Josiah has returned from the OR and he is still on the respirator. He is scheduled for his 'trache' and possibly also his G-Tube for this coming Monday.
I'll post a brief review at this point, and later in the day I will add more thoughts. At the top of the list is the ENT's realization that Josiah's difficulty with breathing all stems from his epinglottis. Interestingly enough, it is not because his epinglottis is bifid - his epinglottis actually has never looked better and the ENT was suprised to see that it was improving since he last scoped Josiah. But the epinglottis is floppy and can't stay open to allow air down his airway.
This of course is extremely hard to handle and through our tears and questions we do cling to the good news that we've heard today. Other than his epinglottis, his airway looks good: it's wide enough, the tracheal malaysia is not a problem (floppy trachea), and there is very minimal build up around his chords from being on a respirator so long. Also, it is encouraging to consider that since it is clear that the epinglottis is the source of Josiah's problem, we can be hopeful that there isn't a neurological problem that isn't impairing his ability to breathe.
To us, it kind of makes sense that his epinglottis is a little floppy and lazy. Imagine having your epinglottis propped open for 8 weeks because you can a breathing tube keeping it permenantly open. Wouldn't everyone's epinglottis be a little floppy, especially if you consider that Josiah is an infant and perhaps hasn't had the time to develop him epinglottis muscles. Think of wearing a cast for 8 weeks: your abilities are seriously hampered when that cast finally comes off!
So, now we wait. Like I said, the surgery is scheduled for this coming Monday. We will need your prayers during this time, especially since there is an added risk of danger when 'traching' an infant. The ENT believes that in a year we will be able to re-evaluate Josiah's condition and take another look at his epinglottis.
We have faith that God will still do something amazing for our son. After our many prayers and tears when we heard the sad news, we are still able to smile and thank God for his goodness. Thank you to everyone who has prayed on our behalf today. There are no words to communicate how deeply we appreciate it.
Josiah is well, awake, and starving for some food. If you feel lead to continue praying for Josiah today, please pray for his surgery, but also that God will do a wonder with his epinglottis. We are so excited and encouraged to hear that Josiah's airway has demonstrated signs of improvement, proof that God is good and at work.
Until my next post, may God's Presence, Peace & Power be near you all.
- Andrew, Marie & Josiah
3 comments:
We love you guys, and yes God is good, and wow I am so proud of you both for being able to find hope and positives in the midst of hurt and not totally understanding. We are crying with you guys and cling to hope in Jesus also. Hopefully we will see you on Sunday.
Love you all, Leanne and Jeral
Hi guys!
I geuss this is a realization that God's plans are not always the same as ours, but we can trust that they are to prosper us us and not to harm us. We are still praying for your family and we will cling to the hope and encouragement that came from the ENT specialist as well. Thanks for keeping us updated, I better get back to work!
Renee
Just got back from the pool. there were 4 of us in a row together praying while were working out. I felt the presence of God so very strong even in the water.
Even though we don't understand why the outcome at this time is different than we thought hoped and prayed we can still and do praise Almighty God in every which way and situation. We serve a Mighty God who can and does do wondrous things in HIS time.
So we persevere. Andrew and Marie you guys are truly awesome and will be continually lifted up by me and others.
Thank You God that Josiah is still for now is just on the resparator and did not come out of the OR with a trach. Our hope is still now and always in YOU.
Give Andrew and Marie and extra strong measure of Your love peace and strength today. Thank You Jesus!!
Love Sue
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