Daily/Weekly Thoughts

The Weekend: Day's 9&10


Emmett's battle with RSV is running the course. It is a long course. But he is winning. His lungs are clearer. The secretions in his lungs are becoming watery. Early on in this battle the secretions were sticky, thick pasty stuff. Quite nasty. That change in secretion is a very good thing and shows Emmett is getting there. This virus, RSV, has nothing to do with Spinal Muscular Atrophy. This virus attacks indiscriminately. SMA is a genetic disease. It affects one in 10 000 births. With this rare genetic disease, one person in fifty is likely a carrier. Doesn't sound so rare, does it! When two carriers have a child the odds are 1 in 4 for a birth with nothing related to SMA, 2 of 4 will be carriers, and 1 of the 4 will have SMA. Definitions of SMA discuss how the loss of motor neurons cause progressive muscle loss - with arm, leg, torso and respiratory muscles affected first. Seriously, what kind disease affects respiratory muscles as it's first line of attack. What a cruel, breathtaking disease this Spinal Muscular Atrophy is! Then consider that RSV is challenging for a kid with a normal respiratory system and, at it's worst, will mean a lengthy hospital stay - then you'll understand the challenge it means for a medically fragile child like Emmett.

Well, time to get off of my soap box. Emmett is fighting strongly. Can I say fighting strongly? Friday morning the medical team made the decision that the weekend would be one of ongoing calm and stability for Emmett. Thus we anticipate that he will continue throughout the weekend with the ventilator with extubation now likely happening on early next week. Frequent chest physio to ensure that his lungs clear up.

Unless the medical team surprises us. They have surprised us before and certainly will again. The ventilator settings are still encouraging Emmett to breathe on his own - he initiates and the machine then supports him. Sedation levels allow him to slip into a semi-conscious state from time to time.

While he is semi-alert in addition to chats, stories, and light rubs/tickles - Emmett gets a bit of Daniel Tiger's Neighbourhood or his long time favourite, Paw Patrol. Which makes me wonder, what kind of flashbacks is he going to get in the future about him memories in this semi-sedated state about puppies controlling the universe! Of course, this makes me laugh. Paw Patrol is already such a weird show - I've already discussed that so won't go into it here - but watching it through a two year olds eyes whose usually incredibly sharp mind has been altered by drugs ... it must be absolutely bizarre. Thank goodness for Daniel Tiger! Nothing like a dose of reality as a tiger humanely and compassionately leads you through life!

While on the topic of flashbacks, I have to confess to plagiarism. The other day I told you to read the Velveteen Rabbit. That was not new. Some time in the history of Emmett's Journey I directed you to do the same thing. How could I subject you to the same thought over again. Sorry about that. 

There probably won't be a blog post tomorrow. Probably.



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Guest Comment 5 years ago
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Sweet breaths -in and out. Sweet dreams too!