Real Life

"Real Life.  Messy. 
What it means depends on how you look at it.
The only thing you've got to do is

Patrick Ness- More Than This

All. Day. Long.  I've had to consciously look at things differently. 

At 11:15 this morning (Wednesday), it was September 10, 2002 in my mind, with a clarity and urgency I have never experienced before.  In the very same hospital, fear paralyzed me, my legs gave way and I fell into the wall and slid to the floor in a puddle of frantic tears. On the other side of that door,  my little 9 year old, with red on the head, seized uncontrollably.  He was undergoing a spinal tap and all I could think was that it was the beginning of the end for him. 

What followed was a life flight trip to Boise and 5 weeks in the hospital. 

Today, Shelbie was on the other side of the door, undergoing a spinal tap for suspected Meningitis.  It was surprising how fast it all happened.  Her doctor appointment was at 10:20 and by 10:40, we were on our way to the hospital.  At 10:50, Shelbie lost most of her vision and her ability to walk very well.  

As they wheeled her down for the procedure, tears streamed down her face and in a quiet whisper and tight hold on my hand, she said, "Please mom!! Please promise me I won't die.  Please don't let me die." I promised her, I kissed her and the door closed.

I stood alone in the long hall leading to Radiology.  Completely alone.  No one was coming or going or had places to be.  It took all I had to hold it together.  I had been texting Sam to let him know where we were.  His shift ended at noon and he came right up to the hospital.  The automatic doors at the far end of the hallway opened and I saw him in the distance.  I ran to him. I wanted to be brave but I fell apart.  He grabbed me and hugged me..."Hey mom!  She's going to be okay.  You've got this.  We'll get through this."  I was so grateful for him and his words were enough to get me through that moment as I shifted from 2002 to 2018.  

Shelbie is in better shape than Spencer ever was and that is hopeful. 

Finishing up the Spinal Tap

We got word early this evening that the meningitis is viral but they hadn't yet determined the underlying cause.  It is expected that they will have that sorted out in the morning.  It's a crap shoot which one is 'better', bacterial or viral.  In my mind, bacterial can be treated with antibiotics.  In viral, your immune system is on it's own and Shelbie just doesn't have an immune system to speak of.  

She ran into so many problems late this afternoon and evening with medications and getting on top of the pain. She had a pretty rough allergic reaction to what they decided was Ampicilin.  In addition to three different IV antibiotics, they have added throughout the evening, IV steroids for the inflammation in her spine and brain, and IV Benedryl. 

Finally, close to 11pm, she is comfortable and even talking like her old healthy self.  The pain is well controlled with a morphine pump now, her swelling is down significantly and she is resting.  My Home teacher was so kind to come right up after work to give her a blessing and I think that made all the difference in how we both handled the rest of the night.  Our Bishop and his wife came up shortly after our Home teacher.  It was helpful keep our perspective in the moment.

Tuesday night, before we went to the ER, her head was so squishy.  It felt like 1/4" of fluid on it and it dented in when I pressed on it.  I wish now, I had of mentioned that to the ER doc but Meningitis wasn't even on my radar. I don't know why. 

Anyways, we will be here at least three days.  

Our doctor has been absolutely amazing in every way!  I've never experienced him in a crisis like this but he has been so patient and so thoughtful. He's researched, asked questions, listened and more than anything has been so gentle and compassionate....Everything a good doctor should be.  He has been able to visit with our Oncologist and our Immunologist and they gave him their blessing for the way things are being handled here.  The nurses are top notch.  My kids are incredibly complicated and her underlying issues create a precarious situation. 

Tonight, I'm finally seeing some significant improvement and I am hopeful this trend will continue.  I know prayers and combined Faith as well as capable doctors and nurses have all been for our good. 

This afternoon, Sam went to see our doctor about why he is looking so terrible and feeling worse.  He was working this morning when I took Shelbie but while I was there with Shelbie, I was able to talk about my concerns for Sam and brief him on the issues.  Another reason he's such a great doctor. 

I was right, Sam's bilirubin is elevated which explains his yellowish eyes. He needs to start another antibiotic because the Vancomycin hasn't quite finished getting rid of the C-diff.  I will try to break away tomorrow to pick that up.  His blood pressure is still creeping up but now his creatinine is too low.  I don't understand why his kidneys and liver are struggling so much.  My first call will be with the Immunologist and then the Nephrologist.  Spencer is scheduled to see the Liver doc next week so I may see if I can swap kids and take Sam instead.  He also sees his cardiologist next week and we will look into the enlarging left side of his heart and see if that is now causing problems. 

Ya know...this is tough.  I don't understand why things are happening the way they are. I'm trying so hard to look at this with the right perspective but that takes work!  It's the hardest thing in the world to watch the suffering of my kids and be completely helpless and make promises I know I can't keep because I can't keep them alive anymore.  They are totally immersed in the hands of God and all I can do is let them go and stop aggravating His plan for them.  That is both a hopeful yet terrifying feeling.  Why is that, I wonder?   The God who created the universe, who knows each of us by name, who works miracles, has never let me down, so hard to trust at times. 

In some small way, between the bursts of anxiety and despair, I feel calm, almost detached, as I watch this unfold.  I have a very strong feeling that this episode of meningitis is not some random, bad luck event but rather, meant for a higher purpose and I am watching closely to see what God is doing with this and how it will lead us along. 

Ahhh, for some good news.  Spencer got a hair cut today!  Thank goodness for answered prayers! He looks like my clean cut boy again.  He was trying to grow out his beautiful, curly hair but I think he has been so sick his hair is in terrible shape.  Not only that but he was hired by Madilyn Paige a vocalist from The Voice to shoot a music video for her a week ago.   She loved working with him so much, she hired him to shoot another one today.  It's a song she wrote called, United and the video will debut in China in two days as she kicks off a tour there, tomorrow. if it couldn't get any better.  He went on a date tonight!  It felt like a breath of fresh air to actually hear some happiness in Spencer's voice that for the first time in forever, he is experiencing some success in life instead of just being sick and unemployed. 

He has a big project coming up next week that he is 100% in charge of and he said, "K, Mom!  I really need your faith and prayers.  This could be my big break but I can't do it without some serious prayers." 

"Seriously Spencer?  Perhaps you have forgotten that the opposite of everything I pray for happens.  Are you sure you want me involved in this?  Maybe just ask your Atheist friends, I bet God will be so excited to hear from them, you'll actually get somewhere."  Just kidding.  I didn't say that but I sure thought that. 

Okay...well enough of today's messy day...I am so excited to see what's coming tomorrow I don't think I'll be able to even sleep.  


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