It has been twenty days since Drake’s heart stopped...unexpectedly....and twenty days since we got to witness our Lord and Savior move mightily to bring him back to us.
We have been home for a week now, and I think we are all still adjusting...
The kids were thrilled to have us all back under one roof. Every day they wanted to know when Drake could come home.
Eric and I were taking shifts at the hospital so our bigs, and Vivian, could stay home with one of us, and that meant the other parent would go to the hospital to be bedside with Drake. Some days that meant sleeping every other night just so we could be there when the doctors rounded, and be fully present when big decisions were having to be made with Drake.
We had some amazing friends that came and walked with us through those days. They came to help us with littles, and would come and stay to sit with our babies so we could sleep two or three hours to get us until the next night. The goodness of Father we have seen, and felt, the last three weeks has been so overwhelming. Everyday we came home to a fridge full of food, dish tabs, toilet paper, hospital snacks...if you can think of it, so did they...we even had a precious friend sneak and come get our dirty laundry and clean/fold/and deliver it back to us.
And even after we brought Drake home we had precious families bring meals every night....When I tell you God was so....so good to us these last few weeks...it extended far beyond delivering our son’s life back to us. He was in so many details. So many times when the weight was too heavy, He carried it for us through His people being His hands and feet so we could sustain the journey. He is the God of details, and we can not thank our precious village enough.
Since we have been home, Drake is maintaining well. We are having to pull round the clock care still. Shaker vest every 4 hours to help him shake loose any congestion, suctioning constantly to help him clear and get the congestion out. He has had a few consistent days now of not requiring 24 hour oxygen. He can at least come off the oxygen for a period of time, which has been so nice. We steal those moments to take the kids on a quick walk or take the kids outside and pull weeds out of the garden. Anything to get them outside and in some fresh air. Our bigs have been so patient with our limited mobility right now, and we try our best to take advantage of any time we can get outside.
Drake has been working with our physical therapists and speech trying to help assess where he is now and how we can help him forward. We even had a dear friend come to the house the day after we got him home and adjust Drake to help with any dislocated disks or bones. Drake suffered from severe curvature of his spine, and both little hips being dislocated, due to all the low muscle tone and constant seizures all his life. We had started to really make progress in his spine with PT before the incident. Unfortunately, we have seen a lot of the curvature return due to his little body being confined positionally in the hospital bed due to breathing limitations when he changed position from all the mucus.
Drake also has a large swollen area on his chest from receiving CPR for almost 40 minutes. We didn’t see any broken ribs on the x-rays but we know that inflammation and fractures are just going to have to take time to heal. We know God hand picked those men and women as our first responders to be with our son when we physically couldn’t in that ambulance. We are forever grateful for the part they played in sustaining his body.
We are bracing Drake daily with his resistance suit, and supporting his breathing and congestion as best we can with positioning and chest percussions. He is getting stronger everyday. And everyday we are seeing him improve. His steps are small...and we are clinging to them right now.
I have struggled with fear these last few days. I see God reconnecting Drake’s brain right in front of our very eyes....I am watching him get stronger everyday. I think as my guard comes down, so does the wall that I placed around my emotions. I am finally allowing the emotions of what happened to start to creep in... the pain of watching our son literally die, and then come back to life....the fear of what his future will look like now.... or could this nightmare of his heart stopping happen again... could it happen to Vivian who also has this terribly disease?
As much as Father has kept us encouraged...I miss Drake’s beautiful quirky eyes....his eyes with his little eyebrow raises and looks that tell all his amazing thoughts with one glance. I miss the stories he would tell me with just one long, connecting stare. He could show you all his emotions, thoughts, and lack of excitement (just ask our PT) without ever saying a word. His tracking has improving, and although we have not see any movement from his legs yet, he now can respond to someone touching his left leg.
And I know Father is working on His perfect plan for Drake...my mama heart has just been heavier.
I think our emotions have been higher this week as Vivian is on day three of increased seizures as well.
Having two pulse ox monitors beeping at us is tough....and watching her little body struggle, especially after we know how fast Drake just turned a few weeks ago, ramps up the feelings of being unsettled.
Today I brought my writing table and placed it straight in front of the window in our bedroom. I love to be outside and just put my feet in the grass. And with all our limited time outside of the house, I thought I could at least look outside for a bit....
Isn’t it just like Father to meet you where you need Him....
He reminded me... as I looked at the flowers and trees blowing...even the massive white clouds that have been so present and close these last few days.... that if Father can sustain and create all of the beauty I see....all the living organisms....the wind, the sun, the seeds, the seasons well before my babies were ever living on His gorgeous creation.... then doesn’t my Father in Heaven know their needs even before I ask Him to reveal it to me? And isn’t He fully sufficient to provide for them? Doesn’t He know my needs, and my fears....even before I make my plea to Him.
What more than can I need....but to be known and loved by Him....He loves my babies more than I could ever fathom...they were His before they were mine... and He knows their needs.
My job is to worship Him and make Him known...
He can handle all my fears and hurting.
He is big enough, and is already working them for our good.
Please pray for Vivian...for her body and seizures to start to calm. Also, please pray for Drake. We have a follow up EEG next week. His last EEG in the hospital was blank for almost eight hours, so we are definitely praying for a better report this time. We also have to discuss further treatments of a new treatment we started in the hospital.
It is an experimental treatment and getting it covered and administered monthly is going to be an uphill road. We know God opened the door for Drake to try it, He actually had been bringing us to this door for years now and I was too scared to step out. I was scared it would shift their bodies too much. He made it clear in the hospital that this was the time, and we have seen so many improvements already. I can not wait to see what six months to a year could bring if we were able to stay on it.
Please pray with us for God to open a door for it to continue and not only for Drake, but that we can get Vivian approved for it as well. We are documenting everything as this is the process that has to happen to open treatments for approved therapies to not only our children but other families with NKH. Pray God continues to push back the darkness and make a way for healing.
Please pray for Drake’s ‘eyes’ to come back to us...
They say a person’s eyes are a window to their soul...and I believe our sweet boy has a story to tell.
One story he has to start with is telling Daddy and Mommy what he talked to Jesus about during all that time his little heart stopped a few weeks ago.
Thank you for walking with our family and for praying with us during the highs and the lows.
To God be the Glory.
Forever and Ever.
Matthew 6:25-34 (ESV, emphasis added)
Do Not Be Anxious
25 “Therefore I tell you, do not be anxious about your life, what you will eat or drink; or about your body, what you will put on it. Is not life more than food, and the body more than clothes?
26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?
27 Can any one of you by worrying add a single hour to your life?
28 “And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin.
29 Yet I tell you that not even Solomon in all his glory was not arrayed like one of these.
30 But if God so clothes the grass of the field, which is here today and tomorrow is thrown into the oven, will he not much more clothe you—
O you of little faith?
31 Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’
32 For the Gentiles seek after all these things, and your heavenly Father knows that you need them.
33 But seek first the kingdom of God and his righteousness, and all these things will be added to you.
34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.