Last Tuesday, Hope had a broncospy scope. She was put under anesthesia and her ENT looked in her airway for problems and/or progress. Sorry I haven’t shared this or the results. It’s been a busy week and it’s hard to type it all on my phone.
Hope’s airway looks good except for a granuloma in her airway above her trach. It doesn’t appear to be causing any issues right now, but is blocking 50% of her normal airway and would have to be removed if they took the trach out.
The ENT now believes that her inability to manage her secretions is neurological and not congenital – meaning it isn’t something she can just outgrow by getting bigger. The trach is essentially treating symptoms (excessive secretions and aspiration) and if it were removed at this time, her lungs would fill up and she would drown. As of right now, no changes will be made. We’re still hoping to get her on an HME valve sometime in the near future (it’s basically a humidification filter that wouldn’t require her to be connected to anything), but she has to be off of oxygen for that. We had her weaned to the minimum amount during the day, but since she got pneumonia again a couple weeks ago and a nasty case of bronchitis now, she’s on more oxygen than she’s ever been on. It seems as if we are moving in the opposite direction. It is somewhat discouraging, but we continue to trust God.
Today is Hope’s birthday. The Lord revealed something to me today – today is a victory! I woke up this morning looking like I’d been punched in the face after a long, hard night of her bronchitis. I jokingly said to my husband, “You should have seen the other guy.”
I then received messages from my mother that she had been praying since 2am without even knowing anything was going on during the night (God often wakes her to pray like this). She also sent me this scripture:
Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on the faith. The suffering won’t last forever. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, he does. – 1 Peter 5:11 MSG
God revealed to me that a spiritual battle is waging, and though my swollen face has a physical cause, I feel it is also spiritual…physical evidence of a spiritual battle. You see, Satan wants to destroy my child and my family. He has set out to destroy her from before she was born. Many of you have told us over and over, and we have said it ourselves, “God has big plans for her!” Well, guess who else knows that? She has touched so many in just her first year, and she can’t even talk yet! Just wait until she gets her say! So yeah, he has tried and is trying to destroy my child…but what the devil meant for evil, the Lord is using for good!
I hold to the words the Lord spoke to me back in July when we were making the gut-wrenching decision whether to go through with decompression surgery to relieve her Chiari malformation, and He reminds me often – “I’ve got this!” God sees the big picture. God saw 6 months down the road when the MRI would show that she has NO Chiari malformation. I see this moment. He sees from beginning to end and on into eternity. He reminds me of this as my human self gets weighed down and burdened for her suffering. When I don’t get the answers I want now. That still, small voice reminds me again, “I’ve got this. I’m in control. Let it go. Rest child.”
Rest. Something I could really use right now. Will you continue praying with us and for us? Help us fight this battle.