From perfect to problems

from July 9 – discharged from TCH

She was perfect. 

Well, technically, I think she is pretty perfect all the time, but she was perfect in her heart.  Her breathing was better. Her stamina, attitude, and color were better. She was doing so well.

Then there were problems. 

First, we noticed the number of breaths. At rest, she was breathing faster than our overweight, old Labrador after running circles outside. Problem #1. Then, we noticed she became out of breath after moderate activity. What once was an awesome new ability was now holding her back again. Problem #2. After that, came the cough. No drainage, just cough. And most of the time it was after being out of breath.  Problem #3.  Hiccups followed shortly. I know what you are thinking – hiccups?  We get those all the time. Well, Reiss doesn’t. And when coupled with Problems #1 through #3, this Problem #4 points to heart failure. 

We knew this was serious when our cardiologist called our pediatrician himself to request an appointment for Reiss. She had an X-ray and blood work. The X-ray came back showing a minuscule amount of fluid on her lungs. The pediatrician and the radiologist said it could be a virus.

Really? A virus?  I had to kindly decline that explanation. I know what a virus is and I know my child. It’s not a virus. We have had the diagnosis of “this is probably just a virus” in previous pre-surgery situations with similar symptoms and those diagnoses were incorrect. So, no.  

Thankfully, I didn’t have to pry further after one blood test came back as abnormal. Her BNP levels were outrageous, pointing to heart failure. 

But she looks so good. How could she be in heart failure? My mom actually asked this to the doctor. He said this is how it happens. It doesn’t look like an issue until it becomes an urgent situation

Our cardiologist in Springfield got in touch with Texas Childrens and made sure they had all the information they needed. They agreed she should be hospitalized. The cardiologist said it was a good thing we were cognizant of our child’s norms and changes in her condition.  This is just how we are – watching her every move. 

With the amount of distractions in life, it is easy to not see what is really going on with your children – from eating disorders to heart disease, emotional needs to mental health issues, problems with school to negative outbursts of emotion, we have to pay attention. And not just pay attention – question what you think you know to be true. Not in a cynical way, but by being more inquisitive and self-aware enough to be able to look at yourself and think – am I looking at this from the right angle? Are my words forming properly to get the answers I need? Am I truly understanding? Is my child getting what he/she needs from me?

We pay attention. We aren’t perfect, but we try.  This time, our trying paid off. So, here we are. From perfect, straight to problems. 

We pray the problems aren’t as bad as they could be – that we may be in the hospital for a while (no idea on the definition of “for a while”), but not need any further surgical intervention. 

6 thoughts on “From perfect to problems

  1. We (our 3 year old daughter & 3 1/2 month old son) pray for Reiss every single night. God Bless you and be with you all. ❤️

  2. Prayers for Reiss and your family to be strong always. So sorry to hear of these further complications but so glad you’re ‘aware’ and areare catching it, as you said. Hugs Sara…

  3. Prayers for this precious child that God will watch over her & the family. God give them strength,love,& ability to deal with whatever is in store for this beautiful child. Amen

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