Tag Archives: what if

How to Survive the Germiest Season of All

***I am not an expert of any kind (even if I wish I were and even if my kids think I am) so please use this advice in any way that you feel comfortable. This is just based on my own personal experience and research. As always, consult your doctor(s) and local government for more information.***Image

Fall, winter, even spring. We can even throw summer in there. But out of all of these seasons we all know that fall and winter are the germiest months because of cold and flu viruses and stomach bugs like the monster Norovirus. They’re all lingering around more than any other months. Or so it seems at least.

Let me get this out there- I am a germaphobe and I’m fine with that. It all started since the day we got The Queen’s diagnosis. Call it what you will, but even if it’s an anxiety-induced reaction to such a disheartening diagnosis, I will definitely embrace my germaphobeness because it’s what helps keep Natalie healthy.

I’ll also get this out there- I have a strong phobia called “emetophobia” and this I’m not that fine with. It’s hard to handle especially during these fall and winter months, especially with tales of stomach bugs cropping up almost daily and in all parts of the world up and down my Facebook newsfeed. The first feeling I get is worry for the one dealing with it. The second feeling is dread: the feeling that I just know that my own child will get it really soon. Here’s what’s really strange, I can clean it up but do NOT let me catch it. I will myself to never throw up and I take pride in having 6 1/2 years of not doing it. Even if it hurts more to not do it. I would actually prefer to have a broken bone, a really bad cold, or go through a long labor again to ever throw up. How crazy is that? Purdy crazy.

But it’s my phobias that cause me to research and listen for stories and information about how to avoid getting sick..well, at least not that often. We all do not have to be sick every week if we don’t need to. Trust me, I’ve partially thrown in the towel this school year. I have Natalie and her brother in full time elementary school. Chances are, almost every germ in this house comes from them. Chances are, our family will get sick no matter what. And I’m actually fine with that. We have to let the immune system do what it needs to do. I was born in 1978, had chickenpox, the flu almost yearly, oh so many bad colds, and so many stomach bugs that I lost count by middle school age. And I survived! But what’s scary for me is that I know very well that health-compromised kiddos like Natalie get hit harder, longer, and faster with every germ that enters their bodies. If I can take away an extra cold or stomach bug away from her every year then my hard work is always worth it. So next to getting your yearly flu shot (you better get it!):

TOP 10 LIST OF THINGS YOU SHOULD DO (or at least maybe consider because for realz)

10.) Wash wash wash those dirty hands! Anytime you come home from work, the playground, school, from even just checking the mail you should be washing those hands. We live in an apartment building with a shared front door. Everyone, even those with hands so dirty their fingernails are black, touch those doors. Not everyone washes their hands after wiping their butt. But nonetheless, washing your hands with warm soapy water for 20 seconds is not only the best defense against illness, it’s one of the only ones that actually work.

9.) Change school clothes when your kiddos come home. Sometimes I let the kids keep on whatever they’re wearing. So yes, I do slack sometimes. But if they sat and laid around the school’s sandbox that day, change those nasty clothes! Also, an uncovered, ignored sandbox? Gross.

8.) Clean your cell phone! I have to confess, I’m pretty sure I broke my phone by doing it too much so as soon as I find a safe way to disinfect a phone (or if you know a way comment). I usually wipe it with a Lysol wipe, but I’m pretty sure my iPhone hates me for that. One thing you can do if you don’t feel comfortable cleaning your phone, is just wash your hands after using it. And have your kids do that also. Especially after having overloaded your phone with Angry Birds and many other apps.

7.) Keep those hands off of your eyes, nose, and mouth unless you’ve washed your hands. If you must pick your nose, use a tissue (hear that kids?). If you eat a meal wash those hands beforehand! And cover that nasty cough in the crook of your arm! I’ve lost count how many times my kids coughed in my mouth. Directly.into.my.mouth.

6.) Take a good look at your bathroom and kitchen. Really look hard. See what I’m seeing? Every few days or so, with a diluted bleach and water solution, disinfect your sinks and toilet. That includes the handles (toilet handle too)! If you have to use a hand towel make sure you have a spot for it to dry and wash the hand towel at least every few days. I started using paper towels this year and that helps. You can even turn the sink off with your paper towel- cutting down on  germs. Also, keep your toothbrush away from the hand soap. For some reason, our soap pump keeps ending up RIGHT next to our toothbrushes (water splatter YUM). And if you can, deep clean your bathroom as often as you see fit. In the summer months I deep clean monthly. During the winter months I deep clean it every 2-3 weeks. Think about it- the bathroom is an awesome haven for all germs. Not to freak you out or anything.

5.) Learn to love bleach. Point blank. Plus, it’s the only thing that kills Norovirus. The.only.thing. I like Lysol and really only use it once in a while. Plus, Lysol wipes  and Clorox wipes do NOT kill many gastro bugs. Sad isn’t it? Bleach my friends.

4.) Don’t overdo it with the hand sanitizer. You end up killing tons of good germs on your hands and just smearing the bad ones all over. Hand sanitizers are really helpful in a pinch, but don’t rely on it constantly.

3.) Avoid buffets if you’re too squeamish like me. During these months I avoid eating food that’s shared by other people. I don’t care how snobby that makes me. I just don’t care. But come May, I’ll probably eat at the local Golden Corral again. I loves me some Golden Corral.

2.) Keep your fridge clean! Think about it- you touch a dirty cart handle at the grocery store or at WALLY WORLD, then you touch your groceries and stuff. Think about how many hands touched your yogurt cup or juice container. Plus, you sat your groceries on a checkout belt that even the mere thought of what’s lurking on those will definitely end my no puke streak. I’m not saying to go spray bleach on your gallon of milk..but just think about that milk handle, fridge handle, and stuff. Just be aware of what you’re touching.

1.) Get friendly with the “high” setting on the dryer. If it can kill bedbugs it can kill pretty much anything else stuck behind after washing.

I know that these tips don’t guarantee an illness free season but following some of these have proven to keep my family healthy. Ironically, we just got back from an 8-day vacation on the east coast and the idea of washing hands and using hand sanitizer pretty much went out the window by day 2. And so far, we’re all still healthy since being home for almost a week (KNOCK ON SOME WOOD). I don’t know everything, but I do know a little. Happy Holidays!

changes.

It’s been a full month of school for Natalie and she’s been doing fantastic. So fantastic that I have to document this. I am so excited to see what else she does. There have been some pretty incredible changes going on with Natalie.  She has gone through several years of physical therapy for gross motor issues but since she’s started school she has been running, even jumping! (she has never jumped off of say.. a step, since..well never) and picking up those knees like a champ! She keeps up with her big brother and classmates, too! She moves like a 5 year old now. The amount of changes in her physical abilities has skyrocketed in only a month of elementary school. There’s something about that new title of “kindergartner” that seems to be a big force for her. It was something that I never expected. I survived the first week with Natalie in school I threw all caution to the wind and sort of just let it go. I stopped worrying about her so much. I stopped comparing her to James. I stopped expecting something bad to happen. I stopped. Instead, I starting changing how my thought process was going with our new adventure…

She’s in good hands. 

Indeed this kid is. She’s in perfectly good capable hands. During her first month of school, she has endured a whole lot. And every incident, illness, and upset moment involved someone else to protect her. I won’t lie and say that a tiny part of me wanted to be there to take over the situation(s) instead. But if I keep doing that she’ll never grow up. She’ll never get to experience life away from mom’s shadow. A huge disservice to her if I immediately jump in every moment, bad or good.

For the first month of school Natalie has successfully (and supremely) handled a raging UTI (poor kid..oy), a punch to the chest by a fellow classmate, a classmate’s birthday party, a nasty cold (while taking her 1st major test of the year where she placed VERY high!!), and stomach virus. There are a few things more we can take from this..

Yes. Natalie has half of a heart and by technical standards, she is a little delicate under that skin. Her heart is without a right side, but the left side is so strong! It amazes me every single day how well she copes. I call this time of her post-Fontan life “the prime”. It really is the prime of her life in regards to how strong she really is. And I think that this prime time will last a long time. Is it okay to get a punch to the chest? Absolutely not. Thankfully, she took quite a blow but was completely fine. Phew. As a result, the parents were notified and it seems like this boy has calmed down. Kindergartners: I just don’t see how a teacher can handle 20 of ’em all at once.

2 days after the incident, I was walking Natalie to school on a nice cool morning, with James behind us. She says… “You know, my teacher told the class about my special heart. She told them to be careful with me and to never push or punch me. Then I showed them my scars.”

Luckily I was wearing sunglasses that morning to hide my tears behind them.

Totally out of the blue she tells me this. I told her how proud I was of her and I asked her how she felt about showing her scars and the teacher telling the whole class about her heart. “Pretty good” she says. Pretty good indeed Natalie. Since the incident with the chest punch, no one touches her unless it involves a hug, a tap on the head for “duck, duck, goose”, or hand holding.

Here are some more recent photos of the Queen with her brother and some very special friends at a Broncos game!! enjoy ; )

fenestration.

Natalie visits the pediatric cardiologist every 6 months still. Which is totally fine for this nervous mama. Not that I wouldn’t enjoy yearly visits at least a little bit, though! But for now every 6 months is where it’s at. It beats the bi-weekly (sometimes weekly) cardiac visits when she was an infant. We are in love with her doctor. The staff is pretty awesome and her doctor is even more awesome if that is possible. They know Natalie and in her eyes, anyone that covers her in free princess stickers is a winner.

Currently Natalie’s heart function is exactly where it should be at. Her normal oxygen saturations are in the high 80s. 88% is a great number in the high elevations. It’s also great for still having a fenestration. As of today, Natalie is at her prime with the fenestration. We do get asked a lot if and when they’ll close it. I like when people ask about Natalie and where she’s at. It keeps my brain fresh. As my old boss used to tell me (when I would do something extra good at my job that day).. “it warms the cockles of my heart” when people ask me questions about my daughter. But yes, at some point Natalie will need that little “pop off point” to be closed as it will no longer serve a purpose. This little hole, almost like a manmade ASD, helps to keep Natalie’s heart pressures at a healthy level. As she continues to grow like a wild weed, we may notice her feeling more tired, have some cyanotic spells, and will show signs of something a little wrong. This is why her cardiac checkups are still every 6 months. It usually isn’t an overnight thing that happens. It’s gradual (thank goodness). But gradual could mean anything in the CHD world.. from days, weeks to a month or so. That’s when we’ll know that instead of the fenestration helping, it’ll actually be taking away oxygenated blood away from her and her big growing body will need it.

community and loss.

When the CHD community loses another fighter, the wave of shock and sadness never recedes fast enough to take a good deep breath until the next wave.

When I hear about another loss, it’s just as devastating at the first loss I ever heard about when I entered this community 5 years ago. It never gets easier. In fact, it gets more difficult to bare. The weight of sadness on the heart is too heavy to hold. It really does pull you down. I want so badly to hug these parents who experience these losses and it sucks so much that I can’t.

In our journey we haven’t yet met too many families in Colorado affected by CHDs. A few, but not many. And in our journey I have yet to meet a family who is affected by the loss because of it. I’m sure in some Freudian way I’m doing that on purpose, to avoid the pain or something. Because it will boil down to something that every parent of a CHD survivor hates to confront…

their child’s own mortality. It is awful to feel that fear because first of all, the most recent losses and every past loss has zero to do with how I feel. There’s the guilt of even daring to “go there” with your thoughts. How dare I even think about my own crap when there’s a parent shedding tears and enduring such excruciating pain? I don’t have the right.

But I’m human. We’re all human and we’re all in this shit together. Despite our own fears, worries, guilt, tears, and anxiety, we pull together.

I don’t tell Natalie about the losses.

She sees the beautiful photos of warriors who are still with us and are not on this earth. I don’t decipher the 2 for her. So while so many of us mourn, show our support and shed tears for the fallen,  the only thing I can do about it, once it hits home, is to hug my own warrior a little more and just keep appreciating every second with her. The smell of her hair, the dimples on her cheeks, and that wonderful belly laugh.

 

health plan.

When I met with the school nurse.. well..the district-wide nurse a few months ago I was so happy to get the elementary school prepared about Natalie. She’ll be the only child in her school with a severe CHD, let alone half of a heart, so I thought “yup, let’s do this”. Everyone is always really nice to talk to which makes this anxiety-filled mom feel at ease. When I first sat down with the nurse she immediately shows me all of the printouts she acquired about single ventricle hearts and Tricuspid Atresia. She confessed to have never met a child with a CHD like this and I told that definitely didn’t surprise me.

I spent an hour talking with the nurse and we drew up a really great health plan for Natalie. This plan stays within the school system and follows Natalie as she climbs up to each new grade. We can revisit the plan anytime and change things if needed. Plus, the principal, assistant principal, everyone at the school is made aware of the health plan. More easily put- every major official at the school is prepared. The nurse and I listed every single tiny thing we could in the health plan. I knew that a few weeks later we’d be seeing the cardiologist for Natalie’s 6 month heart check-up so I let the doc take a good look at it. She scanned the document for a good minute or so..”Looks great! I wouldn’t change a thing!” I thought I listed too much and she said that’s what she likes about it. The cardiologist gets a little worried when not enough is listed on these health plans for these CHD survivors.

Sorry for the bad copy. The school printer was on the fritz that day. But this gives you can idea of what’s included. We made sure to include things that would help identify what Natalie’s normals are and what’s definitely not normal. The school’s front office secretary confessed that she’s a little nervous. You see, she would be the first one to care for Natalie if she comes to the office. And she’s in charge of making parent phone calls. So I was warned that I may get several in the first month or so. This is why I’ll be taking online courses at home, only a few short blocks away.

Luckily, Natalie will have the same kindergarten teacher that her big brother had. She is very comfortable with Natalie and is well aware of her “special heart”. I think that’s what’s going to make it or break it. I don’t think it will break it.

I found out that same day of planning this with the nurse, a 7th grader in the local middle school and their parents just completed their health plan. Want to know what the disability was?

Tricuspid Atresia.

Yup! So maybe it’s not as uncommon as I thought. Crazy isn’t it?

No guarantees. No certainties.

The future of any child is uncertain. My future is uncertain. Your future is uncertain. In life, as we all know, there are zero certainties and guarantees, except for one: we all float away into the big blue sky someday. You enjoy what you have for as long as you can. You take what you can get. You can get as close to certain as possible. At least in our family’s experience, we don’t know the meaning of certainty too well, and Natalie’s prognosis is only scratching the surface. We know what “for a long while” means. Maybe that’s the only close to certain thing we know.

When you have a child diagnosed with such a severe illness, the first thing you fear thinking about is what’s going to happen to them as they grow up. Over the past 5 years we’ve handed over our desire to control Natalie’s condition. We have learned to just leave the chips as they lay.

Natalie has reached the age of talking about what she wants to be when she grows up. That’s when you are forced to really face the big uncertainties and the big what ifs. Or at least you feel a little forced because like with every child, heart healthy or not, you want the best for them. You want to say “yes absolutely, you can do that”. But even with my six year old son who’s totally healthy, I can say “yes absolutely, you can do that” but how do I know that it becomes 100% guaranteed. The same with Natalie. She has been really interested in watching NY Med with me. When she comes into the room I always warn her with “this part’s going to be really bloody.. are you sure?” And when I try to cover the computer screen she gets really upset. She wants to see the heart surgeries, the bloody aortic surgery scene, and the gun shot wounds. While I sit there and get a little queasy, she smiles with her green eyes completely wide open. She waits for the next scene with something bloody going on and asks me all sorts of questions. She tells me that she wants to be a heart surgeon or a nurse. I tell her, “heck yeah!”

We’ve caught Natalie reading her daddy’s Anatomy books before. Well “reading”,  because she really likes the pictures. Some of those illustrations are very realistic looking. She tells me that’s what she likes about it.

Does this make it certain that Natalie will become the next heart surgeon or veterinarian? Obviously not. I do wonder if Natalie is really into the whole medical thing because she’s meant to be or is it because she knows that she’s had surgeries and it’s sort of like putting missing pieces of a puzzle together?

None of us know and not even Natalie.

While her future is uncertain we do know that Natalie is a very determined little girl. She has already sailed through her 5 years of life with incredible strength and determination. More than all of my 33 years put together. No matter what she does, Natalie will get it done. I guess you could say that it is a guarantee that Natalie will fight to the end. Whenever that is.

She’s also stubborn enough to be a surgeon.