Thursday, April 16, 2015

The Hospital, our Easter, and the medically complex child

We were recently admitted into the hospital, breaking a streak of over 2 years of remaining hospital free. Yes, we had an ER visit in there, but were released with a home plan. We made the tough choice to take Braden out ONLY for the Special Needs Easter Eggstravaganza & Expo, and that this year we would forgo his presence at an Easter service. Well, he was fighting a urinary tract infection, but we didn't see that as enough of a reason to keep him home. Yes, it was also only in the 50-degree temp range, but most activities would be inside. So we took him.

Two years ago I heard they had a balloon room, which we didn't know about until after the event. I was sad we didn't give him that experience. Last year, the balloons were popping frequently enough, I was afraid it would set off a seizure, so we didn't go. I was BOUND AND DETERMINED to make this balloon room a reality for Braden. Since I served on the committee to plan the event, I made sure we ordered punching balloons - stronger and less likely to pop than regular balloons. So we FINALLY get to take him, and well, he slept the whole time. I was disappointed after the 3 year build-up, that he didn't REALLY get to experience it the way I wanted him to.

Then we decided to get our bunny picture before the lines got long, and it was still sub-60 degrees outside. So we rushed, and got it done. He was sleeping, again.

We got him back inside for the one thing we ALWAYS do for him - a professional haircut. He was awake for a good part of this experience. Really? This would be one to sleep through and enjoy... but that's our Braden. And it took 3 people to cut his hair - too funny!

Then we let his nurse and therapist take him to some booths - he got his face painted, and started doing some crafts. But it was short-lived and his heart rate started dropping too low, and he was getting too cold. So after ONE HOUR at this event, Braden had to go home. This was the sum total of our FAMILY Easter experience. And then... by Sunday night and the wee hours of Monday morning, we were in the ER, before being admitted to the hospital with Braden. The ONLY thing they could figure out with him was a positive FLU test. So remember my little post about how the little things to your kid that can mean they don't feel well for a few days, can have more dire consequences for us?

I had posted and discussed at length on Facebook after this article, to support the thoughts and realities for us. Click here for the post:

This is one of those times. The UTI, paired with exposure to cold weather, and exposure to many germs in a crowd after ONE HOUR and minimal interaction meant the FLU put him in the hospital. And not only that, because he is complex, the doctors for days could not agree on why he had certain symptoms that ultimately could not be figured out nor explained.

I hope this offers parents whose children wore their adorable little outfits and misbehaved and got chocolate on them or popsicles at least take a moment to appreciate that they got to actually wear the outfits mom and dad bought, they got a family photo of some kind, and that Easter was spent together as a family... because none of that happened for us. I'm not sharing this because I'm upset or angry - just offering perspective. Please don't take those moments for granted, because medically complex families may never get to experience them - the cost is just too high.

So I wanted to share with you this post that I thought was extremely well-written about life as a parent of a medically complex child. If you have an extra 3-minutes, please read it. It offers tremendous insight as to what life is like for us.I recently read this post on another blog, and I thought about just how much it describes our life. I've tried to describe what it means to be the parent of a medically complex child, why we have to make overprotective choices, and why we never ever really get to "relax."


God bless you for keeping us in your prayers, offering notes of support and encouragement, bringing us meals, and just doing other things to help us out. We love you for that. We NEED you for that. Thank you for not waiting for us to ask you for help, and just doing something for us. It is hard to ask, or know WHO could help at times, so honestly, the JUST DOING is appreciated more than I could express. Telling us you are coming over with a meal and when can you be at our house or at the hospital - we just love you so much we could never express it with enough gratitude. Telling us you are picking up the mail, cutting the yard, coming to clean, do laundry or dishes... you are so appreciated. For those far away who send beautiful cards and notes of encouragement - you are such a valuable piece to our support team, and your emotional support is needed an appreciated. All these ways of showing us your love - they get far more mileage than the time you took to invest in that simple act of kindness - they are the memories and support we need in our weak moments. They are the vote of confidence we need to know that we CAN do this, even if we haven't slept in 2 straight weeks again.

For those of you NEW to our story, here are some posts that offer a snapshot of a day in our life:
And oh... the medical billing:
And the other stuff too to round out this PICTURE of our life:

So Braden will turn 9 this month. Our little SUPERHERO will celebrate in BIG STYLE with friends and family. We can't wait to share the pictures!! Thank you GOD for giving us NINE years!!!!

Love to all,
Kodi, Brad & Braden