More than Ever
Since I was not blogging most of last Spring most of you did not even know that Maizie became very sick. We were still living at our home in Indiana. J (Maizie's Dad) had left us on Christmas Eve and our lives had been in total upheaval. Maizie was stressed to the max and crying daily missing her Dad.
J had a visit with Maizie one night. He was gone with her about an hour when he had to bring her back due to her going into a bad CVS spell. J brought her in the house and within minutes he left.
Maizie was so sick with this CVS bout. Me and Maizie were in the living room and it was around two in the morning. She was in pain and vomiting from the CVS. I was cleaning up her latest spell when someone began knocking on our door with a force that sent a chill down my spine. I grabbed my cell phone and peeked out the window. Darwin instinctively knew something was not right and began showing his teeth and growling like I have never seen. I was not super scared until the two hundred plus man began hurling himself against our door repeatedly. When he began doing that I felt like I was going to collapse in fear. But then I looked at Maizie. She was sick and totally helpless. Staying calm was top on my list of priorities.
I called the police. Normally they would have me stay on the phone until a police officer arrived. For some reason they cut the call and I waited. And waited. And waited. As we waited the large scary man continued to slam his entire body into the door. Obviously he wanted in. He was yelling, "Bitch! Let me in!" He used some other colorful language that I won't repeat here.
Maizie was panicking and saying, "Mom! What does he want? What is wrong? Is he going to kill us?"
I told her to be calm and sat next to her hugging her as Darwin stood stiff at the door growling like a wolf. I was so proud of him.
Fifteen minutes passed and still no cops. Maizie began heaving and vomiting. I was holding her up while listening to this freak outside scream and hit my door. It felt like he was never going to stop. I called the cops again and they said they were unsure why no cop had arrived.
Suddenly everything was quiet. I looked outside and saw the man pissing on our porch and then jump into a car that had stopped in front of our house. He was gone and I was beyond relieved. Apparently he was "relieved" too. Sigh.
Maizie on the other hand could not relax. She was terrified. Understandably so. As my readers know this was not the first scary incident we had in our beautiful historic neighborhood. Unfortunately, a loser landlord let crack heads deal drugs out of the apartment house that was about three feet from our home. To this day Maizie mentions this incident at least once a week.
I texted Chris in the middle of the night telling him what was going on. Chris said, "Marla. You and Maizie will come to live here with me tomorrow. I will not take no for an answer." I felt such intense relief wash over me. With Chris I always feel safe.
It was probably not the best time to make a six hour trip with Maizie but I felt in the long run it was the best thing for both of us. I was also fed up with the hospitals in our area that did not know the first thing about Maizie's diagnosis yet alone CVS. Granted, at that point she was not needing to visit the hospital so I knew it was pretty safe to drive with her.
My parents were supportive and were beyond helpful in making sure me and Maizie had everything we needed.
The next day we made the six hour drive to Iowa. A new home was waiting for us.
Within days it became evident that Maizie's CVS had been compounded with the flu. She was losing weight rapidly and was unable to keep any food or drink down. A bad fever washed over her and what came next haunts me to this day.
Chris and I watched in horror as Maizie began to have seizure after seizure. She could not walk and was not coherent. In between the seizures she was having CVS spells. Chris carried her everywhere. I am quite certain Chris has never seen a child as sick as Maizie was. I remember saying, "Are you sure you want to sign up for this Chris? It is not easy and this time of year has always been rough." He did not hesitate and told me he loved me and he loved Maizie.
At the time his girls were with us. I packed up Maizie's bag and Chris wrote me directions to The University of Iowa Children's Hospital. I left in the middle of the night once I thought Maizie was okay for the drive.
Once at the hospital they just knew when they saw her. She looked bad. Very pale, her eyes were rolling back in her head and she was listless and dehydrated. They took us right back to a room where Maizie was hooked up immediately to an I.V. for fluids.
I went through Maizie's complete medical history as the Dr. requested. It was exhausting and my memory was taxed considering the hour and my nerves were shot. Of course they wanted to know why we were in Iowa and not Indiana so I had to share that mess of a story too. It sucked.
I was amazed when the doctor finally nodded when I had finished telling her everything and she said, "We are dealing with a very complicated child here. (Granted, I have heard that a million times.) This is what we will do...." I about fell out of the chair. Someone knew what to do?! I had never heard a professional sound so confident.
Normally I hear this, "She has what? Where did you get this diagnosis? " Whenever I heard that I wanted to throttle the emergency room doctor. It always felt like I was being suspected of neglect or abuse or who knows what. Lets just say I was never treated like a mom who had been in the hospital with her daughter many times before for this same situation. I was never before treated like a mom who knew what the hell she was doing to care for her daughter.
Here, I was treated with respect and they knew immediately that Maizie was in trouble. The only mistake they made was sending us home that morning. Within a short time we were right back at the hospital. Maizie went home with pneumonia, CVS that was out of control and the flu. They had not caught the pneumonia. When I took her back she was admitted and there we stayed.
Maizie was so sick that they were not sure if she would survive. I thought I was going to lose it. With everything we had been going through this seemed like more than I could handle. I reminded myself that Maizie has proven herself to be a fighter.
Maizie was set up with a pediatric neurologist, a pediatrician who specialized in difficult special needs cases, a psychologist who specialized in eating issues since Maizie was refusing to eat when she was getting better and a case worker to help us get local services. It was amazing. Much better than Indiana. Night and day difference. Granted, she still does not have services here but that is another post all together.
Finally Maizie did get better and I was able to take her back to our new home with Chris. She slept and slept some more. Recovering from that bout of illness was one of the most difficult struggles I have ever seen Maizie go through. Not only was she incredibly weak but she was mourning the loss of living with her mom and dad as a couple and she missed her Dad.
I was criticized by some for leaving Indiana so soon but I don't regret it. We are now near one of the best hospitals for a child like Maizie and in a school system that takes her health very seriously.
Which brings me back to the flu. I am trying hard not to be paranoid about the flu. Maizie's doctor insisted that everyone in this family have the flu vaccination. Chris, Maizie and me were all vaccinated. The girls are still waiting for more vaccinations to arrive to this area. None of us have had the H1N1 vaccination because it has not been made available here to anyone.
A few weeks ago four children in Maizie's class and one aide went home with the flu. One of these children had a sibling that was diagnosed with the swine flu. At the pediatrician's request the school notified me of half of her class being out sick. I removed Maizie from school and she was placed on Tamiflu for ten days. This week the children in her class were back and well so I sent her back. Thursday her best friend in her class went home with the flu and my mind began to run wild.
It hit me then that I can't keep Maizie in a plastic bubble. I can't keep her safe from all of these germs. The pediatrician tells me I just have to do my best to help her stay healthy. It is a balancing act because I don't want to become super paranoid and make her stay away from public places and I certainly don't want her to miss too much school. She is loving her class and thriving there. Thank you God!
So how do I balance my fear of Maizie catching the flu and it leading to another scary hospitalization? Add in the obsessive news coverage of this seasons flu outbreak and you have me...a very nervous parent of a special needs child.
I know I am not the only parent out there pleading, "Please! Please wash your hands and keep your fingers out of your mouth and off of your face." Did I mention that Maizie's latest anxiety coping method is putting her fingers in her mouth. Argh.
How do you keep from wanting to keep your child home every time you hear of an outbreak? Especially when the doctors advise me to pull her out of school at the first sign of an outbreak. There will be more flu outbreaks at Maizie's school. Obviously.
I wonder how many more times Maizie will be on precautionary doses of Tamiflu?
Breathe Marla. Breathe.



16 comments:
Wow. If you read all that and you are now taking the comment I am so in awe. That was a long one! Thank you for reading!
Hi, I don't worry 'too' much abotu the flu other than that Chopper and N3S have asthma which freaks me right out (but I'm trying not to think about it). Both of them will be on the priority list for swine flu vaccination as will Maisie. Trust me, I know this for a fact. Also you and Chris should be on the priority list too though not sure if the States varies from the UK on this on but Chris's girls won't be on the swine flu vaccine priority list as they don't live with you full time. And, for healthy people, we need to keep in mind that for most it is 'just' a flu and that more people have died of seasonal flu each year than swine flu so far.
Well, I hope you all stay healthy. This H1N1 isn't anything to fool around with. I think I had it (or some flu) lasting a week a couple months ago, had one good day, and then have been sick with a cold ever since. Feel really weakened.
Glad you moved to a safer area, with better hospital care, etc. Should take some stress off you.
Holy Cow! Marla, I'm so sorry you and Maizie went through all that! But, what a Godsend that you were able to move and things are so much better.
I completely understand your fears and share them to some extent. Obviously, where I'm homeschooling Nik the school thing isn't as big an issue. But we still are anxious. Especially as there have been some deaths in our area and there's still no H1N1 vax available.
Sending you prayers for a flu-free and healthy winter for the entire household!
Oh wow, hugs and kisses to you and Maizie. I know how scary seizures can be but what you want through was just horrific. I'm so happy for you though, Marla, to be with someone who loves you both so much. And yes, I too have been extremely paranoid about the flu.
Wow, you have been through a lot. The next time I am having a hard time keeping it all together, you will be my inspiration.
Welcome Back Marla! :) Our schools here are back in session after having been shut down since last Tuesday. So far, we're alll well in my household, but I'm crossing my fingers in hopes my boys don't get sick before i get them vaccinated.
I'm glad you are in a safe and happy place now. Sounds like you and Maize survived some horrific experiences over the winter/early spring. As always, I love your pictures, and have also noticed the beautiful new "topper" for your blog as well. You all look happy and in good health. May it all continue for you. : ) take care, jml.
how terrifying Marla! I worry too. We aren't getting the shots at this point but there are times I second guess my thoughts on that. Mathieu is horrible at rubbing his face and putting his hands in his mouth. He also never covers his cough and has no issue with coughing in ones face. But I'm working hard on keeping him in the cleaning mode and advising him how to stay healthy. He has to learn and he also has to give his immune system a chance to build and fight these kind of things off. But still there is that little voice of doubt.
I'm reading other mommy bloggers who are anticipating 'lock down' for the winter. Lock down from exposure to germs. Reducing all risk.
Can you get academic materials from her school for days that you choose to keep her home?
Have you ever tried to substitute one behavior for another? Meaning give her a substitute for putting her hands in her mouth. Do you have an OT you can ask?
Best, Barbara
Christmas Eve. Class act.
Good to see that you're doing so much better now (at least well enough to write about it-I can never write about stuff while I'm going thru it).
The flu is scary, but as was said, fortunately most cases aren't fatal.
Joe
I am so sorry for all that you went through last winter and am glad that you are in a much better place now (both with Chris and with doctors that respect you and Maizie).
My son had the seasonal flu last year and he was weak and tired for a good two weeks. So I am hoping he doesn't get it again, and we are avoiding anyone else who is sick and not playing at McDonald's etc right now. We don't get flu vaccinations, but that's our personal decision based on Michael's individual health concerns.
That is so scary! I'm so glad Maizie is ok and that you are now working with doctors who listen to you and know what to do. That's also great that the she likes school and they call when kids are out with the flu. I hope she's able to avoid it this season.
I'm so glad you're back. And well.
In my thoughts and prayers- by all means, keep the girl healthy!
"All parents across the world : Please! Please get your kids to wash their hands and keep their fingers out of their mouth and off of their face."
Couldn't agree with you more on that one Marla! I too am paranoid for Abigail and wonder if her health fragilities will enable her to effectively fight off the H1N1 flu if she gets it .... so all the precautions in the world have been taken. We all have our personal tube of anti-virus hand-rub and Abi's brothers have strict instructions to wash their hands ALL the time.
That was a scary flu episode you went through there ... hair-raising.
Stay well you two!
Alison and Abi
Wow, Marla! What a terrifying ordeal! I'm so glad you are in a better place now and hope you all stay healthy this flu season.
I am going back and reading the posts that I missed. Remind me to tell you about my Tamiflu experience (if I haven't already). I'm glad that it works ok for Maizie!
-Felicia
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