Sunday, January 19, 2020

So how is Max?


I did this to myself.  I spent all of Saturday, December 28th doing nothing.  Todd hung out with Max and Ellie hung out with a friend so that I could spend the full day putting together a 1,000 piece puzzle.  It was incredible.  Then, I did the unthinkable – I got cocky and posted about my relaxing day on Instagram. 

So really, it should have come as no surprise when Sunday evening Max threw up enough blood to make our kitchen look like a triple homicide.  In that moment, surrounded by that much blood, what can you do but call your Mom and just say “I need you to come over.”  I’m not sure Todd and I even talked about it, we just immediately started packing for a hospital stay. 

One quick side bar – while Todd and I packed and my Mom helped clean up Max, my Dad cleaned up the kitchen and I gotta say that if you do happen to commit a triple homicide and need someone to clean it up, Greg Garbe might just be your guy.  Five stars.  Would recommend. 

When we got to the hospital, just as the nurses started to question exactly how much blood he had thrown up (I said a lot – I meant A LOT), Max promptly threw up another large amount of blood helping to jump start the level of care we received.  Bless his continued sense of timing. 



When we initially talked to the doctors, we assumed that the bleeding was due to an inflammation of the ulcer Max had suffered from a few months ago.  Despite all the blood, Max seemed to have bounced back fairly quickly.  He was a bit pale and seemed to have some lingering stomach pains, but was otherwise acting normally so we didn’t overly worry.  When we had been hospitalized for his prior ulcer, we had decided not to do an endoscopy since the medicine seemed to have alleviated any symptoms, but we knew with this additional episode it would absolutely be necessary.  What we weren’t expecting were the results.

The endoscopy showed that Max had most likely suffered from a ruptured esophageal varices.  Esophageal varices are enlarged veins due to obstructed blood flow to the liver and are usually associated with advanced liver disease.  We had spent so much time in 2019 trying to get his seizures under control, we totally forgot that he also had the liver of an 80 year old barkeeper.



So what do we do now?  When the varices ruptured, it alleviated the pressure that had built up, so Max feels great right now, but there’s really no real solution to stop the same thing from happening again.  We are meeting with his gastroenterologist to explore a possible beta blocker, which may help with bleeding, or exploring rubber band ligation to essentially cut off the varices.  However, neither of these options are 100% effective and this diagnosis has the feel of a ticking time bomb.  

So how is Max? He’s happy, playful, and as ornery as ever.  How are we?  Overall, we’re scared and this super sucks, but I suppose it’s just one more rock on the shit* mountain of PBD.  
 
So here is my prayer:

Dear God, thank you for each new day where you protect us and love us.
Thank you for providing us the kindness and support we need to persist
Please give us the continued strength to find the joy and happiness in all situations
And to fight for Max and all those that need a voice.  Amen 

*Here is an article correlating swearing with intelligence that I stand by: 



Also, Max came extremely close to receiving a blood transfusion, so just a gentle reminder to give blood if you can.  Preferably, O positive if ya got it :) 



8 comments:

  1. Suc a powerful post and prayer...

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  2. Thank you for reminding us of what truly matters - grace, humor, humanity, love and thousand piece puzzles. You all are amazing. Lots of love and continued prayers.

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  3. My heart goes out to you amazing human beings. You are amazing parents and are doing great and Max is so lucky to have you!

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  4. What a hard thing you are going through. What a wonderful mom you are. What a sweet boy you have. Wishing you strength to endure...and to swear!

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  5. I'm so sorry you guys are going through that! Max is lucky to have you and Todd as parents. Sending love and prayers. ps I lol'd at the Greg Garbe line

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  6. Corrine, thank you for sharing so honestly and with humor! Your words came searing through to the very core of my heart. One of Max’s gifts to us is the opportunity to love one another in challenging circumstances. What a beautiful and powerful spirit he brings into our midst, I can feel it, and it gives rise to a deep compassion that flows into the world through my heart. Doesn’t the world need more of this? Thank you Max for bringing your gifts, thank you Corrine for bringing yours as well.

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  7. You write about this hell with such honesty, grace, and humor, Corin. I will pray your prayer with you and for you all. SO much love to you. Give Todd a great big hug from me. Peace, Erin

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  8. So sorry to hear this - as well as the latest post. Praying with you and for you and your sweet boy.

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