Before the Flu Shot Debate Starts

Flu season brings out many opinions. The only thing most people can agree on is that getting the influenza virus is miserable.

Prevention of the flu is another story.

Fairly soon, flu shots will start to be advertised and given. That's when all the debating will start. To vaccinate or not, that is the question.

There are people who are anti-vaccine when it comes to the flu shot. Some of these people are against vaccines in general, so naturally those people will not run out and get flu shots. But, there are many people who believe in vaccinations for the most part but aren't interested in the influenza shot. To each his own; that's my viewpoint. If you don't want to get the flu shot, I don't care. It doesn't bother me.

What does bother me is the information shared by those against the vaccinations. It's very easy to share things on social media. Not every article is legitimate. To quote President Trump, some of it is, "Fake news!" You can read some of the fake news articles called out on this piece on HuffPost.

I'm not a doctor. I don't know all the ins and outs of the flu vaccine. But when people share things online like "I hope my family members aren't getting flu shots," with an article warning about some aspect of the flu shot, I want to sigh. Some of these articles warn against about future infertility, toxic ingredients, and terrible rare side effects. I have had other adults ask me about flu shots and voice concern over things they have read on Facebook. Fear has become attached to the vaccine because of some of these posts. Some people are very confident in their anti-vaccine opinion. I hope that they have read and researched from more than one source of information before they share. I will admit, I haven't spent hours and hours researching flu shots. I only know one piece of critical information.

I started getting the flu vaccine when my daughter was young. I can't recall when I first vaccinated her for the flu. I am guessing it was age 1 or 2. Her doctors have always stressed the importance of the flu vaccines. Every doctor. Each cardiologist, pulmonologist, ENT, and primary doctor my daughter has seen over her 12 years of life have all asked me repeatedly during flu season if Jaycee was vaccinated. To which I have always said yes. (And yes, I have heard the whole viewpoint that every medical professional is pro-vaccination because it's a money maker.)

For our family, we can't risk getting influenza. Jaycee's two heart conditions, asthma, sleep apnea, and other medical conditions mean that an influenza virus could be dangerous for her. Back in 2011, Jaycee came down with Influenza A. During the illness, it triggered an extremely fast and dangerous heartrate in the 200s and led to the diagnosis of Wolff-Parkinson-White syndrome. It was scary as she had to have medications administered to slow her heart rate down. Even though Jaycee was vaccinated, she still caught the virus. But, that moment showed me how unpredictable the influenza virus could be in Jaycee. Since then, I have never questioned getting the vaccination for both of my children and myself. Even though the shot didn't keep her from getting it, I was glad I had at least tried to protect her from it.

In January this year, influenza hit our community hard. I hoped our flu vaccinations would protect us, but it didn't. My son started showing symptoms before bed one night. The next morning, I had him at the doctor's office when it opened. My intentions were to get Jaycee on the preventative dose of Tamiflu, since he did have the virus. On the drive home from the doctor, my father-in-law called to say that Jaycee's breathing was strange. I was home in a flash, and she was struggling. He had started her emergency medications before I got home, but they weren't helping. I threw on her oxygen and transported her to the emergency room. She spent the next 7 days in the hospital on oxygen, cough assist, and getting suctioned as the virus attacked her lungs. Not a fun week- let me tell you.

Here's what I want to say before the flu shot debate starts. If you don't want to get a flu shot, fine. I don't care. I probably wouldn't mess with it if it were not for my daughter. However, if you share an anti-vaccine article on social media, please make sure it is from a reputable source. If you feel it's good, then watch how you word your post. Sharing good information is helpful. I don't think it's wise to criticize others who choose to vaccinate. There are people like me who have a family member in fragile health who can't afford to take the chance.

While some sit and debate on what they should do for their family, I have no doubts. I hope everyone can make their own decisions on this topic and determine if they should share reasons why they are for or against vaccines in a helpful way.

Keeping My Sanity

When you have a child with complex medical or developmental needs, there are many, many more responsibilities for the mom. Over the years, there are things I have done to help maintain some order to the tasks and information that can seem overwhelming. Here's some things that help me:

1. An appointment book: This is the most obvious on my list. If your child has several appointments, a calendar or appointment book is a must. Don't waste brain space on days and times. Leave it to the book or electronic device.

2. A written health history: A few years ago, I decided I could no longer remember all of Jaycee's diagnoses, surgeries, and previous admission information. When we took Jaycee to the emergency room, it's hard to answer easy questions when you are under stress and no sleep. I would forget to tell the doctor she had Down syndrome and then they would gently ask me if she had a genetic condition. Whoops! Well, I remembered the asthma, obstructive sleep apnea, AV canal heart repair, and Wolff-Parkinson-White syndrome.

Jaycee is typically in the hospital for lung issues, so common questions are: when was your last admissions, how many times has she been in the ICU for breathing problems, and when was the last time she was in the hospital? When she was in the hospital once or twice, these were easy. Then it became hard. That's when I wrote up the health history that contains her diagnosis list, surgery list, and hospital admission date/diagnosis/and if she went to the ICU. I keep this saved on my computer and update it as needed. I keep a copy of it in my purse, so I always have it with me.

I have to admit that the first time I used this health history at the emergency room I felt strange. I didn't want to see compulsive. But the doctor remarked that other moms do this and the doctors like have an easy medical history to quickly read through.

3. A written medication list: When at appointments or filling out papers, I pull out Jaycee's written medicine list so I don't have to rely on my memory. When there were just 3 or 4 medicines, it was easier. But now, 9 medications when healthy and a few more when she's sick is just too many for me to remember. So, it's all on a nice chart that I carry in my purse.

4. Assigning tasks for a certain day: There are many extra tasks I have as Jaycee's caregiver, so I try to do certain things the same day of the week in order to help me remember. I clean Jaycee's foot braces on Friday afternoons. I clean her bi-pap parts, nebulizer masks, and aero chambers on Friday mornings. I check all of Jaycee's medications and get refills on Fridays. (Can you tell I'm off work on Friday?) I make sure Jaycee has her bath with bleach water, which kills the staph infection on her skin, on Monday or Tuesday night. I check her night diaper count on Thursdays. Anyway, you get the idea.

5. Keep a folder with records: I have a small folder I keep important medical reports and information in. At first, I kept everything. Now, I pretty much know if I really need something or not. My folder is pretty thin because I go through it regularly. There is the current school IEP, hearing tests, and the genetics yearly report in this folder. By keeping this information all together, I can access it easily.

6. File System for Medical Receipts: For tax purposes, I keep all medical related receipts. I started using a file folder system to make it easier at the end of the year when I add it all up. I put receipts into the categories: hospital related expenses, doctor/dentist co-pays, medications, medical equipment, hotel expenses, etc.

7. A Medicine Schedule/System: When Jaycee was younger, I had a book that I wrote down the times to give Jaycee medicine because she got several different medicines at 4 different times a day. The book helped me remember because I was suffering from sleep deprivation.

Currently, I give Jaycee medications only twice a day, so I don't need to keep a written log. However, I do lay out all of the medications in a different spot before I start administering. By placing them in a different spot than where I store them, I can clearly see what is done and what needs to be done. Sometimes, you can't remember because it all blurs together, so this is how I keep it straight.

Whenever Jaycee is sick the medication times change and there are more medications to give, so I write the dosage schedule out to keep on track. Sometimes I use the dry-erase board. Sometimes, I use the paper. If we have to run out to the emergency room or go to the doctor, I take a photo of the dry-erase board or grab the paper so I will have all of the information with me.

8. Documenting Illnesses: Remember that appointment book? I document in it the day Jaycee started needed extra breathing treatments, the day she saw a doctor about a respiratory illness, and the day she started a steroid course or antibiotics course. Why? Jaycee sees several specialists who I regularly see for check ups who want this information. If she has back-to-back illnesses, I can clearly see when she was last on steroids or antibiotics.  So it might read: May 10: Local Dr, Steroids 5 days  

9. A Packing List: When Jaycee was younger, I wrote out a list of supplies I needed for travel with her and made several copies of it. I was so paranoid that I would forget her medicine or syringes or bed pads that the list helped decrease my anxiety about forgetting something. I no longer need that "master list" but I used it for several years.

There you have it-- some of the things I do to keep some order in this busy life.

A Photo of our board before an ER dash. Xopenex, Tylenol, and Motrin are some of the meds documented.

The Big Bad Flu

During every flu season, I always hear moms debating whether or not their child should receive the flu vaccine. I usually let the moms tell their reasons why they are for or against the vaccine. When they are done, I then chime in.

"Well, the flu nearly killed Jaycee. So, yes I always make sure my kids get the flu vaccine."

In 2011, Jaycee came down with the H1N1 flu virus. I didn't know she had this until we ended up at the emergency room. The flu virus somehow triggered a fast heart rate, which led to us discovering she had Wolff-Parkinson White syndrome. For that story, read my previous post. A helicopter from the Children's hospital came to get Jaycee since she was in such distress. She was admitted to the hospital.

The fact is that even though Jaycee received the flu vaccine, she ended up getting the flu. I guess you could look at this in 1 of 2 ways: 1. Maybe the vaccine doesn't work and isn't worth doing or 2. Maybe the flu can be very serious and the vaccine may decrease your chance of ending up in the emergency room and being admitted into the hospital.

For me, I look at it from the second perspective. It seems Jaycee catches illnesses easily, so I have gotten the vaccine for her, my son, and myself every year to help put the odds in our favor.

Last year, my son spiked a 104 fever and was obviously very sick. Our doctor told me to get to the hospital to have him swabbed to make sure he didn't have the flu. Sure enough, he had the flu virus even though he had received the flu vaccine. But, Jaycee and I didn't get it. I felt that was a miracle! Jaycee drinks from her brother's cup all the time, so I was sure she'd come down with it. Elijah and my husband were both laid out for a few days with the flu. But the girls stayed strong!

So after having the flu affect people in my home in two different flu seasons, I know how harsh and serious the flu can get. I know I never want someone in my family to get it. And I'm always relieved when the flu season is over!

Wolff-Parkinson-White Syndrome: 1 year later

Last year a friend of mine warned about not sharing your testimony until your test is over. A few days from now marks the 1 year anniversary of Jaycee's heart ablation that "fixed" her Wolff-Parkinson-White syndrome (WPW). With that test over, here's the story:

It started in January 2011. Jaycee was home sick from school with her daddy. One of my clients wasn't home so I went home to eat lunch. I checked on Jaycee. She looked horrible and was acting strange. She was laying on her bed trying to fall asleep at 11 am. This was not typical! She was really pale. Thinking she was having an asthma issue, I hooked her up to her oxygen saturation machine. Her heart rate was 230. I thought it was broken or not reading right because that number was unbelievable. Jason and I checked her over and determined it was working and things were not good. 

We found ourselves in our local ER. I believe every doctor that worked there was in our room. I realized that it was suddenly very serious when they brought the crash cart in. Because Jaycee doesn't speak, I had no idea how long she had been in the fast heart rate they called a tachycardia. Phone calls to St Louis Children's hospital were made. A helicopter was in route. Medicine was given to stop the tachycardia. The first dose did nothing. The people in the room looked nervous. I thought "God is this how it's going to end." I was in shock. The bad part is that I sent my husband home to pack our suitcase. When he left, we didn't know it was that bad. We just wanted to be ready when the helicopter got there.

Another dose of medicine was given. Her heart rate immediately dropped too low and I remember the groans from everyone as we stared at the numbers. But as fast as it dropped, it came back up to 180. This was fast but acceptable. The crisis was over. I sat in a chair and did everything I could to keep my lunch in my stomach.

The next day at Children's we were told this was a rare, isolated event that probably would never happen again. We were confused but glad to hear that it was just a once in a lifetime thing.

A few weeks later, we saw her regular cardiologist though. After reviewing all the tests, he told us the alarming news that Jaycee had WPW. She had an extra electrical pathway in her heart. When it fired, her heart would do the same thing. It may be 2 weeks or 10 years before it fired again but it would happen. Her age of onset and tachycardia was unique. But the bombshell was that there is a risk of sudden death with WPW.

We have gotten a lot of bad news with Jaycee over the years but that was shocking. I cried and cried some more. Fear tried to creep in. I understood that the possibility of her dieing from it was small but it was still there. Every time I left her, there was that nagging thought that started with "What if...." It was a challenging time. If I would have listened to my fears, I would have quit my job and stayed with her 24 hours a day. I tried my hardest to stay positive and not worry. But I knew it was affecting me. I could tell it the most at work. I would be in a session and find myself struggling to keep my mind focused on what I was doing. I felt like a crummy therapist then.

Four months with this diagnosis felt like an eternity. We arrived at the hospital for her heart ablation that would "fix" her WPW. The doctors did their jobs. They were confident they got it and she was fine now. There is a small percentage of kids whose WPW heals itself and comes back. If we made it a year, we were good forever. I felt so relieved to have it over. I was relaxed for the first time in months. I figured she was fine.

A month after the ablation, we saw the cardiologist for her follow up testing. When he walked in our room and shut the door, we knew the cardiologist had bad news. Sure enough, she was in the small percentage of kids whose WPW came back. We had to wait a few months before doing another ablation. The waiting and wondering would have to continue.

August couldn't come fast enough. The ablation was repeated. The electrical cardiologist assured us that this time it was over. I was relieved again. The tension that had built for about 7 months was finally over. I can't fully describe how WPW affected our lives during that time. We tried to avoid sick people to keep her healthy for her ablations. We tried to avoid things that would increase her heart rate like carnival rides. That meant we didn't go to our usual state and county fairs. The emotional toll on me was indescribable. There was constantly a battle between having faith that things would be ok and being fearful of something that might happen.

It's been a year later; I can say that 2011 was the most difficult year we have had with Jaycee. (There were other things beside the WPW.) But we made it. It's one of those situations you find yourself in when you must rely on God to get through the minutes and days. So, here's to Jaycee's heart health for a year!