RSV Day 5

Kaitlyn had a worse night Saturday night. This is to be expected RSV usually gets worse before it gets better. Sats were in the low 90's high 80's most of the beginning part of the night. She did level out as the night went on and climbed up to the low 90's early Sunday morning. We pushed on with the Q3 treatments. We still weren't getting a whole lot out of her. I think she was starting to get not "dehydrated" but definitely on the dry side!! She got a new diaper at 4:00am and it was still bone dry at 9:00am!!!

Sunday morning during rounds I again brought up my concerns about Kaitlyn's nutrition/hydration!! She was still getting only half, if that, of her daily requirement for feeds. For an SMA child this is unacceptable!! The SMA 1 child has about 5-10% of the normal muscle mass! When we think about how critical muscle is for storing nutrients and acting as a buffer for when the body is in need, then it makes more sense why we as parents "freak-out" when our children are even slightly starved! We have spent a great deal of time and energy researching-networking trying to perfect her diet. If she doesn't get the nutrition she needs EVERY 24 hours then her body could potentially waste muscle (break down muscle for nutrients). This makes Kaitlyn weaker and the strength once lost does not usually return.

I was also concerned about Kaitlyn's ventilation. We usually check Kaitlyn's blood CO2 levels to see that she is getting enough air exchange.....breathing in enough O2 and expelling enough CO2. We also wanted to know what her electrolytes were as this can often give us an idea of hydration. None of the normal blood work had been done!

By mid-afternoon Kaitlyn had both her blood work done and a peripheral line placed. The blood work was all normal, and the IV allowed us to begin giving Kaitlyn PPN a dilute form of TPN (an intravenous form of nutrition)! Finally! So far so good. More wet diapers, and her secretions are thinner and we are getting stuff up now!