Monday, April 13, 2009

Oh, the roller coaster of the PICU.  I can say that though it is still hard, there are many ways that the roller coaster gets a little less jarring. I can only attribute that to the shepherding hand of the Father in our lives. And though there are MANY ways in which I struggle to trust Jesus, I can confidently say that, by the grace of God, I do trust Him more than I did 2 weeks ago. How hopeful. 
With all of that said, I am writing again to beg you to pray. Though Shep has outwardly looked like he is accomplishing this whole breathing thing- inwardly he is not. His x-ray this afternoon proved that he still cannot inflate his left lung and he is at great risk of tiring out and not breathing at all. They would like to intabate him now, but are willing to let him wait till tomorrow mornings x-rays if he continues to keep all his numbers good. With this being said, they have told me there is a 95% chance that he CAN'T get that lung open. If they intubate him, the next and only option at this point will be a tracheostomy. A Trach is not a big deal in some ways, like you when you consider it saving his life. But it is a VERY Big deal in a lot of other ways. If he gets one, he will be in the hospital at least 3 more weeks, is at risk of infection, and will have to have it for anywhere from 1-3 years. It also means many challenging things for our family- all of which I have come to accept as part of God's will for us- if they happen. We will have to have a 24 hour live in nurse for at least 2 weeks, and then a nurse for at least 12 hours of every 24 hours every day for the rest of the time he has a trach (I'm talking a lady who we don't know will sit next to him while he sleeps all night long to make sure he doesn't suffocate). I won't exhaust you (or myself) with the details of the unkonwn future possibilities. Hopefully, you know enough to pray HARD. God has to literally open up his lung, and I know he can. But I don't know if He will, and He has given me a considerable peace about that. 
Please pray that God will miraculously inflate his lung and keep it there. Please also pray for Noah and I to have a divine amount of wisdom to make future decisions about our sons life. 

And PRAISE GOD that all of our "worst" options still include our son being alive. If the trach is the path God wants to take our family down, then all the things that means are going to be  beautiful and glorifying to God. My heart brakes at the thought of this road, but I am refusing to think too much about the future. I have today, and today God has given me the strength to face the disappointment that it has held so far. I praise Him for that, because I CANNOT produce that in myself. And I will hold on to these marks of God's grace when I fear that God's grace will not arrive in the future. It HAS and it WILL.

p.s. Please pray for a little boy who is here named Reed. He is 6 months old and has had major surgery and is struggling. We have met his parents and I told them I would get folks to pray for them. Thanks guys. 

14 comments:

Anonymous said...

We have been praying and will continue to pray for Shepherd (and all of you)... and now especially for his lung. I have also forwarded your request to other friends and family who have been asking about and praying for him.
Marsha & Donnie

Millie said...

I'll be praying! Praying for Reed also.
Millie and Colin-HLHS

Anonymous said...

Hey Noah and Stephanie,
Thank you for keeping us updated. We will continue to pray for Shepherd and both of you. It is beautiful to see how God is giving you grace for each new day. Of course it is hard and you all are tired, but it is beautiful to hear the different comments that you make that reflect the peace that God is giving you.
Love,
The Vahala Family

Anonymous said...

We are definitely still praying for everything that is happening now and will happen...it is all in God's hands and no matter what happens He is good. It was so good to see you guys on Sunday, know that we are constantly lifting you guys up in prayer.
Love you guys!
Kelly

julia turner said...

We are praying for you in Brentwood, TN. We have our own heart baby....hang in there!

julia

Steph said...

oh steph - i am praying for you guys constantly. i can't seem to stop thinking about shepherd. your strength and peace is such a testimony to what the Lord can do in difficult places. every day of this was written in His book and He will continue to sustain shepherd all the days of His life! love you and praying.

Hugh & Hollie Carson said...

We are praying for Shepher, you two and Reed. Thank you for the update. They really spur us on to pray more and more.

KR said...

praying hard for Shepherd, Reed, and all of you
"Because he has set his love upon Me, therefore I will deliver him; I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show My salvation." Psalm 91:14-16

Jimmy and Rebecca Byrd said...

hey friends, we're still praying. we prayed for you corporately tonight at the IJM meeting on campus. we love you.
becca and jimmy

Tom and Jan Lamb said...

We are praying! God will sustain you, He is there beside you.
Tom & Jan

Tori said...

We have been praying and will countinue to pray for Shep! We pray that "the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Love you,
Tori

angeyprice said...

I'm praying for you guys and for Shepherd. I pray God will open his lung. I pray He grants you grace, strength, and peace for the circumstances. He is with you!

Julie Miles said...

Found your blog through a link on Casey's blog. As a fellow heart mom who knows UNC's PICU far too well, I will certainly keep you guys in my prayers. Praying specifically for little Shepherd's lung to inflate on its own and will also be lifting little Reed up in prayer. You're in good hands there at UNC - tell nurse Jim hi for us if you see him, he was our favorite (although he may not remember us since it's been a little over a year since our son's last surgery!).

Julie Miles
mom to Ethan - HLHS
ethanscottmiles.blogspot.com

Larissa said...

Still praying with and for you! That God's mercy would be new each moment! Margaret Baxter wrote that our God is as Good as He is Great! I am praying your family will have an overwhelming sense of that truth today! Many blessings! and Much Hope!