Day 48 – From Alyse and Jason

When this journey began, Alyse (the nurse practitioner) tried to communicate medical updates as they occurred. It didn’t take long for that to be impossible (all the mom’s are shouting amen!). I was honored to take over the task, but it’s always been their story to tell. They wrote this to update everyone on some big days that have happened and for specific prayer requests. You’ll once again notice Alyse’s nursing influence. Thanks#TeamJustus!
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Yesterday we (Jason & Alyse) were able to leave the hospital for an hour and grab dinner and pray together. While praying, God suddenly reminded us of the prayer we have been praying over Justus since he was growing in his mommy’s tummy and the words that have become a part of our bedtime routine: “God, use Justus’ life for mighty kingdom work. Help him to see the plans and purposes over his life and be obedient and joyful in that calling. Use him to draw others closer to you.” Tears were shed thinking about the fact that God is answering that prayer right now. Obviously not in the way we would have hoped or thought. But His ways are not our ways, and his thoughts are not our thoughts… We are praying that prayer again (We admit, it has not been our prayer since being in the hospital) and asking God to finish the good work he has started in Justus and to carry it on to completion. We want to give God all the glory for what He has done and what he will do.

There are so many praises to worship and thank God for. We need to be reminded to start our days with Praising God for who He is, and then to remember with gratitude all the ways He has already shown us His faithfulness, mercy and compassion.

We are out of the PICU. Justus is breathing on his own, just room air! His heart is strong. He has only a tube in his nose!! He gets stronger every day. We have been loved and cared for by an incredible team of doctors, nurses, and therapists.

Here are some more recent praises: Justus is engaging more and more in the world with his eyes and even turning with his head toward stimuli sometimes. He seems like he can move a little bit more of his extremities every day- wiggling toes, moving a finger, etc. His respiratory status has been pretty stable, and steadily improving. His latest chest X-ray looked better than the previous one. He has such a strong cough! For nearly 50 days in bed, his skin is healthy and intact! His GI and urinary systems are working well!

Several people have asked for specific prayer requests. Here are our top ten.

1. That God would continue to be present to Justus in a very real, tangible way. That Justus would not feel alone or afraid because of the overwhelming sense that Jesus has never left him. (This is papa’s two bits… you can check this one as answered )

2. Complete healing and restoration. Nothing broken and nothing missing. That Justus’ body would function exactly the way God originally designed and created it to function.

3. Rehab- that God would go before us. For strength and endurance for this new stage of healing and restoration. For hope and energy and love. Please pray in the Name of Jesus against strongholds of fear, anxiety, anger, pride, bitterness, and resentment- anything not of God!

4. Pray for our marriage- that we would work together as a team and be encouraging and supportive toward each other, slow to anger and abounding in love. Pray for communication, decision-making and that we would be able to carve away purposeful time together.

5. Respiratory status- continued prayers for Justus to manage his secretions, maintain his oxygen levels, get stronger in his swallowing, be able to initiate productive coughs that would clear out his lungs and protect him from pneumonia. Pray against gagging and vomiting, so that Justus can get all the nutrients he needs. That he would gain back the weight he has lost and continues to get stronger and stronger physically.

6. Medication wean- last night was the last dose of Phenobarbital. We are still weaning the methadone and then will have to wean Ativan. At some point we will start discussing getting off one of the seizure meds too. Pray for protection against discomfort, agitation, pain and withdrawal. Please continue to pray over all that is going into and out of his little body- That his liver and kidneys would continue to filter and process all these chemicals effectively and efficiently.

7. G-tube surgery (highly recommended and it will get the tube out of his nose)- Please pray for favor with the surgery schedule. Since it’s an elective surgery, we aren’t guaranteed a day/time. And he will have to stop feeds for at least 6 hours prior. Pray that tomorrow they are able to get him in without issue, that he only loses a minimal amount of nutrition and that the surgery is successful. Pray over anesthesia risks and complications (especially those related to recent intubation and brain injury) and all the risks associated with the surgery- bleeding, infection, leaking at the site.

8. Cranial flap replacement- will be scheduled sometime next month (October). Pray for favor and success during a much more invasive, extensive, more complicated surgery. Pray that the bone is not reabsorbed by the body, but that it grows and strengthens and functions exactly as God designed it to function. Pray against all the risks- death, bleeding, infection, hydrocephalus, the need for a permanent shunt, etc. Give us peace to trust the doctors, but more importantly to trust our Heavenly Father’s care and compassion over Justus’ future.

9. Pray for Amaya- that God would meet her every need, both in a super natural Holy Spirit way and through the body of Christ extending their love to her. Pray that she will be confident in the fact that her mom and dad love her and care about her and always want to be with her. Guard and protect her heart during the long rehab road ahead. Preserve her relationship with her brother and remind her of their special love for each other.

10. My (Alyse) personal prayer for Jason and I the last few days is that God would purge us of pride, clothe us with humility, align our heart with His, that he would grow our faith and remind us that He is worthy of all our trust and that he would give us eyes for eternity.

Lastly, we must again communicate the overwhelming and humbling reality of #TeamJustus and what it means to us. It is a profound feeling to be in the darkest, deepest pit of despair, while simultaneously being loved and cared for beyond anything we have ever experienced. We are held up by all those loving, supporting, praying, encouraging, giving of resources, sacrificing of time, making meals, sending care packages, writing messages. There are NO WORDS to express our thankful hearts. We pray that God would not allow us to EVER forget the kindness shown to our family. What a beautiful, perfect depiction of the church being the church.

As you storm the throne of grace in intercession for Justus, our prayer is that blessings would be multiplied back on you all. We love you! Thank you for standing in the gap for us. Thank you for believing for a miracle. God is able. God is good. God is for Justus! Amen

Papa here again… The moon is round!

 

2 thoughts on “Day 48 – From Alyse and Jason

  1. My prayers are not eloquent or even long, but my heart is strong and my thoughts and prayers are with all of the family, constantly. I think of and pray for Justus throughout the day. I know God hears and answers all prayers – long or short, eloquent or stumbling. May God’s blessings shine down on you (us) all and bring a peace that passes all understanding.

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