Because I can

I ran 125 miles in the month of August.  That's the most miles I have ever run in a month.

I'd like to celebrate. And one day I might.

But my heart is heavy.

This has been a hard week for Maddie.

(Of course it's been a hard week, the first week of school each year is hard. With two-a-days, she starts the year worn out and it's downhill from there!)

First day of School

Nonetheless, four days into the school year, Maddie's kidney has flared along with her asthma and she is one sick girl.

Friday morning I took her to the hospital for blood work between a pep rally and an Algebra 2 quiz. Her urine is brown. She made it all day at school, reported for practice on time and performed at the football game.  Want to see her performance?  Click here!

Immediately after the performance I took her home.  Since 9pm Friday night she has been in bed. It is now 9pm Monday.

The only other time she has been out of the house was at 11pm on Saturday night when I took her to the emergency room. Her asthma was out of control and we needed help.

Since the hospital visit she has been on breathing treatments every 3-4 hours along with a heavy dose of steroids. I'd like to think that she could start weaning herself from these soon, but given that she can't even walk across the house without getting winded, we shall see.

She would also like to go to school tomorrow.

So in the midst of Maddie's crisis, I am running longer and stronger than I ever have.  I can feel myself getting leaner and faster.

And it hurts. Cause Maddie can't run.

We are even selling her treadmill.

She wanted to run, but her body can't. We know longer want the reminder.

It's times like these that are hard. I have to remind myself that it's okay to get down. It's okay to eat the donut for breakfast on occasion cause your child is sick and there is NOTHING YOU CAN DO ABOUT IT. But I can't and won't go back to the daily donuts and being 40+ pounds over weight.

Instead, I am going to get up at 4:15am and run.

Because I can.

The difference between chronic and acute.. the difference is frightening.

I've waited a few days to share this story. I've waited for my nerves to calm. I've waited to make sure that Maddie is okay. I've waited... because I am thankful that I have a story with a happy ending to share.

Disclaimer...
If you have read my blog regularly over the years you know that Maddie has health issues. I know that I share more of these issues with the public than she would prefer. But I do so for a reason.  Because even though there are days when I feel like we are alone, I know that we are not. So, I know that in the future, some person might stumble upon a post of mine and get the reassurance that they desperately need at that moment.

Anyway..

In Maddie's life we have had a few acute health scares. Not many thankfully. We live in the world of chronic health problems and to be honest, have gotten pretty comfortable dealing with these ever present nagging problems.

But we are not novices to acute. When Maddie was 5 months old, she had a severe allergic reaction to penicillin called Erythema Multiforme. She was so swollen that she struggled to breathe. It took weeks and lots and lots of medicines for her to recover. I think it was at this point she got her first nebulizer.

This picture shows her looking better. It was a very scary time.

I won't belabor the point with more horror stories. Let's just say we have had them.

Moving forward.

This summer has not been kind to Maddie. She had to cancel an overnight party with friends for a late birthday party becuase she was sick and then she had a bad asthma flare July 1st. Looking back, I should have been more aggressive, but we have gotten complacent. We have an incredible doctor and lots of instructions.. so I didn't call for help. I figured we could handle it.

So Maddie spent a couple of weeks not feeling well and then was able to go with my mom and her cousin to my sister's house for some time at "Ma Camp." Nothing too strenuous. The biggest thing for these girls is that they don't have their younger siblings there with them! So after four nights away from home I went and retrieved Maddie from my sister's house and immediately noticed a cough. A similar cough to the one that Maddie has for most of the year. Nothing new.

That night, Friday night, before bed Maddie took a breathing treatment and went to bed. As you might remember, that was the night my Grandmother died. Saturday morning, I got up early and went and ran with my running buddies. Doug left the house as I was coming in to play golf. Maddie was still in bed. Later that morning, Maddie finally came out of her room and I could tell something was wrong. She was in tears and struggling to catch her breath. I asked her to do a peak flow and she could not force enough air out to get a reading.  I immediately had her do a clearout (3 breathing treatments back to back to back). After the clearout she was a little better and I asked her if she needed to go to the hospital. She said no, that it was getting better. She was able to do a peak flow and it registered her into the low yellow zone. This started a cycle of breathing treatments every 3 hours. Maddie stayed in bed the rest of the day. I checked on her, but pretty much went about the day with the girls. Cause man, we've done this before.

Doug came in mid afternoon and we discussed calling the doctor, but we were doing the protocol, so we didn't see a real need to call the on-call doctor.

Later that evening, Doug asked me if Maddie told me about what had happened during the night. I said no. So he told me what she had just told him and then I went and found Maddie and got the story from her.

Take a deep breath and remember that she is okay..

As it turns out... about an hour after Maddie took her breathing treatment Friday night and went to sleep, she woke up with her chest burning.

She was cold and felt like she had a fever.

She was unable to take a deep breath.

Her muscles were clenched tightly and she couldn't reach down to pull her blanket up.

She couldn't roll over.

She couldn't reach out and get her phone off her bookcase.

She couldn't call out for help. 

So she laid there until she went back to sleep.

Oh my.. at this point I am ready to wail.

My heart does stop a second when I think of the might of's and the almost's.

I think it has been even more so these last couple of days as we attended my Grandmother's visitation and funeral.

When I found out what had happened, we talked about what we could do in the future. She now sleeps with her phone in her bed. We talked about how we should have gone straight to the hospital when was able to call for help. We looked over the paperwork and I talked her through what the emergency protocol is and what that means.

Lesson for parents with kids with chronic un-fixable problems.... Maddie asked what they could do for her at the hospital  Wow. She lives in the world of kidney disease and auto-immune problems where treating symptoms is the only thing they can do and where stopping the problem isn't an option. She didn't see going to the hospital as something that could help her to breathe. ouch.

Today we went to the specialist office. The staff was as bothered as I was that we didn't have any health warning/symptoms that were different. Lots of questions were asked and answered. In the end.. this is what we were told. "you know how people say they are having an asthma attack.. most often they are having an escalation of problems, a flare... you had an acute attack."  Even worse, going over the last month, it was apparent that the attack on July 1st was acute too.  It was suggested that we find a way to have her rescue inhaler with her, in her bed so that if needed she can get a puff and have the ability to call for help.

So I'll be making a cute little over the headboard inhaler and phone keeper for her!

It's been a few days now and I've stopped going into her room repeatedly during the night, but I can't help but want to go sleep in her room and hold her a little closer.

no lakehouse trip for us this year

We are supposed to be at the lakehouse this week. Remember?

My side of the family goes to the lakehouse for a redneck time of it during the week of July 4th. I've blogged about it in 2012, and 2009. The girls and I should have left Wednesday morning... but Maddie woke up Tuesday in a bad asthma attack. She couldn't talk for HOURS because it was so bad.  I am very, very thankful that we have written instructions and specific guidelines for treating an asthma flare. But this meant that we were looking at the next couple of days of breathing treatments every 4 hours and then beginning a taper IF she was better.

So... Tuesday evening I met my sister Libby in a parking lot about an hour away from our house and handed off Lexi so that at least Lexi got to go to the lakehouse. Sending my child to the lakehouse without me was scary.  I'm not good at the letting go part of parenting. But I guess this can count as Lexi's "summer camp" experience!

As of today, Maddie still has a wet cough and needs breathing treatments at least every 4 hours. Thankfully her peak flow is back up, but that's on the every 4 hour treatments. So I guess I'll call the doctor tomorrow.

Obviously the lakehouse is out for us this year. 5 families in a 3 bedroom + bunkroom 2 bath house just doesn't sound like the place Maddie needs to be right now.

I promised her that our little family would do something "lakehouse-ish" this summer.

Great. Do you know how many times I have said we would do something that I never planned to do because I am so sad that Maddie has missed out on yet another event!

I hate Asthma.

My poor Maddie has asthma.  Most of the time it's controlled by daily medications.

Well, 11 days ago, Maddie had an asthma flare.

Her peak flow (which is breathing into a little tube and seeing how hard/far you can make the line move) was less than half of what it is when she is well. That meant she was in the Red Zone. The bad, take this medicine and call the doctor zone. 

So we started doing (and have been doing) breathing treatments every four hours and taking all kinds of extra medications to help her breathing. We've driven two hours one way to see the doctor. TWICE.

And still today, she's no better.

I hate this.

There is nothing else that I can do, but it is so frustrating to watch your child suffer. Day after day, and not have anything you can offer, but to rub her back.

So, if you are a prayer person, say a prayer for Maddie. She could use a lift.