Saturday, July 25, 2009

We Need Your Prayers for Another Miracle

Luke doesn't give us a chance to catch our breath. It seems like as soon as we get a chance to catch our breath something else happens. We need your prayers for another miracle folks.
Last Thursday, the docs attempted to take Luke's breathing tube out to see if he could breathe on his own. He only made it a few minutes before they had to re-intaibate him. They told us not to worry, Luke just simply wasn't ready to go on his own yet, but we would try it again this week. The doctor on call this week was shadowing the doctor on call last week, and was present for Luke's attempted extibation. He had a hunch that something more was going on with Luke than a simple, "he's not ready." So yesterday he sent Luke down to the OR where they put him under anesthesia and took out the breathing tube. While he was still asleep and breathing on his own, they dropped a scope down his airway to take some pictures of what was happening down there. They discovered that Luke's left bronchus is "floppy" (the highly technical medical term they used). It closes when it doesn't have the positive pressure from his ventilator. The bronchial tubes are cartilage - like your ear or your nose. In very young babies, the cartilage of of the bronchial tubes has not hardened like it has in adults - making it more "floppy". So they re-intibated Luke and brought him back to the PICU.
We are basically faced with two options. 1) They could do a tracheostomy. They would cut a hole in Luke's throat and insert a permanent breathing tube in the hole. Since Luke needs the positive pressure support of a ventilator, they would hook that up to his trach and he would go home on a ventilator. It's extremely difficult for a child to learn to eat with a trach. Since Luke never has learned to eat in the first place, that makes it even more difficult. So, we are also looking at them putting in a gastrostomy tube (or G-tube). This would be a permanent catheter inserted into his stomach where he would receive breast milk for as long as he needs the ventilator/trach. It is difficult to estimate how long Luke will need the trach while his bronchial tubes grow and strengthen and harden. Likely he will need it until sometime between his second surgery (at 9 months) and third surgery (at three years). That's a big time window, and we're looking at several months to three years.
Option 2) is we could keep him in the hospital on hospital ventilation support until he can breathe on his own, which again would be several months to multiple years, there's just no way to tell. Needless to say this isn't really an option for us. We have to take him home.
Last night, I admit, I lost faith. I despaired. Maintaining a trach is a huge job. You have to clean it, suction it, and change it. Plus, Luke will constantly be attached to his ventilator. Though it's supposedly only the size of a laptop, we will have to haul it and all his back-up trach accessories everywhere we go. We would only be able to leave Luke with a caretaker who has undergone extensive training on how to care for his special needs (that's assuming I could ever let him out of my sight). Because Luke will still be on the ventilator, he still won't be able to make sound - no crying to alert mom and dad that something's wrong; no cooing and laughing when we play. Also, no swimming or submerging in water. I think the most heartbreaking for me is that it precludes nursing. I've gotten through countless tedious pumping sessions by thinking about the time when I would finally get to hold him to me and bond with him while he nursed. The death of yet another one of my hopes. We've buried and grieved for so many.
Last night I cried and cried. I doubted. I wondered how we will take care of such a special needs child. I worried about screwing up and that screw up being lethal to our child. I think that this is such a huge mental and emotional hurdle for me because we were ready for an extended stay in the hospital, but the expectation was that when we went home, we would leave this nightmare behind us as we prepared for round two at 9 months. Now it looks like this nightmare's gong to follow us home. Before last night I knew I was going to struggle to find the energy to do normal mommy things after staying so long at the hospital - how in the world am I going to find the extra energy to take care of a baby with a trach, a ventilator, and a G-tube without the everyday little gifts of joy that other mommies get like hearing her baby coo or cradling him at her breast? You think taking your first baby home for the first time under normal circumstances is daunting - lets add a trach and a ventilator...
It may be selfish, but I really don't want to do this. I'm DREADING doing this. I don't know if I CAN do this. I hope it's not too much to ask for a little bigger sense of normalcy, because I'm going to ask. I want Luke to have a more normal upbringing. I want him to experience pleasure in tasting his food. I want him to learn to walk without having tubes attached to his neck. Selfishly, I want to eventually be able to leave Luke with a sitter and go on a date with my husband again. I don't want to have to cry as Luke struggles and I have to hold him down to change out his trach tube. I want to get some sleep instead of lying wakeful because I'm afraid Luke will get into respiratory distress without me hearing that he's in trouble. No this is not a life or death thing, but it certainly is a quality of life issue - for both Luke and his parents.
Folks, when Luke was in the NICU, you prayed that Luke would be able to use his left lung. He started moving air through that lung a week later. You prayed that his heart rate would slow, and a few days later he went into the cath lab and came out with a brand new (and perfect!) heart rhythm. Please stand with me and ask God for another miracle. Nothing is too hard for him. A collapsing airway is not harder for him than a collapsed lung. We are going to wait two weeks and repeat the scope procedure to see if anything has changed. They are not expecting it to change and are fully expecting that they will do a tracheostomy on my son at that time. Wouldn't it be fantastic if God stumped them again?? If in two weeks they walk out of the OR and say, "We can't believe this, but his airway stays open!" My faith has been renewed. Dr. Kao made the call to wait two more weeks before doing the trach, and I believe it happened that way specifically so that we could stand and be amazed once again at God's work in Luke's life.
We ask that you pray once again. Please pray that Luke will not need a tracheostomy. If God decides that he does need it and we need to go that route, please pray that David and I will have the strength and the endurance to handle Luke's care. I admit. I'm tired. I've had it. I don't think I can take one more thing. I need your prayers for my son and for me. Thank you for your faithfulness in prayer. Thank God for his faithfulness and mercy in all things.
We pray that you are blessed as we are.
Rachael & David


  1. Hi Rachael and David- I'm a friend of Rebekah T.'s, and wanted to let you know I'm praying for your baby! I've been keeping up. God bless you through these days.

  2. Oh, there are lots of prayers going up on your behalf right now in my household. I am a friend of Clarissa's. My son spent some time in the NICU and ultimately had to come home wired up to a monitor. While my son's problems were not nearly as extensive as Luke's, I can still relate to parts of your experience. Because of my son's breathing issues we carted a breathing monitor around EVERYWHERE until he was 8 months old. He had to constantly be wired and could only be unplugged for two hours before we had to "plug him back in" again.

    I can sympathize with how overwhelming. I remember being incredibly overwhelmed by the whole thing and all I had to do was lug a big box around! Its okay to feel overwhelmed and lose faith. There are entire Psalms where David is screaming at God. We are human, God knows that and loves us through it.

    As for the breastfeeding, I can sympthise there too. Because of my son's breathing issues they weren't sure if he'd be able to breastfeed consistently. I remember sitting in those stupid pumping rooms in the NICU crying and crying. God carries us through.

    I'm not sure if all that I just wrote is helpful at all, I just wanted you to know you're not alone through this. If you ever need someone to "yell" at, feel free to email me. I remember wanting to YELL at someone when I was going through all that who could understand and wouldn't keep telling me "keep faith and it'll be okay." Sometimes you don't want to hear that, you just want to be angry!

    Again, your family is in our daily prayers. ~ Allison

  3. We are hurting with you. We continue to lift all three of you up in prayer and we WILL pray for another miracle. Rachael, I know firsthand how exhausting medical issues are when it comes to our babies...I will lift you up. Love Mark and Jana

  4. Your sweet family is in my prayers!! I don't have the words to say since I have never been in your situation. I just pray that God will wrap His loving arms around you and carry you through this rough time. I will pray for a miracle for Luke and that will get all the glory in the end no matter what! Hang in there and know that your Abilene family is praying for you.

    Rene Owens

  5. We're asking God for another miracle for your precious Luke. And we're praying for strength, guidance, and assurance in all the uncertainties ahead. Love you guys!

  6. What ever you do, don't despair Rachael. Our Lord is with you every second of every minute of every hour of every day. I would try offering your suffering up to Christ for he knew the ultimate suffering in his Passion and Crucifixion. Please don't worry about the future, God will provide whatever strength you and David need. He always does! May God bless you all

  7. Rachel and David, When we talked with David on Tuesday we were so excited to hear the news that Luke was doing better and would be going home soon. Reading this tonight is heart breaking. Our first child is waiting for us in Heaven. When she was born there wasn't technology to sustain life like there is now. Luke was born to the two of you for a reason. He was born at this time, in this place for a reason. Foy is standing here ready to pray as soon as I quit typing, and we will pray fervently for God's will to be done and for you to have the strength that you need for what happens in the next days and weeks. You are not alone on this journey. Continue to vent, to share, so that we know exactly what to petition our Father for. Our love, Foy and Mary Sue Owens

  8. We are praying for God to bless your family
    with a miracle. Sometimes the miracle happens
    right away, sometimes it is easily seen. It will be
    the perfect time in the perfect way. For us we had 3 years
    before Jack's tumor was healed bit the blessings along
    the way were miracles too, when I didn't think I could
    function as a parent of a 6 year old with cancer with joy
    God blessed me with a miracle to thrive as a mom, with joy
    and gratitude. I always felt I could complain to God and He
    was there to listen and fill me with His grace to get through
    another day, His mercies are new every morning. My faith
    was stretched at times that I thought I might have none left
    but I guess I had austard seed left because my faith was
    grown by God in ways that I could never have imagined.
    God knew Luke would need you two as parents to make this
    journey with him. You were specially chosen to love and care
    for Luke unlike anyone else could. You have a calling on
    your life and that is to hold on tight to the Lord and live life to
    the fullest as you take what each day brings. We are
    your cloud of witnesses cheering you along.
    It might not seem possibleto see right now but you
    have been given a gift in Luke that most don't get
    to experience, the gift to see just how precious life is
    never to take it for granted. Each breath to ne taken with
    gratitude because life is fragile. Each day on earth that
    seems like it is too much, too much emotion, too many doctors,
    too much difficulty we can close our eyes and think about
    what the apostle Paul says about the race, and then
    we can rest in Gods words in scripture, "well done my good and faithful
    love and prayers sent your way.

  9. Sorry there are so many typo's I'm typing on my phone as we are driving to dallasto drop off Jack for camp. We will be at Childrens in Dallas today from 11-1. I don't think ya'll are at childrens but if we can come and pray with ya'll we would love to. Call this morning if we could come by, ya'll are in Dallas right?

  10. I don't know you, but have been keeping up with your family through this blog. I can't imagine a day in your shoes and I don't know what words will bring you comfort. But I do know that our God is the Great Physician and Healer and that He can work a miracle, not only in your precious baby boy, but also in you. May He sustain you, energize you, and renew you as He works powerfully through you and for you. May He heal Luke's "floppiness" by strengthening his frame. May He continue to cause a strong, steady heartbeat and the ability to take in nutrition and the ability to breathe. And may He receive all the the glory and praise for His good works. Your family is being lifted high and lifted often!

  11. David and Rachael,

    We will honor your request and pray that Luke will NOT need the trach. God has been more than competent so far to answer the many, many pleas of righteous people on your behalf. We will petition Him over and over until this struggle is done and Luke is home. It will be our prayer that now that his heart is not taking all of his energy, his body can do what it needs to do in all areas and be yet another miracle for all to witness.

    Vicki and Gary, San Antonio Prayior Warriors

  12. "Out of the depths I cry to you, O Lord; O Lord, hear my voice. Let your ears be attentive to my cry for mercy....I wait for the Lord, my soul waits, and in his word I put my hope." Psalms 130
    Praying constantly from Corpus.
    Cara and Barrett
    (Blake's sister)

  13. This is just Satan poking his ugly head where it doesn't belong because he's sees what is going on with this child and you. Don't give up keep persevering! God is with you and His will be done!! No matter what that is. I can only imagine how draining this whole ordeal is but you know He doesn't give you more than you can handle. Not what you think you can handle but what He knows you can handle. Still praying everyday for you and your family. God Bless.

  14. Rachael and David, I am Mary, Sharon's cousin.
    On behalf of the Evers' I wanted you to know that our love and prayers are with each of daily.