Praying for a God Size Miracle

My devotions tonight, fittingly enough… took me to Matthew 14 where Jesus walks on the water and it made me recognize that I’m having a Peter moment.

In vs 29-30 Jesus said to Peter “Come”.  So Peter got out of the boat and walked on the water and came to Jesus.  But when he saw the wind, he was afraid, and beginning to sink.”

When Peter took his eyes off Jesus and got distracted by fear it caused him to sink and nearly took him under, but Jesus never moved.  He stayed right where he had always been.  

Vs. 31 - Peter cried out “Lord, save me!” Immediately Jesus reached out his hand and caught him.”

Immediately. Immediately Jesus caught him.

God knew I needed to be reminded that no matter what’s swirling around me today, He is there ready, willing, and able to help just like he did for Peter.  So, I’m being gentle with myself, pausing and taking a deep breath and refocusing myself back to God when the current circumstances with Veya want to pull me under.

Looking back at last week, overall it was a quieter week for Veya.  The team decided it was best to keep Veya “medically paralyzed” or “muscle relaxed” to help curb her pulmonary hypertension.  This means we don’t get to see her big, beautiful eyes staring back at us and it’s hard but we know she needs this.  They also brought on board her new PH medication

called Flolan. After a couple days of being on Flolan the team attempted to take Veya off the muscle relaxer.  They attempted this twice, but it was unsuccessful for Veya.  Though she didn’t look in distress outwardly, her lactic acid levels said otherwise.  They were quite high, which meant she was very uncomfortable, so they put her back under and to this day she remains medically paralyzed.   

We had our first family meeting with her whole team last week Tuesday and it was the first time that surgery was discussed for Veya. The team’s goal for Veya was to see her respond well to her new PH medication, successfully remove her from the muscle relaxer and get her to a better spot where they would wait for that window of opportunity to present itself for them to jump in and do her heart repair.  The team remained cautiously optimistic and reminded us that they weren’t sure if that window had already passed for her. 

Fast forward to today…we have officially hit 100 days of being in the hospital with Veya and unfortunately she is struggling to meet the goals her team has for her.  She is not responding well to her PH medication and on top of it...it's not really improving her pulmonary hypertension.  The team had to tell us today that they have flooded Veya’s lungs which is not good.  She now is struggling with pulmonary hemorrhaging from this very strong medication, and we can visibly see that when they need to suction down her breathing tube to help pull mucus out from her lungs since she is unable to cough it up herself being medically paralyzed. I spoke with the doctor today as well as her PH specialist, humanly speaking they are running out of options to help Veya. 

What do the next steps look like now for her?  We are unsure.  Her team is going to reach out for a second and third opinion from two accredited PH pediatric facilities – one being the other cardiac hospital in Edmonton and the other located in Buffalo NY to make sure there isn’t something they have missed or if there are some other suggestions they could try to help get her to a safer spot for surgery.  The team feels that at this point Veya really needs the holes patched in her heart to stop the blood shunting so drastically from the left to right side of her heart. This in turn can help bring her PH down.  The only problem is she is on a lot of support measures and needs 60% oxygen support which doesn’t leave the team much room to help Veya should she have a PH crisis during her repair or a cardiac arrest.  The team is also going to discuss with the surgeons if they are even willing to take on such a high-risk procedure and just attempt a repair and hope that Veya will remain strong enough to pull through. 

It's difficult to write this and it feels like an impossible calling to make such big decisions for our daughter…but I’m going to walk right up to the heart of God and cry it out to Him tonight.  I don’t know where to go from here.  I don’t know what is happening. I don’t know how to keep up with processing this.  I don’t know how to make these decisions for Veya. I don’t know what to do with all the emotions I’m feeling.  I really don’t know how to handle this hard situation.  But I have my faith in Him and will continue to try and walk boldly in the assurance of His unfailing love and faithfulness.

Please continue to be our prayer warriors.  We could use every single one of them.