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Thank you so much to everyone who answered our call for thoughts and prayers yesterday. They worked. The stridor is gone and Nicholas didn’t have to be intubated. Last night was a little rough because he wasn’t allowed to nurse. The doctors wanted his tummy empty in case he did need to be re-intubated.
He’s eating now. Albeit through a gavage tube—I don’t think he cares. He’s not hungry any more.
Now that yesterday’s swollen airways are on the mend we turned our attention back to the original problem of randomly collapsing lung lobes. Unfortunately, this morning’s chest Xray revealed a collapsed upper right lobe which was the original problem that landed us here.
Sean and I informed the neonatology and pulmonary team on Thursday night that if after extubation the lung problem re-emerged we would need to move Nicholas to Cincinnati Children’s (one of the premiere pediatric pulmonary hospitals in the country). After this morning’s Xray they offered to flip one more diagnostic stone before we go.
Nicholas is currently on call for a chest CT angio with contrast. They are looking to rule out an errant blood vessel running off of the aorta that may be placing unnecessary pressure on the upper lobe of his right lung … Read the rest
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Nicholas was extubated this morning after his chest xray showed an almost complete recovery in his lungs. But, as we are learning one delicate medical situation can often lead to another. It appears Nicholas’ airway is quite swollen due to irritation from being intubatedtubated. He is wheezing like he has a monstrous case of the croup. He has been placed on an aggressive steroid to bring down the swelling in his airway.
Please pray that this works. He is really struggling and if it doesn he will need to be re-intubated.
More in a few hours.
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First Sean and I want to continue to thank everyone for their continued thoughts and prayers.
Nicholas’ chest xray this afternoon indicated significant improvement. We expected that would be the case given his current state of intubation and direct tracheal therapy. I will tell you that watching your child struggle with being on a ventilator is a special kind of torture. He gagged a lot on the tubes last night, but as the day progressed I think he became more accustomed to the feeling of the tubes going down the back of the throat. (The feeding tube –gavage tube–is also threaded through his nose and down the back of his throat. No fun.)
Did you know that an intubated baby cries silently? You can see them crying but there is no sound. Think silent scream. It’s a sight I could have lived the rest of my life never seeing again. (Ryan was intubated for eleven days following his premature delivery in 1997. Even though we’ve been here done this it is still very, very difficult.)
Regardless, we are grateful that Nicholas seems a little more peaceful tonight.
Although his chest xray was improved, the pulmonologists agreed it would be better to keep him intubated for at least one more day. … Read the rest
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Thank you all for your prayers and support. I think they are working.
Nicholas tolerated the procedure like a champ. The pulmonologist who performed the broncoscopy was quite impressed with his strength.
Here’s what we learned today…
There are no physical malformations or abnormalities with Nicholas’ airways, lungs or esophagus. That’s good news.
There are no signs of infection in his lungs. The fluid they were able to suction was crystal clear. (We kind of already knew this as there has been no indication of infection in his blood work. They are culturing it anyways.) Also, good news.
It is still the opinion of our pulmonologist that Nicholas’ troubles are a result of not fully eliminating the fluid from Nicholas’ lungs during the birthing process.
To treat the lungs more efficiently Nicholas is currently intubated and on a ventilator. The purpose of the ventilator is to help him fully expand both of his lungs allowing air to move freely, thus drying them out. In addition, by helping Nicholas inflate his lungs the aerosol medications will be better able to reach the parts of the lung that had been previously collapsed.
Nicholas is being fed through a gavage tube (tube up his nose and down to his tummy) while he is … Read the rest
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Nicholas’ chest xray this morning was worse. Complicating matters there is now left lung involvement. (Up until now the problematic areas of collapse had been limited to the upper and middle lobes of his RIGHT lung.)
He is undergoing a broncoscopy between 2-4 this afternoon. It also appears it is likely he will be intubated and placed on a ventilator 24 to 36 hours following the procedure. He will be sedated during the broncoscopy and will most likely need to be sedated during his intubation period. (He’s kind of a spunky kid who without sedation would probably give extubating himself his best college try.)
I just stood at his bedside and watched them place a new IV in him for the procedure. They were giving him sucrose (sugar water) to release endorphins to help with the pain and I was helping him suck on his binky while they stuck him. Remember how I wrote I was fighting the instinct to grab my baby and run from the room?
We are hoping for some answers as a result of this procedure. Is it some sort of crazy virus that isn’t responding to the antibiotics? Is it a malformation of his larnyx that is somehow allowing breast milk into his … Read the rest