Thursday, May 7, 2015

Numb or Covered?


 The past 48 hours have been quite a roller coaster, and while I should be feeling a lot of emotions, I am not. If feels as though I'm numb from all the constant ups and downs; my mental and emotional capacity has hit its maximum. Or it could just be that God's loving angels are protecting me from losing myself in the storm. The constant prayers that are flooding our family have enabled us to experience a peace that truly does surpass all understanding. Thank you Jesus.

After Levi's constant episodes Monday and Tuesday morning, the doctor actually put him on "high flow," which has been our current goal. It means his lungs are strong enough to get off the bubble CPAP. I was a bit confused, but the doctor explained that when he's not choking or obstructed, he doesn't require additional air, so testing him on the High Flow would help get some of the unnecessary pressure out of his tummy and lungs, which the bubbles from the CPAP can cause. I was thrilled! This means we are closer to trying other "normal" baby functions. Then yesterday came and the doctor informed me that Levi was re-intubated. WHAT!? He's back on the ventilator!? I was shocked. What happened? The doctor felt that even though he wasn't requiring additional air, he was having way too much apnea, and it wasn't good for him to take so long to recover. They tried multiple steps before putting him back on the ventilator, but she really felt like at his age now, it was not healthy to continue to struggle to get enough oxygen to his body and especially brain.

When I went to see Levi last night, the ENT was there to evaluate him. The good news is that he believed much of Levi's issues involved the excessive amount of secretions in his nose. Apparently babies don't know how to breathe out of their mouths for a while, and his nose was filled up with stuff (no one wants to use the word mucus here). :) Additionally, he not only has a small jaw, but he also has a very high arch in the roof of his mouth, both of which will cause build up of secretions and then settle in the back of his throat making it difficult for him to swallow, thus his choking and apnea.
The bad news is that because he had the breathing tube in his throat, he couldn't do his full evaluation of his airway and voice box. Needless to say there are a plethora of problems that could have easy solutions or invasive surgical solutions, but until he can get a full picture of his mouth and throat, there is no telling.

Today, the doctor was happy to here that they can work to get his nose clear, and hopeful that after a few days of rest on the ventilator, we could try to extubate him and get the ENT back to finish the eval. Levi looks pretty peaceful most of the time, but I've had to watch him gag and throw up multiple times. The nurses think it's just his aversion to the big tube that is back in his throat. Ugh.... I'd hate that too!  At least his feeding tube has been placed past his stomach and into his intestine so that he's maintaining good nutrients.

At this point, it's a waiting game. A praying time. A trusting period. There is still so much that is unknown with Levi and so much that we have to leave up to God. Matthew said it best yesterday, "I hope we can continue to respond with faith and trust that God is bigger than all of this because lots of people are watching us at that hospital. When you know God intimately, His presence allows you to feel peace in the midst of the storm."

Thank you so much for praying with us!

-- Pray that Levi won't have to be on the ventilator for long.
-- Pray that Levi won't continue to choke and gag.
-- Pray that Levi's brain will be protected from lack of oxygen during his episodes.
-- Pray that Levi will not have some sort of major anatomical issue that requires plastic surgery.
-- Pray that God would strengthen Levi and our family during periods of waiting.

-- Thank God Levi continues to grow and weighs 5 pounds 4 ounces!
-- Thank God I can continue to provide Levi with food!
-- Thank God Levi had another successful eye exam on Tuesday!
-- Thank God for great doctors and nurses at Northside!
-- Thank God for sweet Silas that constantly brings us joy and wants to hear stories about the adventures of Levi and Silas (his best friend that he's never met).
-- Thank God for each of you!

~Covered Buster

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