Tuesday, September 29, 2009

This is Lord's Doing. It is Marvelous in Our Eyes.

God's letting us take our baby boy home today.
After four and a half months. After 4 weeks in NICU, 15 weeks in PICU, and 5 weeks at OCH. After one CAT scan, two heart caths, one open heart surgery, cardiac arrest for 26 minutes, 2 days on ECMO, a head bleed, 3 seizures, 6 weeks on dialysis, weeks and weeks of being hungry on IV nutrition, an illius, 3 infections, dozens of IV sticks, hundreds of blood gas sticks, 5 weeks of a heart rate over 200 beats per minute, multiple shocks with the crash cart, a trach surgery, a stomach surgery, multiple blood transfusions, and a brain MRI, Luke gets to go home. He gets to ride in a car for the first time, sleep in his own bed, and meet his kitty cats.
This boy that wasn't supposed to make it until 26 weeks gestation. This boy that was supposed to be born months early and seriously underweight. This boy who probably would have to live breathing off of only one lung. This boy who stumped the doctors with his arrhythmia and the physical size of his heart. This boy that showed us that the foolishness of man is the wisdom of God. This boy who thousands of you have prayed for. This boy who God has healed with undeniable miracles over and over. This boy's going home with his mama and daddy.
For real.
For keeps.
David and I are more ready for this than we've been ready for anything in our lives. Our funding for the Medically Dependent Child Program (MDCP Medicaid) has gone through, but we have one more hoop to jump through. We have to do an "overnight" stay in a nursing home. The closest nursing home that will take vented and trached kids for this purpose is in Tyler. The overnight stay doesn't have to be 24 hours, just from one day to the next - over a midnight. Our plan is to leave Baylor at 8:30 pm and travel via ambulance to the nursing home in Tyler. I'll be with Luke, David will follow with our car, and our night nurse will follow in her car. We'll stay at the nursing home long enough to feed Luke and give him a breathing treatment, then we'll leave there around 12:30 am. David, Luke, and I will ride in our car home to Terrell, with the nurse following us. We expect to arrive home about 2:00am, where my parents will be waiting for us with a clean house and a stocked pantry. We'll get Luke settled, and then try and get a few hours of sleep before the chaos of tomorrow when we will have our disposable health care supplies and some of our permanent equipment delivered and we have to figure out where to put it all.
We almost had a crisis yesterday. Our care coordinator came up and told me that at this late point in the game, our insurance, who has to pay for the 30 day gap in home health care services before MDCP picks it up, decided that they didn't want to contract with the nursing company we chose (we chose them 5 weeks ago, and they're just now saying this). So they wanted us to go with a company they chose, and keep Luke in the hospital for a few more days while they lined up our nursing care. I said absolutely not. Our care coordinator did some magic on the phone, talked to somebody's boss's boss, and got it worked out. So we get to keep our fantastic nursing company, and we still get to go home tonight. It was just really scary and frustrating for a few hours yesterday. Satan trying to spoil things.
I also want to tell you about some more happy news. For the last 10 days or so, the pulminologist has had Luke do something called trach collar trials. During these trials we take Luke off the ventilator for a period of time (a little scary in itself) and allow him to begin to learn to breathe without it. Instead, attached to his trach is a collar which delivers oxygen and warm moist air through his trach to his airway. Luke has been doing fantastic with these trials. They started him at 15 minutes. He is now up to 1 hour long trials twice a day. Luke's oxygen saturation needs to stay between 65 and 90%, with the target range between 75 and 85%. On the ventilator, Luke has pretty well been staying between 67 and 73%. During the collar trials he's been consistently satting in the 75-90% range. This is splendid news because it means that Luke's airways are getting much stronger and he won't be on the ventilator for very much longer. The nurse practitioner said that they want to wean him off slowly because its respiratory disease season, and he's still a little small for his age (Although he weighed in at 11 lbs. 13. oz yesterday - that's almost a 3 lb. gain since moving to Baylor 5 weeks ago!). We are getting the equipment in to continue these trials at home.
Last night I gave him his bath during one of these trials, which was awesome because he wasn't hooked up to the vent, and I didn't have to deal with hoses being attached to his throat (we used a mini humidifier called an HME instead of the trach collar for the bath). And I got to hold him over my shoulder chest to chest, which I've only done once before. Blissful for me. Luke hated it. :) Maybe we'll do some more of that soon, and he'll get used to it.
Last note I told you that I hoped my next note would be an announcement that we're taking Luke home. It is!!! Thank you all for your continued prayers. Please pray that our discharge, nursing home stay, and travel home all go safely and smoothly. Also, we need your prayers that our insurance approves the monthly injection Luke needs to protect him from RSV - we want to keep Luke out of the hospital until his next surgery planned in March. We need to keep him well, he needs these injections, and they cost $2,000 a pop without insurance. UniCare NEEDS to approve us. Thanks for your prayers. We love you.

This is the day the Lord has made. Let us rejoice and be glad in it.

Rachael, David, and Luke


  1. Wait till the San Antonio Prayer Warriors read all of this! Many tears of joy on your behalf and for God's continued love, healing and care for all of you throughout this LONG struggle that none will ever understand, but you have survived, glorifying Him all along the way.

  2. WOW! His work in you guys is awesome! You have learned lessons God will allow you to share with many others. He has conforted you so that some day you will comfort others with the same comfort you have received! (II Cor. 1)WE have cried over Baby Luke and prayed for him many times!! Our mighty God is the Great Physician--please heal Baby Luke ALL THE WAY,God!! We are trusting in YOU alone!!

  3. Rachael, David and Precious Baby Luke--We are so very happy to hear your good news!!! God does hear our prayers! So happy you all will be a happy family TOGETHER now! Love and prayers, Bert and Mary Ann Stark (friends of Vicki and Gary Cunningham)

  4. Rachel, David and Baby Luke---Wow....God is Good all the time, and All the Time God is Good. Thank you for sharing your journey with all of us that don't even know you.Our prayers will continue to be sent your way. Your deep faith in a time of uncertainty is so inspiring to me. May God continue to bless your beautiful family.Debbie Marbach(friend of Vicki's)

  5. This is the most awesome news I have ever heard. The Grace of God has definitely been opoured out on all of you. May his peace remain in your hearts. satan is always around the corner, so take every opportunity to call on St. Michael to protect you.

    Saint Michael the Archangel defend us in battle. Be our protection against the wickedness and snares of the devil. May God rebuke him, we humbly pray; and do Thou, O Prince of the Heavenly Host- by the Divine Power of God- cast into hell, satan and all the evil spirits, who roam throughout the world seeking the ruin of souls.

    God Bless you all